what is a casp tool for literature review

CASP checklists

CASP (Critical Appraisal Skills Programme) checklists are a series of checklists involving prompt questions to help you evaluate research studies. They are often used in Healthcare and cover the following types of research methods: Systematic Reviews, Randomised Controlled Trials, Cohort Studies, Case Control Studies, Economic Evaluations, Diagnostic Studies, Qualitative studies, and Clinical Prediction Rule.

The CASP checklists are usually structured around three main sections asking:

Are the results of the study valid?
What are the results?
Will the results help locally? (in my setting)

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Structure your evaluation

Use the appropriate checklist to help structure your evaluation of a research study to ensure you have considered all aspects of the study. The checklists can be found here:

CASP Checklists

Do the groundwork but be selective

Think of the questions on the relevant CASP checklist as a logical way to evaluate the quality of evidence in each text that you read. Following the checklist helps you to do the necessary groundwork, but not everything you write in response to the CASP checklist will be relevant for your assignment. Using the checklist as a way of structuring and stimulating your own thinking means you will have a better understanding of which evidence to select for inclusion in your work, and why it is suitable evidence.

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Implementing evidence into practice requires nurses to identify, critically appraise and synthesise research. This may require a comprehensive literature review: this article aims to outline the approaches and stages required and provides a working example of a published review.

Are there different approaches to undertaking a literature review?

What stages are required to undertake a literature review.

The rationale for the review should be established; consider why the review is important and relevant to patient care/safety or service delivery. For example, Noble et al 's 4 review sought to understand and make recommendations for practice and research in relation to dialysis refusal and withdrawal in patients with end-stage renal disease, an area of care previously poorly described. If appropriate, highlight relevant policies and theoretical perspectives that might guide the review. Once the key issues related to the topic, including the challenges encountered in clinical practice, have been identified formulate a clear question, and/or develop an aim and specific objectives. The type of review undertaken is influenced by the purpose of the review and resources available. However, the stages or methods used to undertake a review are similar across approaches and include:

Formulating clear inclusion and exclusion criteria, for example, patient groups, ages, conditions/treatments, sources of evidence/research designs;

Justifying data bases and years searched, and whether strategies including hand searching of journals, conference proceedings and research not indexed in data bases (grey literature) will be undertaken;

Developing search terms, the PICU (P: patient, problem or population; I: intervention; C: comparison; O: outcome) framework is a useful guide when developing search terms;

Developing search skills (eg, understanding Boolean Operators, in particular the use of AND/OR) and knowledge of how data bases index topics (eg, MeSH headings). Working with a librarian experienced in undertaking health searches is invaluable when developing a search.

Once studies are selected, the quality of the research/evidence requires evaluation. Using a quality appraisal tool, such as the Critical Appraisal Skills Programme (CASP) tools, 5 results in a structured approach to assessing the rigour of studies being reviewed. 3 Approaches to data synthesis for quantitative studies may include a meta-analysis (statistical analysis of data from multiple studies of similar designs that have addressed the same question), or findings can be reported descriptively. 6 Methods applicable for synthesising qualitative studies include meta-ethnography (themes and concepts from different studies are explored and brought together using approaches similar to qualitative data analysis methods), narrative summary, thematic analysis and content analysis. 7 Table 1 outlines the stages undertaken for a published review that summarised research about parents’ experiences of living with a child with a long-term condition. 8

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An example of rapid evidence assessment review

In summary, the type of literature review depends on the review purpose. For the novice reviewer undertaking a review can be a daunting and complex process; by following the stages outlined and being systematic a robust review is achievable. The importance of literature reviews should not be underestimated—they help summarise and make sense of an increasingly vast body of research promoting best evidence-based practice.

↵ Centre for Reviews and Dissemination . Guidance for undertaking reviews in health care . 3rd edn . York : CRD, York University , 2009 .
↵ Canadian Best Practices Portal. http://cbpp-pcpe.phac-aspc.gc.ca/interventions/selected-systematic-review-sites / ( accessed 7.8.2015 ).
Bridges J , et al
↵ Critical Appraisal Skills Programme (CASP). http://www.casp-uk.net / ( accessed 7.8.2015 ).
Dixon-Woods M ,
Shaw R , et al
Agarwal S ,
Jones D , et al
Cheater F ,

Twitter Follow Joanna Smith at @josmith175

Competing interests None declared.

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Critical Appraisal Skills Programme (CASP) Tools

Oxford Centre for Triple Value Healthcare Ltd (n.d.). The Critical Skills Appraisal Programme: Making sense of evidence . Retrieved from Organization website: http://www.casp-uk.net/

Description

These tools teach users to critically appraise different types of evidence. The program consists of seven critical appraisal tools to assess:

Systematic reviews
Randomized controlled trials (RCTs)
Qualitative research
Economic evaluation studies
Cohort studies
Case-control studies
Diagnostic test studies

Steps for Using Method/Tool

Each tool systematically guides users through questions in three main sections:

Is the study valid?
What are the results?
Will the results help locally?

Long, H. A., French, D. P., & Brooks, J. M. (2020). Optimising the value of the Critical Appraisal Skills Programme (CASP) tool for quality appraisal in qualitative evidence synthesis. Research Methods in Medicine & Health Sciences, 1 (1), 31–42. https://doi.org/10.1177/2632084320947559

Ma, L. L., Wang, Y. Y., Yang, Z. H., Huang, D., Weng, H., & Zeng, X. T. (2020). Methodological quality (risk of bias) assessment tools for primary and secondary medical studies: What are they and which is better?. Military Medical Research, 7 (1), 7. https://doi.org/10.1186/s40779-020-00238-8

These summaries are written by the NCCMT to condense and to provide an overview of the resources listed in the Registry of Methods and Tools and to give suggestions for their use in a public health context. For more information on individual methods and tools included in the review, please consult the authors/developers of the original resources.

We have provided the resources and links as a convenience and for informational purposes only; they do not constitute an endorsement or an approval by McMaster University of any of the products, services or opinions of the external organizations, nor have the external organizations endorsed their resources and links as provided by McMaster University. McMaster University bears no responsibility for the accuracy, legality or content of the external sites.

Critical Appraisal Skills Programme (CASP) Tools

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[webpage] Critically and efficiently appraise the evidence

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Evidence-based practice article reviews using CASP tools: a method for teaching EBP

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Literature reviews: Screening and appraising

Reviewing for research
Stand-alone review
Scoping and planning
Screening and appraising
The process of reviewing
Planning a search strategy

Top LitReview Systematic Screening

On this page:.

“ There is no 'perfect' number of papers to include in your systematic review. If your searching, screening and selection processes have been sufficiently rigorous, then you should feel confident that you have identified all relevant evidence ” Boland et al., Doing a systematic review: a student's guide

Once you've conducted your search you will be ready to screen your results against your inclusion and exclusion criteria in order to determine their eligibility for the review. You can then extract your data, summarise and discuss your findings and make your conclusions.

Screening and selection

Firstly you need to de-duplicate your total results set. Some databases such as EbscoHost will remove these automatically for you, but if you are using a variety of search platforms you will need to export to reference management software to remove the duplicates.

articles with titles and abstracts highlighted

The next stage is to screen the titles and abstracts of the papers for relevance , also using your inclusion and exclusion criteria . It is good practice to place these into a folder if the database has that option (such as EbscoHost), if not you can export to reference management software. RefWorks or EndNote allow you to export citation information from databases and organise the articles in folders around themes before exporting them to your documents saving you a lot of work typing, copying and pasting.

For anything other than an undergraduate review, there should ideally be at least two people screening the results to avoid bias. However, time and resource may necessitate that this is not possible.

abstract of article pointing to full text

Step three:

Next you should try and obtain the full text of the selected papers. If the University does not have a subscription then you may need to use the Interlibrary loan service . Contacting the authors or trying to locate a legal version via Google or networks such as Academia.edu or ResearchGate.net is another option.

some articles with ticks, some with crosses

Finally you need to decide whether these full text papers definitely meet your inclusion criteria . If you decide to exclude then make a note of the reasons why as you may need to document this further down the line.

The results of the screening and selection exercise should be reported in your methods section and the PRISMA flow diagram can be used to document these decisions.

Extracting relevant information

Once you have identified the papers to include, you need to recognise and then extract relevant data from each individual study. You can then create relevant extraction tables which might be in the form of a summary table or synthesis matrix - see our page on The process of reviewing for examples of these.

The data you might extract includes: authors & publication year ; study design ; number of participants ; interventions ; and study outcomes .

You may use data analysis tools such as NVivo and SPSS to extract and analyse data depending on the study type.

Deciding on quality

Once you've extracted the data it's important to examine the quality of the studies. You need to assess whether the studies have been designed, conducted and reported in a way that they can be considered as reliable ( rigour ) and whether they provide meaningful answers to your research questions ( relevance ).

CEBM also provides this further set of Critical Appraisal Guides .

Our page on The process of reviewing also has some advice on evaluating a source's worth and usefulness to your study.

Discussing and summarising findings

The discussion section of your review should provide a critical interpretation of the results in relation to the review question that you set out to answer. If these sections don't reflect the nature and limitations of the research process and the evidence you have presented, then you have not appropriately addressed the research question. The main components include:

What are the main findings ?

How do they fit with previously published research?

What are the strengths and limitations of the included studies ?

Can the findings be generalised ?

What are the implications of the review?

What conclusions can be drawn from the review?

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Galdas P, Darwin Z, Fell J, et al. A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN). Southampton (UK): NIHR Journals Library; 2015 Aug. (Health Services and Delivery Research, No. 3.34.)

Cover of A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN)

A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN).

Appendix 6 critical appraisal skills programme criteria.

Critical Appraisal Skills Programme criteria

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CASP item	Criteria used
1. Was there a clear statement of the aims of the research?	Aim can be determined from anywhere in the paper (e.g. title, abstract, introduction, methods)
2. Is a qualitative methodology appropriate?	Qualitative research is the appropriate way to address the aim or answer the research question (e.g. the research concerns experiences/views of participants, processes involved, or the nature of interactions)
3. Was the research design appropriate to address the aims of the research?	Data collection, data analysis and methodological approach are appropriate to address the aim or answer the research question; the review team classified methodological approach based on whether the approach had consistently been used throughout (e.g. grounded theory required analytical methods such as constant comparison as well as the development of a core category or theory)
4. Was the recruitment strategy appropriate to the aims of the research?	Authors clearly report selection of participants and this is appropriate to address the aim or answer the research question.
5. Was the data collected in a way that addressed the research issue?	Type of data collection method is clear (e.g. interview, focus group, participant observation, online postings) and has potential to address the aim or research question.
6. Has the relationship between researcher and participants been adequately considered?	Authors demonstrate self-reflexivity in data collection and data analysis processes
7. Have ethical issues been taken into consideration?	Approval from an ethics committee is reported
8. Was the data analysis sufficiently rigorous?	Authors clearly describe data analysis approach and employ strategies to ensure rigour (e.g. peer debriefing, member checking, negative cases).
9. Is there a clear statement of findings?	Findings are clearly stated (e.g. in the abstract or findings)
10. Is the research valuable?	Study appears valuable in own right (i.e. something has been ‘learnt’), rather than judged in relation to contribution made to the current review.

The main 10 items were scored ‘yes’, ‘no’ or ‘unclear’ whereas the additional prompts were used to facilitate summarising the main strengths, limitations and concerns of each study.

Source: CASP Qualitative Checklist . 281 URL: www.casp-uk.net/#!casp-tools-checklists/c18f8 (accessed 3 September 2013).

Included under terms of UK Non-commercial Government License .

Cite this Page Galdas P, Darwin Z, Fell J, et al. A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN). Southampton (UK): NIHR Journals Library; 2015 Aug. (Health Services and Delivery Research, No. 3.34.) Appendix 6, Critical Appraisal Skills Programme criteria.
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Critical Appraisal

Use this guide to find information resources about critical appraisal including checklists, books and journal articles.

Key Resources

This online resource explains the sections commonly used in research articles. Understanding how research articles are organised can make reading and evaluating them easier View page
Critical appraisal checklists
Worksheets for appraising systematic reviews, diagnostics, prognostics and RCTs. View page
A free online resource for both healthcare staff and patients; four modules of 30–45 minutes provide an introduction to evidence based medicine, clinical trials and Cochrane Evidence. View page
This tool will guide you through a series of questions to help you to review and interpret a published health research paper. View page
The PRISMA flow diagram depicts the flow of information through the different phases of a literature review. It maps out the number of records identified, included and excluded, and the reasons for exclusions. View page
A useful resource for methods and evidence in applied social science. View page
A comprehensive database of reporting guidelines. Covers all the main study types. View page
A tool to assess the methodological quality of systematic reviews. View page

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Chapter 5 covers critical appraisal of the literature. View this eBook

Chapter 6 covers assessing the evidence base. Borrow from RCN Library services

Section 1 covers an introduction to critical appraisal. Section 3 covers appraising difference types of papers including qualitative papers and observational studies. View this eBook

Chapter 6 covers critically appraising the literature. Borrow from RCN Library services

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Chapter 8 covers critical appraisal of the evidence. View this eBook

Chapter 18 covers critical appraisal of nursing studies. View this eBook

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Critical appraisal

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Shea BJ and others (2017) AMSTAR 2: a critical appraisal tool for systematic reviews that include randomised or non-randomised studies of healthcare interventions or both, British Medical Journal, 358.

An outline of AMSTAR 2 and its use for as a critical appraisal tool for systematic reviews. View article (open access)
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Optimising the value of the Critical Appraisal Skills Programme (CASP) tool for quality appraisal in qualitative evidence synthesis

Division of Psychology & Mental Health
Division of Psychology & Mental Health (L5)

Research output : Contribution to journal › Article › peer-review

Original language	English
Pages (from-to)	31-42
Journal
Volume	1
Issue number	1
DOIs
Publication status	Published - 6 Aug 2020

Access to Document

10.1177/2632084320947559

Fingerprint

Systematic Review Psychology 100%
Qualitative Study Psychology 100%
Critical Appraisal Nursing and Health Professions 100%
Health Care Policy Nursing and Health Professions 33%
Health Care Practice Nursing and Health Professions 33%

T1 - Optimising the value of the Critical Appraisal Skills Programme (CASP) tool for quality appraisal in qualitative evidence synthesis

AU - Long, Hannah

AU - French, David

AU - Brooks, Joanna

PY - 2020/8/6

Y1 - 2020/8/6

N2 - The value of qualitative evidence synthesis for informing healthcare policy and practice within evidence-based medicine is increasingly recognised. However, there is a lack of consensus regarding how to judge the methodological quality of qualitative studies being synthesised and debates around the extent to which such assessment is possible and appropriate. The Critical Appraisal Skills Programme (CASP) tool is the most commonly used tool for quality appraisal in health-related qualitative evidence syntheses, with endorsement from the Cochrane Qualitative and Implementation Methods Group. The tool is recommended for novice qualitative researchers, but there is little existing guidance on its application. This article considers issues related to the suitability and usability of the CASP tool for quality appraisal in qualitative evidence synthesis in order to support and improve future appraisal exercises framed by the tool. We reflect on our practical experience of using the tool in a systematic review and qualitative evidence synthesis. We discuss why it is worth considering a study’s underlying theoretical, ontological and epistemological framework and how this could be incorporated into the tool by way of a novel question. We consider how particular features of the tool may impact its interpretation, the appraisal results and the subsequent synthesis. We discuss how to use quality appraisal results to inform the next stages of evidence synthesis and present a novel approach to organise the synthesis, whereby studies deemed to be of higher quality contribute relatively more to the synthesis. We propose tool modifications, user guidance, and areas for future methodological research.

AB - The value of qualitative evidence synthesis for informing healthcare policy and practice within evidence-based medicine is increasingly recognised. However, there is a lack of consensus regarding how to judge the methodological quality of qualitative studies being synthesised and debates around the extent to which such assessment is possible and appropriate. The Critical Appraisal Skills Programme (CASP) tool is the most commonly used tool for quality appraisal in health-related qualitative evidence syntheses, with endorsement from the Cochrane Qualitative and Implementation Methods Group. The tool is recommended for novice qualitative researchers, but there is little existing guidance on its application. This article considers issues related to the suitability and usability of the CASP tool for quality appraisal in qualitative evidence synthesis in order to support and improve future appraisal exercises framed by the tool. We reflect on our practical experience of using the tool in a systematic review and qualitative evidence synthesis. We discuss why it is worth considering a study’s underlying theoretical, ontological and epistemological framework and how this could be incorporated into the tool by way of a novel question. We consider how particular features of the tool may impact its interpretation, the appraisal results and the subsequent synthesis. We discuss how to use quality appraisal results to inform the next stages of evidence synthesis and present a novel approach to organise the synthesis, whereby studies deemed to be of higher quality contribute relatively more to the synthesis. We propose tool modifications, user guidance, and areas for future methodological research.

U2 - 10.1177/2632084320947559

DO - 10.1177/2632084320947559

M3 - Article

SN - 2632-0843

JO - Research Methods in Medicine and Health Sciences

JF - Research Methods in Medicine and Health Sciences

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Comparing Critical Appraisal Tools: Which One Is Right for Your Literature Review?

Are you embarking on a literature review and finding yourself lost in a sea of research papers, not sure how to evaluate their quality and relevance? Fear not! In this comprehensive guide, we will dive deep into the world of critical appraisal tools for literature reviews and systematic reviews. By the end of this article, you’ll have the knowledge and confidence to choose the right tool for your specific needs.

Table of Contents

Understanding the Significance of Critical Appraisal

Critical appraisal is the process of systematically examining research articles, identifying their strengths and weaknesses, and assessing their quality and relevance. It’s an essential step in any literature review , helping you distinguish robust, reliable studies from those with flaws.

By critically appraising your sources, you can:

Ensure the credibility of your literature review .
Identify gaps and limitations in existing research.
Make informed decisions on which studies to include in your review.
Enhance the overall quality of your literature review .

Exploring Critical Appraisal Tools

There are several critical appraisal tools available, each designed for a specific purpose and research type. Let’s delve into some of the most widely used ones:

1. Critical Appraisal Tools for Literature Reviews

When conducting a literature review , you may come across a variety of critical appraisal tools designed to assess the quality and relevance of your sources. Some popular options include:

a. CASP (Critical Appraisal Skills Programme)

CASP is a widely recognized critical appraisal tool that provides a structured framework for assessing the quality and validity of research studies. It offers a set of checklists tailored to different study types, making it suitable for various research designs.

b. JBI (Joanna Briggs Institute) Critical Appraisal Checklist for Text and Opinion Papers

JBI offers a checklist designed specifically for appraising text and opinion papers. It’s a valuable resource when your literature review includes studies of this nature.

c. AMSTAR 2 (A Measurement Tool to Assess Systematic Reviews)

AMSTAR 2 is a critical appraisal tool that focuses on the assessment of systematic reviews. If your literature review includes systematic reviews and meta-analyses, this tool is highly relevant.

2. Critical Appraisal Tools for Systematic Reviews

When conducting systematic reviews, which aim to synthesize evidence from multiple studies, a distinct set of critical appraisal tools is available. Here are two notable options:

a. ROBIS (Risk Of Bias In Systematic reviews)

ROBIS is designed to assess the risk of bias in systematic reviews. It provides a structured process for evaluating potential sources of bias within the review process.

b. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses)

PRISMA is a guideline that helps ensure the transparent and complete reporting of systematic reviews and meta-analyses. While not a traditional critical appraisal tool, it plays a crucial role in assessing the quality of systematic reviews.

Choosing the Right Critical Appraisal Tool

The choice of a critical appraisal tool largely depends on the nature of your review and the types of studies you are analyzing. Let’s break down the decision-making process:

1. Consider Your Research Type

If you are conducting a traditional literature review that includes a wide range of study types, a versatile tool like CASP might be your best choice.
For text and opinion papers, the JBI checklist is tailored for this specific purpose.
If your focus is on systematic reviews and meta-analyses, tools like ROBIS and PRISMA are indispensable.

2. Evaluate the Study Designs

Assess the study designs included in your review. Ensure that your chosen tool aligns with the types of studies you are appraising.
Consider the comprehensiveness and specificity of the tool in assessing various aspects of the research, such as methodology, reporting, and bias.

3. Your Familiarity and Expertise

Choose a tool that you are comfortable using or willing to invest the time to learn. Familiarity with the tool will facilitate a smoother appraisal process.
Consider the availability of training resources or support related to your chosen tool.

4. Research Community Preferences

Take into account the conventions and preferences of your research community. Some tools may be more widely accepted or recommended in certain fields.

Example of CASP Tool for Literature Review

Let’s take a closer look at a hypothetical scenario where you might choose the CASP tool for your literature review .

Excerpt from the Literature Review :

“In this literature review , we utilized the CASP (Critical Appraisal Skills Programme) tool to assess the quality and relevance of the selected research studies. CASP offers a flexible framework that suits a diverse range of study types, allowing us to critically appraise randomized controlled trials, qualitative research, and cohort studies, among others. The CASP checklist guided our assessment of methodological rigor, sample representativeness, data collection, and reporting, ensuring a comprehensive evaluation of the studies included in this review.”

This example demonstrates how the CASP tool can be applied effectively to assess a variety of study types in a literature review .

In Conclusion

Choosing the right critical appraisal tool is a critical step in the literature review or systematic review process. Whether you opt for CASP, JBI, ROBIS, PRISMA, or any other tool, your selection should align with the goals and focus of your research.

The art of conducting a literature review involves not just the mastery of content, but also the mastery of the tools that help you evaluate and synthesize that content. So, choose wisely, wield your critical appraisal tool with expertise, and embark on your journey to produce high-quality, impactful literature reviews and systematic reviews that contribute to the body of knowledge in your field.

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Open access
Published: 15 August 2024

A framework for health information governance: a scoping review

Somayeh Ghaffari Heshajin 1 ,
Shahram Sedghi ORCID: orcid.org/0000-0001-6457-7464 1 ,
Sirous Panahi 1 &
Amirhossein Takian 2

Health Research Policy and Systems volume 22 , Article number: 109 ( 2024 ) Cite this article

90 Accesses

Metrics details

As a newly emerged concept and a product of the twenty-first century, health information governance is expanding at a rapid rate. The necessity of information governance in the healthcare industry is evident, given the significance of health information and the current need to manage it. The objective of the present scoping review is to identify the dimensions and components of health information governance to discover how these factors impact the enhancement of healthcare systems and services.

PubMed, Scopus, Web of Science, ProQuest and the Google Scholar search engine were searched from inception to June 2024. Methodological study quality was assessed using CASP checklists for selected documents. Endnote 20 was utilized to select and review articles and manage references, and MAXQDA 2020 was used for content analysis.

A total of 37 documents, including 18 review, 9 qualitative and 10 mixed-method studies, were identified by literature search. Based on the findings, six core categories (including health information governance goals, advantages and applications, principles, components or elements, roles and responsibilities and processes) and 48 subcategories were identified to form a unified general framework comprising all extracted dimensions and components.

Conclusions

Based on the findings of this scoping review, health information governance should be regarded as a necessity in the health systems of various countries to improve and achieve their goals, particularly in developing and underdeveloped countries. Moreover, in light of the undesirable effects of the coronavirus disease 2019 (COVID-19) pandemic in various countries, the development and implementation of health information governance models at organizational, national and international levels are among the pressing concerns. Researchers can use the present findings as a comprehensive model for developing health information governance models. A possible limitation of this study is our limited access to some databases.

Peer Review reports

Introduction

The value of information in the healthcare industry.

The healthcare industry is rapidly evolving while many new demands are emerging, among which there is a fundamental need for accurate and applicable information [ 1 ]. The value and importance of information in health organizations stem from their dual missions and goals. Health data and patient information are regarded as valuable sources for researchers to enhance healthcare provision in terms of efficiency, safety and quality [ 2 , 3 , 4 , 5 ]. It is acknowledged that high-quality data and information facilitate high-quality care, accurate research, favorable patient outcomes, cost-effective risk assessment and strategic decision-making [ 6 ]. Consequently, managing and controlling data and information in health organizations are regarded as the core fundamental requirement in these organizations.

What is information governance?

Timely and effective management of crucial information constitutes a pillar of support for any organization [ 7 ]. In this regard, most organizations have devoted time and resources to the development of information governance systems to provide specific solutions at any time or location [ 7 , 8 ]. The concept of information governance has been around since the early twentieth century when organizations began to develop effective and comprehensive management of data and information. Many consider it to be the effective management of knowledge assets [ 9 , 10 ]. Information governance is an enterprise-wide accountability framework that promotes appropriate behavior when handling information-related matters [ 8 , 10 , 11 ]. This concept encompasses the processes, rules, standards and criteria that guarantee an organization’s effective and efficient use of information to achieve its goals. Information governance also encompasses the entire information life cycle, including how information is created, stored, used, archived and discarded. In addition, this concept determines who should have access to specific information when and how [ 1 , 4 , 6 , 12 , 13 , 14 , 15 ].

Health information governance (HIG)

Information governance in the healthcare industry is a relatively new concept. Primary efforts in this field date back to 1997, when the National Health Service of England (NHS) developed the Caldicott Principles [ 3 ]. They initiated the practice of information governance in the health sector in 2002 [ 16 ]. Legal, regulatory and information security requirements shape the primary drivers for developing information governance programs in various organizations [ 16 , 17 ]. In healthcare organizations, however, quality control and confidentiality of the ever-increasing volumes of information are crucial. Therefore, creating information governance programs is essential to improve care quality and achieve satisfactory results for patients and other stakeholders [ 1 , 16 ].

The necessity of HIG

According to Smallwood: “Bad information [in health] means people could die.” [ 16 ]. The United States has the most expensive healthcare in the world; however, medical mistakes are the third reason for death in this country [ 18 ]. To explain the necessity of HIG, it is important to consider some experts’ opinions; Smallwood explained in 2019 that one possible reason for the over 250,000 people dying from medical mistakes each year in the U.S. [ 18 ] is poor information governance [ 16 ]. Moreover, Riegner believes that the cause of major failures and problems during the coronavirus disease 2019 (COVID-19) pandemic is the lack of global information governance [ 19 ]. Conversely, a recent book published by OCED Library highlights South Korea, one of the countries with the best results against COVID-19, has one of the strongest health data and information governance [ 20 ].

Information governance is essential for enhancing healthcare outcomes in several ways; accurate, reliable and current information greatly benefits population health and care provision by enabling better clinical decision-making and reducing medical mistakes [ 8 , 16 , 21 ]. An example is the electronic health record system that assists medical specialists in accessing information about a patient’s medications, allergies and more [ 22 ]. In addition, HIG enables seamless sharing of patient data among different healthcare providers, facilitating better care coordination, especially for patients with complex or chronic conditions who may see multiple specialists [ 23 ]. Furthermore, HIG can lead to (1) more efficient healthcare delivery through effective data management [ 24 ], (2) enhanced population health management by analyzing big data to identify trends, risk factors and opportunities for preventive care [ 25 ], (3) advancements in medical research and treatment protocols [ 26 ] and (4) empowerment of patients to play a more active role in their healthcare decisions [ 21 , 24 ].

HIG best practices

Despite the brief history of HIG, numerous studies have emphasized its significance [ 16 , 27 ]. In addition to England, some other countries, such as Canada, Australia and the United States, have developed and implemented HIG models [ 2 ]. Information Governance Principles for Healthcare (IGPHC) and the associated maturity model, developed in 2014 by the American Health Information Management Association (AHIMA), are among the most recent and comprehensive efforts in this field. IGPHC is a framework that includes eight fundamental principles for HIG [ 8 , 28 ]. In addition, various models of HIG have been developed based on research reports. Each model introduces specific dimensions and components, mostly built upon the fundamental principles proposed by AHIMA. Slight nuances depend on the study background, aim and geographical location.

Apart from the models presented and used by the pioneering countries, no other comprehensive resources were found for studying and obtaining ideas for using or developing novel models of HIG; indeed, despite the booming growth of the healthcare industry, concerns have been raised about the lack of information governance programs [ 2 , 10 , 16 ]. Therefore, the present study aims to:

Map the existing literature on HIG models to identify the types of models used by pioneering counties and explore the available resources for developing novel models.

Identify the dimensions and components of existing HIG models and identify any potential knowledge gaps.

Explore the relationship between HIG factors and the enhancement of healthcare systems and services.

By achieving these objectives, this scoping review will provide a clear understanding of the current landscape of HIG models and their impact on healthcare. It will also identify areas for further research and development of more comprehensive and effective HIG programs.

Methodology

This scoping review was conducted based on the five steps outlined by Arksey and O’Malley [ 29 ]: (1) formulating the research question, (2) searching for relevant literature, (3) selection of eligible studies, (4) data extraction and (5) analysing and describing the results. In addition, we followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) reporting guidelines [ 30 ]. No protocol was registered for this review. The scoping review methodology was selected due to its relevance to the clarification of key concepts in literature and identifying key characteristics or factors related to the concept of HIG [ 31 ].

Search strategy and information sources

The search strategy for electronic databases was developed, piloted and refined by the team’s librarians. After finalizing our search in PubMed through an iterative process involving pilot tests, we completed a systematic search of PubMed, Scopus, Web of Science, ProQuest and Google Scholar for relevant published articles up to July 2022 and updated until June 2024; there was no time constraints for publications and records. Furthermore, the reference lists of all included studies were manually scanned to identify any relevant investigations suitable for inclusion. Search strategies by the following two categories of keywords using Boolean operators are presented in ‘Supplementary Table 1, Additional file 1 ’:

(1) (‘information governance’ OR ‘data governance’ OR ‘knowledge governance’ OR ‘information policy’).

AND (2) (health* OR medical OR clinical OR hospital*).

Eligibility criteria

The criteria for the inclusion and exclusion of articles are listed below (Table 1 ).

Study selection

After conducting a literature search, we imported the results into Endnote 20 (Thomson Reuters, New York, NY). Two reviewers used Endnote 20 to screen the articles. After removing duplicates, two reviewers independently read and reviewed the title and abstract of each document to determine if it met the inclusion criteria. Publications that were deemed potentially relevant were retrieved in full text and screened by two independent reviewers. Any disagreements between the reviewers were resolved through discussion. If consensus could not be reached, a third reviewer made the final decision.

Data quality assessment

After the selected articles were rechecked, two independent authors assessed each document using the CASP quality assessment checklists. We have used CASP checklists for review articles, case–control articles and qualitative research, which have 10, 12 and 10 questions, respectively. The validity, results and clinical relevance are the three main areas covered by CASP checklists [ 32 ]. We changed the possible answers for each item from yes or no to yes and no or unclear to reflect methodological quality (Supplementary Fig. 1, Additional file 1 ). All documents with a total score of six or more were considered as the research population. Two of the articles, which scored five, did not meet the required score. However, to prevent potential bias and to include a diverse range of related literature, the reviewers decided to include these articles in the final collection of selected articles.

Data extraction

Eventually, 37 articles underwent in-depth analysis and information extraction after their quality was confirmed. A data charting form was developed and the first 10 articles were piloted by the reviewers. Data extracted included study characteristics (first author, year, country of affiliation, article type, study setting), type of health governance investigated and the summary of the findings. Excel-formatted integrated data charting form was used to compare, combine and classify the results and findings. Data were extracted by a single reviewer and validated by the second reviewer. If any disagreement happened, it was resolved by discussion.

Statistical analysis

The content analysis results of the reviewed articles were arranged in chronological order, and the qualitative data analysis software MAXQDA 2020 was used for the thematic analysis of the findings to achieve more accurate results and to extract valid and documented themes. MAXQDA is suitable for content analysis due to its strong coding capabilities, powerful visual tools, advanced search features and sharing and collaboration features [ 33 ]. We primarily have used this software for its ability to share data among reviewers, visually organize codes (especially important due to the wide range and complexity of our study’s data) and help to identify key themes. To prevent any bias, we manually coded the literature and did not use electronic coding tools in MAXQDA to generate the codes. The codes were generated based on the concepts in the text. Then, related codes were grouped together based on their similarities and differences and labelled to form descriptive themes. The main themes were then identified. Data analysis and grouping were independently carried out by two reviewers. Any discrepancies were resolved through discussion with a third reviewer.

Search results

The initial database search resulted in the retrieval of 3955 records. After eliminating inappropriate documents, remaining 37 titles aligned with the objectives were chosen for in-depth inspection, extraction of the dimensions and components and content analysis (see Fig. 1 ).

PRISMA flow diagram of included studies

Publication characteristics

The characteristics of the articles reviewed are summarized in ‘Supplementary Table 2, Additional file 1 .’ The publication date of the chosen articles fell between 2003 and 2024 despite the absence of a certain time limit during the document search phase. The majority of the articles (over 70%) were published between 2011 and 2020. Additionally, the fewest articles were published between 2003 and 2010. The document types were review, mixed-methods and qualitative, respectively. In a scoping review, a wide range of articles can be included, such as review articles, as selected sources. Using a variety of sources can help provide a more comprehensive and in-depth view of the topic under discussion [ 34 , 35 , 36 , 37 ]. In most articles, the data collection tool was a literature review, an interview guide, a questionnaire, a data collection (charting) form, or a combination of these. Furthermore, there were eight articles where no information was available about the data collection tool, and these were labelled as ‘not specified’. More than 60% of the articles analysed their data using the content analysis method. Descriptive statistics, inferential statistics, framework analysis and thematic analysis were the other used data analysis methods. Additionally, seven articles did not demonstrate their analysing method, labelled as ‘not specified’ in the table. Sixteen of the Included studies dealt with information governance, 12 with data governance, and the remaining nine examined various aspects of health-related IT governance, digital data governance, indigenous data governance, clinical governance and information security governance.

The process of classifying and codifying the results yielded six themes or main components (including information governance goals, applications of information governance, principles, components or elements, roles and responsibilities and information governance processes) (Fig. 2 ).

HIG main components

The goals of information governance in the health system

The first theme extracted from the literature review introduced ‘the goals of HIG’ based on the needs of the health system and information governance stakeholders (see Table 2 ).

According to the results, ‘providing high-quality health care’ is the primary goal of health information governance. This goal can subsume and serve as a precondition for the other goals. Effective and efficient management leads to high-quality care, which in turn generates high-quality data, boosts productivity and lowers healthcare costs [ 6 , 38 , 39 , 40 ]. Numerous studies have emphasized that access, security and privacy of highly sensitive health data and information are among the most important goals of HIG [ 6 , 22 , 40 , 41 , 44 , 47 ]. According to our findings, the common objectives of HIG programs in various contexts are aligned with the organizational objectives of healthcare systems, which ultimately lead to client satisfaction and trust. Several studies have stated that gaining and maintaining the clients’ trust is the ultimate goal of HIG and its effectiveness [ 22 , 41 , 42 , 44 , 45 , 48 ].

Advantages and applications of HIG

The second theme derived from the review includes their ‘advantages and applications’, which are related to the system goals and contribute to the realization of those goals. Table 3 presents five primary applications of the HIG systems and their respective constituents.

Cost reduction and economic improvement

The first identified category in the theme of advantages and applications of HIG, can be viewed as an application and primary goal not only in health organizations but in all organizations that use information governance programs. This theme is divided into eight subcategories, such as ‘savings in service provision, resource allocation and procurement, time and information costs’ [ 8 , 22 , 38 , 39 , 49 , 51 , 52 ]. These categories ultimately emerge within the eighth subcategory labelled ‘business intelligence’ [ 38 ]. In fact, business intelligence can be viewed as a concept encompassing the seven preceding subcategories.

Improved quality of and access to healthcare services

According to the second category identified under the advantages and applications, HIG can improve the quality of service delivery in diverse ways within health organizations: planning for the management and optimization of community health by increasing the potential for high-quality health service delivery and fair access to services for different segments of society, improving the ability to follow up on high-quality results, increasing cooperation and interaction with doctors and, thus, reducing medical errors, improving and optimizing the health services received by patients, enhancing the efficiency and effectiveness from various perspectives as regards the health organizations services and interaction with all potential stakeholders, as well as identifying defects and risk management [ 8 , 22 , 38 , 39 , 49 ].

Management and policymaking at different levels of healthcare organizations

The present study divided the levels of health care organizations for managing and policymaking into macro levels, inter-organizational and organizational levels. At the macro-organizational level, HIG leads to the planning, determination and implementation of rules, policies and standards. Moreover, the specification of roles and responsibilities, approaches related to medical equipment management, restrictions on information access and decision-making processes are among the additional advantages of information governance at the macro level of healthcare organizations [ 8 , 22 , 38 , 39 ]. One of the benefits of HIG in inter-organizational management is the monitoring and assessing compliance with rules, as well as the cooperation and competition between organizations [ 22 , 40 , 49 ]. Finally, issues such as improving organizational performance, supporting strategic decisions, resource management, reducing repetitive actions and enhancing patient interaction have been cited as benefits of HIG at the basic organizational level [ 8 , 22 , 45 , 51 ].

‘Creation of a culture of trust’ and ‘Information and knowledge management’

These are the last two categories identified in relation to the advantages and applications in the present study. Among the subcategories associated with the theme of establishing a ‘culture of trust’ are the ‘sharing of data and information’ and the ‘consideration of privacy, security and reliability’ [ 8 , 40 , 45 , 51 ]. In the realm of ‘information and knowledge management’, data and knowledge are treated as assets, and their potential benefits to an organization are discussed at length. These benefits include, but are not limited to, increased productivity, better decision-making and new avenues for health research [ 8 , 22 , 51 , 52 ].

In reviewing the selected studies, we found a consensus regarding the applications of HIG programs; in fact, most studies have mentioned all five applications listed in the table, along with the corresponding components, the only differences being in their scope and depth. The compatibility of applications with the stated HIG goals and definitions is one of the most important aspects of this section’s findings. Gartner’s definition pertains to the applications of information management and the establishment of a culture of trust, which includes roles, policies, standards and criteria that considers effective use of information as a prerequisite for ensuring the achievement of organizational goals [ 22 , 55 ]. Smallwood also included the accuracy and security of the data in his definition [ 6 , 16 ]. Donaldson and Walker introduced information governance in 2004 as an organization-wide movement towards confidentiality, integrity and secure access to information [ 55 ]. In addition, Panian’s (2010) definition emphasizes adopting management and policy applications, fostering a culture of trust and enhancing the quality and accessibility of healthcare services [ 43 ]. The Association of Records Managers and Administrators (ARMA) highlights the policy and management aspects of information governance [ 39 ]. Additionally, the AHIMA has pinpointed the importance of information management in the health sector, as reflected in Briggs’ (2013) definition [ 39 ].

HIG principles

The principles of HIG, comprising 13 components, emerged as the third theme in this analysis. In this regard, the majority of reviewed studies reflected a consensus. These principles are presented in Table 4 .

The eight IGPHC principles developed by AHIMA are accountability, transparency, integrity, protection, compliance, availability, retention and disposal [ 6 , 8 , 49 , 56 , 57 , 59 , 65 ]. In addition to these eight principles, the developed HIG programs have also developed concepts such as consent, participation, continuous quality improvement, independence and justice and effectiveness and efficiency. In practice, however, there are minor differences in the principles based on the goals and approaches of the programs.

Transparency

The first category under the principles theme is transparency, which presents all decisions, policies and measures related to the use of data in a way that is accessible to stakeholders and the public in an effort to gain and maintain trust [ 6 , 8 , 40 , 44 , 56 ]. However, it is emphasized that maintaining the confidentiality and controlling access to confidential information does not conflict with transparency, and healthcare organizations should consider their obligations in this regard [ 56 ].

Accountability

‘Accountability’ is predicated on the presence of a senior leader who should assist various groups in developing, implementing and updating a comprehensive HIG program [ 56 ]. Two applicable digital health governance principles, noted by Marcelo et al. [ 38 ], are ‘responsibility and accountability’, where an accountable person is defined as someone who is responsible for making decisions and taking actions related to digital health. The principle of accountability also involves digital health responsiveness to the health system priorities and its ability to balance the competing needs of various stakeholders [ 38 ]. Laurie and Sethi have defined responsibility and accountability as fundamental principles in the framework of good health governance. According to their view, this principle refers to the responsible use of health data in scientific studies directed by the goals of the relevant organizations and includes 15 key subareas [ 46 ].

The third principle of HIG identified in this study is ‘integrity’, ensuring a reasonable and adequate level of information authenticity and reliability for the organization. This principle seeks to ensure the accuracy of information through the design and implementation of governance processes and procedures that govern the production, use and maintenance of information [ 40 , 57 , 58 ].

‘Protection’ is the fourth category under the theme of HIG principles. It involves ensuring the confidentiality and security of sensitive information, which is essential for strong information governance programs. In various studies, it is emphasized as protection [ 6 , 40 , 57 , 61 , 62 , 65 ], confidentiality [ 38 ] or security and confidentiality [ 58 ]. According to the principle of protection, information has varying degrees of sensitivity that must be classified and safeguarded throughout its lifetime. Additionally, this information must be protected at the source and throughout the ecosystem of the healthcare organization [ 57 ]. The six principles developed by the Caldicott Committee address the use of patients’ personal data and compliance with their security and confidentiality, demonstrating the significance of health data protection [ 60 , 66 ]. Also, protection is regarded as an essential component of the digital health governance [ 38 , 64 ].

The next principle is ‘compliance’, which requires the information governance system to operate legally and ethically. Neglecting compliance can result in the organization’s inability to deliver quality services [ 59 ]. In line with the compliance principle, Willison et al. developed the principle of obedience to the rule of law to gain and maintain public trust [ 44 ]. The same definition further highlights the importance of compliance with the rule of law in digital health governance [ 38 ].

Availability

In theory, the most important goal of availability is to gain the organization’s trust, as a lack of access to the right information at the right time can put patient care at risk [ 59 ]. Marcelo et al. believe that timely access to reliable and high-quality health data improves the surveillance of infectious diseases, enables more targeted allocation of health resources, expedites the response to the community’s healthcare needs and facilitates the monitoring of care quality [ 38 ].

Retention and disposal

The ‘retention’ principle can contribute significantly to the success of HIG programs. An organization’s ability to maintain all the necessary information is of utmost importance in light of the fact that organizations produce and store vast amounts of data (mostly electronically) [ 65 ]. Retention is one of the accentuated principles in NHS’s HOURS model [ 58 ]. Part of the principles of digital data governance refers to the establishment of an independent, long-term data storage and management program [ 64 ], which contrasts with HIG’s principle of retention in certain ways. To reduce potential losses and expenses, IGPHC states that certain types of data must be deleted after their retention periods have expired [ 65 ]. This highlights the importance of ‘disposal’ as the next HIG principle. Based on this principle, information has a shelf life, and when the organization no longer requires it, it becomes a burden and must be disposed of in accordance with the rules of the retention plan [ 65 ].

‘Consent’ is a route for voicing preferences and the need for being treated with dignity [ 40 ]. If consent cannot be obtained for the use of personal data, according to Laurie and Sethi, two specific actions can be taken: anonymizing the data as much reasonably as possible and obtaining permission from an appropriate regulatory body [ 46 ]. Anonymization involves removing clients’ identity information from data sets to protect privacy so that they can be used legally for other legitimate purposes [ 47 ].

Participation

‘Participation’ is a further category identified in this review under the principles theme, by which anyone affected by the health sector decisions can make their own contributions to this process [ 38 ]. When individuals are unable to make decisions about their personal information, it is crucial for them, including patients and other stakeholders, to have the opportunity to have input throughout the governance process [ 44 ]. The primary objective is to gain and maintain the stakeholders’ trust.

Continuous quality improvement, independence and effectiveness

According to the ‘continuous quality improvement’ principle, the process of information governance deals with the provision of accurate and up-to-date data and services to establish and uphold trust [ 44 , 51 , 64 ]. Impartiality, fairness, independence and inclusiveness, with the same objective as the quality improvement principle, are intertwined with the fair presentation of the information governance program’s benefits [ 38 , 44 ]. Finally, ‘effectiveness and efficiency’ were the last category identified in the theme of principles in HIG, which deals with ensuring the fulfilment of the organization’s comprehensive goals and its efficiency in obtaining the highest efficiency as a result of its activities. The ultimate goal of this principle is to gain and maintain the stakeholders’ trust and achieve the organization’s business goals [ 38 , 44 ].

HIG components or elements

The fourth theme resulting from the study review (i.e. HIG components or elements) consists of 11 components that characterize the fundamental components of information governance models according to the established principles (Table 5 ).

Rules, standards and policies

The focus of HIG programs is on the categories of laws, standards and policies, which have been occasionally discussed either as distinct categories or complementary components in some studies. Due to their fundamental proximity and alignment, ‘laws and standards’ were determined to be the first category in this study, followed by ‘policies and guidelines’. Legal requirements and standards are also introduced as the fundamental components of information governance in the ARMA and AHIMA definitions [ 39 , 49 ]. The Data Governance Institute (DGI) has introduced the laws and rules of interaction, which include policies and standards, as one of its three core categories of governance components in data governance [ 6 ]. In addition, other studies have identified legal requirements, policies, standards and implementation of standards as the principal components of HIG programs [ 48 , 54 , 61 , 62 ].

Compliance with information governance policies and procedures enables healthcare organizations to meet legal and regulatory requirements and ensures the safety and quality of patient care [ 57 ]. Consequently, policies and strategies may be conceived as including rules and standards, the prominent aspects of which may include data protection, freedom of information, confidentiality and information security. Other categories of interest are document and records management, policy for determining the responsibilities of key stakeholders, operational and training directives, the framework for organizational costs, policies related to setting objectives and developing strategic plans [ 6 , 40 , 49 , 53 , 62 , 63 , 67 ].

Information management

‘Information management’ addresses the management of the life cycle of information, from production to disposal, which is a crucial issue for health organizations and all organizations. Information management can handle the entire life cycle of information, including how to create, store, use and archive information. In addition, information management determines who should have access to particular information, when and how [ 6 ]. Notably, ‘document management’ and ‘quality assurance’ are listed as one of the subcategories of information management in the current study, because information management can also encompass documents. In addition, information life cycle management comprises the following steps: generation and collection, analysis, access and use, storage and organization, dissemination, disposal, exchange, quality management and integrity of information [ 22 , 39 , 50 ].

The remaining three categories in the current study introduced as essential categories for HIG elements are the governance program types. Due to the expansive nature of the concept of information governance, data governance, IT governance and information security governance are introduced as the subsets of information governance in several studies. Moreover, it has been acknowledged that the umbrella term ‘information governance’ subsumes these three governance concepts [ 22 , 40 , 49 , 58 , 62 ].

Data governance

Data governance is the processes, policies, standards and technologies necessary for an organization to manage and ensure data availability, quality, consistency, auditability and security [ 43 ]. Data managers establish policies and procedures governing the definition, accessibility, protection, archiving, ownership and integrity of data to ensure the precision and security of them [ 6 , 16 , 52 ]. Furthermore, since health data is the foundation of any governance process, it is logical to prioritize data governance as one of the primary categories within the HIG elements theme.

Information technology governance

Dong et al. have emphasized that information governance and information technology governance are inseparable in nature. Effective information governance programs require IT assistance to manage information governance policies and processes, engage stakeholders and guarantee data quality. Additionally, information in the IT sector is crucial for identifying the appropriate technology that can support information governance, and technology investments should support the mission and vision of information governance [ 6 ]. According to Datskovsky et al., information cannot be trusted unless the technology infrastructure on which it is created, used, maintained and stored is reliable by itself [ 57 ]. The category of information technology governance in this study differs from other studies [ 40 , 57 ] in treating information technology management as a subcategory of information technology governance. This is because the information technology governance category encompasses all other aspects of the concept of information technology management.

Information security governance and risk management

‘Information security governance’ is the third aspect of governance patterns identified in the current study as one of the categories related to the theme of HIG elements. The objective of information security governance in healthcare is to safeguard all health-related data to ensure their confidentiality, availability and integrity. This is crucial to maintain business continuity, reduce risks and demonstrate best practices and compliance [ 62 ]. Furthermore, information security governance tended to fully incorporate information security management in an attempt to comply with legal and professional requirements [ 62 ]. The first part of the Information Security Management Standard in the NHS HOURS series highlights the information security best practices such as security policy, security organization, asset classification, control, communication, operations, management, access control, systems development and maintenance, business management and compliance. Numerous studies have repeatedly referred to information security aspects, either as a separate category or in conjunction with such categories as laws, policies and standards [ 39 , 51 , 58 , 60 , 62 , 66 ]. Some studies have also recommended information security as a subcategory of risk management [ 22 , 39 , 40 , 49 , 53 , 57 , 60 , 62 , 66 ]. Information security is ascertained as a distinct category from risk management in the present investigation due to its high rate of sensitivity and salience as well as the increasing emphasis on these two facets of information governance. Risk assessment is a security process that entails considering potential threats and risks to data, creating policies and procedures for security officials and other staff to follow and designing appropriate protective measures in the healthcare sector [ 62 ]. Recommended methods for risk management involve clear reporting culture, regular risk recording, risk reduction in patient-related processes, quality impact assessments, continuous risk reduction, service speed and scale development and innovation and transformation [ 53 ].

Human resource

‘Human resource management’ is another category identified as an element of HIG models that encompasses all processes related to employees and human resources; it is also regarded as an essential and valuable aspect for both the health sector and other organizations. Among the significant issues that must be addressed in this category are employee knowledge and skills, knowledge expansion and training and strategic orientation [ 50 , 53 , 54 , 62 ]. In addition, time management and the optimal utilization of employees’ knowledge, skills and competencies are considered as important factors in this field [ 53 ]. This category has a direct relationship with the principle of compliance, as workforce training enables individuals to align their activities with policies and help appreciate their significance [ 57 ]. Alternatives for participation and consensus may include open meetings, public workshops, national associations, advisory committees, satisfaction surveys, conferences and national health associations [ 53 ].

Quality management

In light of the significance of assuring the quality and integrity of healthcare information [ 22 ], the next theme of the elements of HIG patterns is ‘the quality management’, which can be characterized by factors such as reducing and adjusting mortality data, improving clinical results, improving research results, positive patient feedback, providing fruitful services and enhancing the treatment goals for appropriate and timely care [ 53 ]. Notably, adhering to information governance policies and procedures can assist the organizations in meeting legal requirements and ensuring the safety and quality of patient care [ 57 ].

Project and change management

Since the modern era necessitates routine monitoring of the organizational structures and infrastructures [ 57 ] to identify and modify possible shortcomings and lower the rate of related risks, ‘the project management and change’ category emerged in the present study as a defining category within the elements of HIG. This category is a combination of ‘the monitoring category’ and ‘audit and change management category’ Rouzbahani et al. [ 40 ] reported in their study; in the present study, it is merged into a single component due to overlapping major themes.

‘The audit category’ is the final category mentioned in the theme of the elements of HIG patterns identified in the current review. In addition to emphasizing the financial and commercial aspects of the organization, this category documents the information-related activities, thereby enhancing the reliability and integrity of the desired information [ 57 ]. Better system performance and gaining the satisfaction and trust of stakeholders are the end results of audit cycles in the areas of service provision, financial affairs, research results and information assets, as well as audits of changes adopted in practice.

Roles and responsibilities (of individuals) in HIG programs

Officials, policymakers and executives make up the backbone of ‘the roles and responsibilities’ theme. Table 6 describes the levels and responsibilities of each official, as well as their respective duties.

Based on the present study, the roles and responsibilities of HIG are presented separately at three organizational levels, as shown in Figs. 3 , 4 and 5 .

Roles and responsibilities at the organizational senior level

Roles and responsibilities at the organizational middle level

Roles and responsibilities at the organizational operational level

Senior level

The executive director is the first and most crucial role at the senior level. This position is central to the accountability principle of the HIG program and is regarded as the primary position accountable for the program’s design and implementation [ 56 ]. Baskaran et al. believe that information governance principles should be communicated downward through a more robust leadership structure than at the board level [ 68 ]. The key responsibilities of executive director include: ensuring timely and budget-conscious project completion, taking responsibility for regulatory compliance policies and, most importantly, overseeing the development, implementation and revision of policies and procedures to maintain the organization’s integrity [ 22 , 40 , 69 ]. Chief Executive Officers, Chief Information Officers, Chief Legal Officers and Chief Medical Officers are examples of executive directors who may be accountable for smaller task-related departments [ 56 ].

In most cases, the second role and responsibility at the organization’s senior level falls on the senior director of the information governance program. In some studies, this position is referred to as the Caldicott guardian [ 66 , 67 ], who is typically a senior expert in the health field and has the most significant responsibility for protecting the confidentiality of patient information.

The third senior-level role is the core team with executive leadership, composed of representatives from clinical, business and technology domains. This group is responsible for making final decisions on proposed policy or procedure changes and ensuring the proper resolution of operational or data issues [ 22 , 40 ]. Principal members oversee the decision-making principles and protocols, organizational barriers, expansion and strengthening of partnerships and interaction with institutions, the needs of stakeholders, as well as the implementation of governance mechanisms [ 52 , 70 ].

Senior information risk management is the final role identified in the present study for the organization’s senior level. This role, also known as the manager of information-threatening risks, is highly reliant on the regulations and policies of countries. There is a critical emphasis on the importance of stressing context-specific confidentiality and information security protection [ 49 , 67 ].

Middle-level

Managers of organizational information governance must foster an environment conducive to change and provide employees with precise descriptions of individual responsibilities and penalties for violations. In addition, these managers are responsible for assessing the efficacy of training on information governance and identifying the training needs of employees [ 68 ]. Data steward [ 22 , 69 ], data manager or controller [ 40 ] and data protection officer [ 66 , 67 ] are all terms that have been used to refer to the role of data manager. The data manager or steward reports to superiors on all matters concerning data protection. Among these factors, we can mention information governance risks for the organization, privacy concerns and suggestions for potential changes or updates involving personal data processing [ 67 ]. Management of information assets or owners of information assets deals specifically with managing people’s information assets and ensures compliance with policies and laws pertaining to their protection.

Information technology management [ 22 , 67 ], managing the legal and financial department [ 22 , 68 ] and quality and compliance management [ 22 ] are a few examples of roles at the middle level of an organization sporadically mentioned in various studies. The definition of each responsibility depends on each organization’s context and target policies. Information technology management is responsible for developing and implementing appropriate information security methods and protocols to ensure compliance with data protection laws [ 67 ].

Operational-level

The operational level is the third and final organizational level identified in this review, which consists of operations managers and employees who, in practice, must abide by the laws and policies of HIG in conducting their tasks and execute and implement the principles of information governance at this organizational level [ 40 , 67 , 68 ].

Processes in HIG programs

‘The process’, as the final theme emerging from the present review, is a lesser-studied and less-mentioned component of HIG programs. What appears to be the root cause of this phenomenon is the dependence of the process dimensions to the geographical, activity, goal and organizational contexts in which the HIG program is being developed. Renaud’s point of view can be used to corroborate this assertion; he thinks the process is more similar to a delicate tool that needs to be built with care, deployed selectively and used under close supervision in a supportive setting so that human elements are not dehumanized [ 55 ]. Therefore, one could argue that the definition of a process and procedure in information governance and HIG programs depends on the activity’s context, the desired field and the organization’s policies. Indeed, it is impossible to determine a fixed and specific procedure for all programs of HIG. The current review has identified four core categories and nine subcategories within the theme of HIG processes based on different processes narrowly developed and reported in previous studies (Table 7 ). These core categories and subcategories have specified the development and implementation of the information governance program in a comprehensive manner. Policy making, decision-making, planning and implementation begin with an objective assessment of relevant factors such as assets, risk, capability and criteria and progress by a logical sequence that culminates in the monitoring of outcomes following policy implementation and outcome monitoring [ 6 , 38 , 55 , 62 ].

This review compiled and analysed previous research on HIG-related programs in an effort to unravel its various facets and constituents. The objective was providing a comprehensive picture of the studies conducted and the programs developed, as well as suggesting a framework encompassing all existing dimensions. The study was conducted with 37 articles selected from the review of related studies, and the results led to the development of six core categories and 48 subcategories for HIG programs. Figure 6 provides a summary of the findings from the review of the articles.

Summary of dimensions and components of HIG programs

The first theme derived from the review of studies identifies ‘the HIG goals’, comprising six subcategories: providing quality healthcare, providing affordable health services, ensuring equitable access to healthcare information and services, preserving data security, meeting legal obligations and fostering trust. Smallwood defines information governance as ‘comprehensive policies and processes to optimize and use information while keeping it secure and complying with legal and privacy obligations, in line with stated organizational business goals.’ [ 16 ] Moreover, according to Willison et al., the three primary objectives of HIG are to optimize the use of data to achieve business objectives, to maintain data security and to comply with legal and privacy requirements. In addition, gaining and maintaining the trust of patients, stakeholders, data providers and the general public are described as the objectives for using data in public interest research [ 44 ]. According to Kadlec, the main objective of HIG programs is to proactively and effectively manage the increasing volume of information collected and maintained daily [ 22 ]. Various studies have pointed to broader goals for HIG programs, such as improving and maintaining the health of the community [ 38 ], establishing effective and efficient management of information, improving productivity and effectiveness of services [ 39 ], enhancing the desire to maintain a competitive advantage, ensuring better performance and results of organizations and promptly responding to information requests [ 22 ]. As reflected by the focal points of the studies as well as goals focused on local and specific fields and after eliminating some overlaps, the current study has identified six comprehensive goals as categories associated with this theme.

The second theme derived from the studies analysed in this review is ‘the advantages and applications of HIG’, comprised five core categories and 39 subcategories. The core areas of focus for this theme are ‘cost containment and economic growth’, ‘healthcare quality and availability’, ‘healthcare management and policymaking at the macro, inter-organizational and organizational levels’, ‘trust building’ and ‘knowledge management’. It is conceivable that the benefits and applications of HIG are logically consistent with the goals of these programs, and the existence of some overlap between these two primary categories is not unanticipated. In his study, Kloss argues that improving organizational performance, reducing costs, and minimizing risks are the true benefits of information governance in organizations [ 71 ]. Moreover, according to Willison and colleagues, the expectations and, consequently, the applications of HIG programs from the users’ perspective fall into three primary categories: meeting expectations regarding how to perform and provide services, gaining trust in institutions and individuals, and creating belief in the accuracy and value of health services [ 44 ]. Rouzbahani et al. categorized the applications of HIG programs into six categories: improving healthcare and patient safety, reducing costs, enhancing the quality of health information, improving the security and confidentiality of health information, enhancing health information management and boosting the management of healthcare organizations [ 39 ]. Additionally, the results of AHIMA’s case studies identified some other applications of the HIG program’s used by the investigated centres [ 52 ]. The review of the current literature and the examination of the extracted categories indicate the breadth and frequency of applications and benefits of HIG. Given the young age of governance programs in the health field, it can be acknowledged that some potential benefits have not yet been identified. Therefore, it is anticipated that by expanding the application and use of this important strategy, additional benefits will be identified and implemented over time.

The third theme identified from the present review concerns ‘HIG principles’, with 13 categories as follows: transparency, accountability, integrity, protection, compliance, availability, retention, disposal, consent, participation, continuous quality improvement, independence and justice and effectiveness and efficiency. It is acknowledged that the theme of principles and related categories provide a comprehensive set of common speech and behavioural points for a diverse range of HIG program beneficiaries, allowing everyone to progress in line with the information governance project [ 8 ]. The first eight categories were those developed by AHIMA, regarded as fundamental principles in most of the previous studies; the rest of the categories were cumulatively added to literature over time. These principles are among the fundamental topics that have been investigated by research and developed as models of information governance. Accountability, participation and transparency have been cited as principles of health governance by Ibrahimova and Korjonen [ 53 ]. Likewise, Lauriea et al. emphasized the principles of transparency and consent as obvious criteria for protecting privacy [ 47 ]. Informed by the conceptual work of Lauriea and Sethi, Willison et al. developed eight principles for their governance model: transparency, accountability, obedience to the rule of law, honesty, participation and inclusion, impartiality and independence, effectiveness and accountability and continuous quality improvement [ 44 ]. In addition, Rouzbahani et al. have presented a model comprising 12 HIG principles [ 40 ]. In the present study, the categories associated with the theme of HIG principles are presented as exhaustively as possible by incorporating all categories highlighted in literature and models developed, as well as by eliminating their likely overlaps with other categories close to other themes or specific domains. Notably, ethical principles are emphasized alongside professional principles in HIG models, with no weighting or differentiation between the categories presented [ 56 , 59 , 67 ].

‘Components or elements of HIG programs’ is the fourth theme identified in the present review, with 11 distinct categories: laws and standards, policies and guidelines, information management, data governance, information technology governance, information security governance, management risk, human resource management, quality management, project and change management and auditing. In his article, Kadlec introduced several HIG components considered by AHIMA, including quality management, regulations, risk reduction, patient participation and business intelligence [ 22 ]. Williams considered audit and control, risk management and compliance to be essential components of information governance [ 62 ]. Rouzbahani et al. have introduced 13 elements as HIG model components [ 40 ]. Ibrajimova and Korjonen noted seven components of clinical governance, including patient participation, staff management, clinical effectiveness, use of information and information technology, education, risk management and audit, in relation to other governance programs [ 53 ]. In the present review, an attempt was made to consider all these categories associated with elements of HIG programs, and it appeared that all these elements indeed played a determining role. Given the scope of the introduced elements, it is reasonable to conclude that HIG, as an all-encompassing strategy and umbrella term, embraces other governance programs.

The fifth theme associated with HIG programs is ‘the roles and responsibilities’, denoting the introduction of HIG officials and policymakers at three organizational levels: senior, middle and operational levels. At the senior level, four categories and their respective responsibilities are identified: executive director, senior information governance program manager, core team and senior information risk manager. The middle organizational level includes the categories of the information asset manager, data manager and organizational information governance manager. The operational level of an organization consists of operations managers and employees. According to the model proposed and developed by Baskaran et al., the information governance hierarchy consists of six levels: executive director, financial and functional manager, information governance manager, team leaders of operations management, line managers and employees [ 68 ]. Rouzbahani et al. developed a model for Iran’s HIG and incorporated 14 roles and responsibilities into this model, with the Minister of Health assuming the highest role [ 40 ]. Haarbrandt et al. introduced the HiGHmed governance platform, where some of the roles considered included the executive board, supervisory board, technical coordination board, project management office, educational board, support and access committee, ethics working group, advisory board and the general assembly [ 70 ]. With a different view, Ibragimova and Korjonen detailed three groups of library activities that supported clinical and health governance in healthcare organizations: infrastructure (staff and resources); program management (library products and services); and direct participation (needs assessment, committees, audits, HTA, etc.) [ 53 ]. Given that the introduced studies developed their models in distinct domains, the disparity in the hierarchy of responsibilities seems reasonable. The current literature review introduces three levels and nine roles for HIG officials and policymakers, which are the sets of categories introduced in the reviewed studies after eliminating duplicate items and merging the overlapping items.

The final theme introduced in this literature review is that of ‘the processes’ by which HIG programs are developed, implemented and monitored. The associated categories are assessing strategic options, formulating policies, developing plans and tracking progress. In addition, nine subcategories were identified, including asset assessment, risk assessment, capability assessment, criterion assessment, policy development and implementation, internal and external validation, monitoring and change management, stakeholder support, results assessment and reporting. Several studies have described various processes linked to the developed programs in a very limited manner. Governance processes identified in the study by Marcelo et al. include policy and decision-making, planning, resource allocation, coordination and monitoring and evaluation [ 38 ]. While asset identification, risk assessment, policy implementation, capability assessment, procedure development, protection and compatibility, criteria assessment and possible external validation are among the six processes introduced by Williams [ 62 ], Dong et al. have introduced eight further key processes for information governance: data element definition, data integration, information sharing and accountability, information to information and information from information [ 6 ]. Although ‘the processes’ constitute an integral part of HIG programs, it has received less attention than other principles in academic research, because ‘the process’ is highly dependent on the location, activity, goals and overall vision of the organization in which the HIG program is being developed and implemented.

Despite its short history, health information governance has been the focus of several studies which have emphasized its significance, value and necessity. In fact, the development and implementation of national HIG models, particularly in developed nations, is evidence of this claim. The conclusions drawn from a review of the present articles reflect a number of specific aspects. Primarily, the extent and diversity of HIG-related dimensions and components are quite extensive, due to the fact that information governance encompasses the entire health system in the desired area, taking into account all advantages and disadvantages, with the goal of improving the system. Therefore, it requires the experts’ consideration in order to develop impeccable models that function as comprehensively as possible. Second, due to the unique significance and sensitivity of the information within the health organizations, the need to develop HIG models and programs becomes evident, particularly in the present age. Therefore, it can be concluded that developing and underdeveloped nations require the development of information governance models to manage and optimally utilize their health data and information to achieve the national health system goals. Finally, as the COVID-19 pandemic has led to unprecedented death toll since 2020, it appears logical to develop HIG models in order to maintain health system preparation for potential crises in future and to help prevent such tragic outbreaks. For the development of organizational, national and international models, it is our hope that the current literature review serve as a tentative road map and a comprehensive overview by describing the general framework of existing HIG models developed by experts and scientists.

Limitations

Although the scoping review is a valuable tool for comprehensively examining a broad topic such as HIG, it is essential to note the following possible limitations:

A scoping review provides an overview of the dimensions and components of the subject. However, a deeper understanding of these dimensions and components may require more focused studies.

The findings from the scoping review may not directly address a specific problem or answer a focused question.

We encountered difficulties for accessing some databases, but we made a comprehensive effort to search for articles in as many databases as possible.

The study tried to include different types of articles to prevent potential bias.

Additionally, it is important to consider that various factors such as technology, policy, regulation and health system structure influence the HIG landscape and related definitions. Therefore, these definitions may vary depending on the context.

The statistical analysis tool used in the study was not considered a limitation, as our purpose was to organize and structure the studies to more accurately identify the concepts. It is also worth noting that the authors manually coded the entire process in the software.

Availability of data and materials

All data generated or analysed during this study are included in this published article [and its supplementary information files].

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Acknowledgements

This work is part of a PhD thesis in Medical Library and Information Science supported and founded by the Iran University of Medical Science, Tehran, Iran. The ethical code is IR.IUMS.REC.1400.1158. We thank Iran University of Medical Science for supporting this research.

The present study is the funded by Iran University of Medical Sciences(IUMS) (IR.IUMS.REC.1400.1158).

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S.G.H. performed several tasks, including conceptualization, methodology development, using software, formal analysis, investigation, resource allocation, original draft writing and data curation. S.S. undertakes various activities and roles, including supervision, project administration, funding acquisition and writing reviews. S.P. is involved in various activities, including writing – review and editing, as well as validation, conceptualization, data curation and methodology development. A.T. undertakes various activities and roles, including methodology development, conceptualization and writing – review and editing.

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Ghaffari Heshajin, S., Sedghi, S., Panahi, S. et al. A framework for health information governance: a scoping review. Health Res Policy Sys 22 , 109 (2024). https://doi.org/10.1186/s12961-024-01193-9

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The impact of adverse childhood experiences on multimorbidity: a systematic review and meta-analysis

Dhaneesha N. S. Senaratne 1 ,
Bhushan Thakkar 1 ,
Blair H. Smith 1 ,
Tim G. Hales 2 ,
Louise Marryat 3 &
Lesley A. Colvin 1

BMC Medicine volume 22 , Article number: 315 ( 2024 ) Cite this article

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Adverse childhood experiences (ACEs) have been implicated in the aetiology of a range of health outcomes, including multimorbidity. In this systematic review and meta-analysis, we aimed to identify, synthesise, and quantify the current evidence linking ACEs and multimorbidity.

We searched seven databases from inception to 20 July 2023: APA PsycNET, CINAHL Plus, Cochrane CENTRAL, Embase, MEDLINE, Scopus, and Web of Science. We selected studies investigating adverse events occurring during childhood (< 18 years) and an assessment of multimorbidity in adulthood (≥ 18 years). Studies that only assessed adverse events in adulthood or health outcomes in children were excluded. Risk of bias was assessed using the ROBINS-E tool. Meta-analysis of prevalence and dose–response meta-analysis methods were used for quantitative data synthesis. This review was pre-registered with PROSPERO (CRD42023389528).

From 15,586 records, 25 studies were eligible for inclusion (total participants = 372,162). The prevalence of exposure to ≥ 1 ACEs was 48.1% (95% CI 33.4 to 63.1%). The prevalence of multimorbidity was 34.5% (95% CI 23.4 to 47.5%). Eight studies provided sufficient data for dose–response meta-analysis (total participants = 197,981). There was a significant dose-dependent relationship between ACE exposure and multimorbidity ( p < 0.001), with every additional ACE exposure contributing to a 12.9% (95% CI 7.9 to 17.9%) increase in the odds for multimorbidity. However, there was heterogeneity among the included studies ( I 2 = 76.9%, Cochran Q = 102, p < 0.001).

Conclusions

This is the first systematic review and meta-analysis to synthesise the literature on ACEs and multimorbidity, showing a dose-dependent relationship across a large number of participants. It consolidates and enhances an extensive body of literature that shows an association between ACEs and individual long-term health conditions, risky health behaviours, and other poor health outcomes.

Peer Review reports

In recent years, adverse childhood experiences (ACEs) have been identified as factors of interest in the aetiology of many conditions [ 1 ]. ACEs are potentially stressful events or environments that occur before the age of 18. They have typically been considered in terms of abuse (e.g. physical, emotional, sexual), neglect (e.g. physical, emotional), and household dysfunction (e.g. parental separation, household member incarceration, household member mental illness) but could also include other forms of stress, such as bullying, famine, and war. ACEs are common: estimates suggest that 47% of the UK population have experienced at least one form, with 12% experiencing four or more [ 2 ]. ACEs are associated with poor outcomes in a range of physical health, mental health, and social parameters in adulthood, with greater ACE burden being associated with worse outcomes [ 1 , 2 , 3 , 4 , 5 , 6 , 7 , 8 ].

Over a similar timescale, multimorbidity has emerged as a significant heath challenge. It is commonly defined as the co-occurrence of two or more long-term conditions (LTCs), with a long-term condition defined as any physical or mental health condition lasting, or expected to last, longer than 1 year [ 9 ]. Multimorbidity is both common and age-dependent, with a global adult prevalence of 37% that rises to 51% in adults over 60 [ 10 , 11 ]. Individuals living with multimorbidity face additional challenges in managing their health, such as multiple appointments, polypharmacy, and the lack of continuity of care [ 12 , 13 , 14 ]. Meanwhile, many healthcare systems struggle to manage the additional cost and complexity of people with multimorbidity as they have often evolved to address the single disease model [ 15 , 16 ]. As global populations continue to age, with an estimated 2.1 billion adults over 60 by 2050, the pressures facing already strained healthcare systems will continue to grow [ 17 ]. Identifying factors early in the aetiology of multimorbidity may help to mitigate the consequences of this developing healthcare crisis.

Many mechanisms have been suggested for how ACEs might influence later life health outcomes, including the risk of developing individual LTCs. Collectively, they contribute to the idea of ‘toxic stress’; cumulative stress during key developmental phases may affect development [ 18 ]. ACEs are associated with measures of accelerated cellular ageing, including changes in DNA methylation and telomere length [ 19 , 20 ]. ACEs may lead to alterations in stress-signalling pathways, including changes to the immune, endocrine, and cardiovascular systems [ 21 , 22 , 23 ]. ACEs are also associated with both structural and functional differences in the brain [ 24 , 25 , 26 , 27 ]. These diverse biological changes underpin psychological and behavioural changes, predisposing individuals to poorer self-esteem and risky health behaviours, which may in turn lead to increased risk of developing individual LTCs [ 1 , 2 , 28 , 29 , 30 , 31 , 32 ]. A growing body of evidence has therefore led to an increased focus on developing trauma-informed models of healthcare, in which the impact of negative life experiences is incorporated into the assessment and management of LTCs [ 33 ].

Given the contributory role of ACEs in the aetiology of individual LTCs, it is reasonable to suspect that ACEs may also be an important factor in the development of multimorbidity. Several studies have implicated ACEs in the aetiology of multimorbidity, across different cohorts and populations, but to date no meta-analyses have been performed to aggregate this evidence. In this review, we aim to summarise the state of the evidence linking ACEs and multimorbidity, to quantify the strength of any associations through meta-analysis, and to highlight the challenges of research in this area.

Search strategy and selection criteria

We conducted a systematic review and meta-analysis that was prospectively registered in the International Prospective Register of Systematic Reviews (PROSPERO) on 25 January 2023 (ID: CRD42023389528) and reported using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines.

We developed a search strategy based on previously published literature reviews and refined it following input from subject experts, an academic librarian, and patient and public partners (Additional File 1: Table S1). We searched the following seven databases from inception to 20 July 2023: APA PsycNET, CINAHL Plus, Cochrane CENTRAL, Embase, MEDLINE, Scopus, and Web of Science. The search results were imported into Covidence (Veritas Health Innovation, Melbourne, Australia), which automatically identified and removed duplicate entries. Two reviewers (DS and BT) independently performed title and abstract screening and full text review. Discrepancies were resolved by a third reviewer (LC).

Reports were eligible for review if they included adults (≥ 18 years), adverse events occurring during childhood (< 18 years), and an assessment of multimorbidity or health status based on LTCs. Reports that only assessed adverse events in adulthood or health outcomes in children were excluded.

The following study designs were eligible for review: randomised controlled trials, cohort studies, case–control studies, cross-sectional studies, and review articles with meta-analysis. Editorials, case reports, and conference abstracts were excluded. Systematic reviews without a meta-analysis and narrative synthesis review articles were also excluded; however, their reference lists were screened for relevant citations.

Data analysis

Two reviewers (DS and BT) independently performed data extraction into Microsoft Excel (Microsoft Corporation, Redmond, USA) using a pre-agreed template. Discrepancies were resolved by consensus discussion with a third reviewer (LC). Data extracted from each report included study details (author, year, study design, sample cohort, sample size, sample country of origin), patient characteristics (age, sex), ACE information (definition, childhood cut-off age, ACE assessment tool, number of ACEs, list of ACEs, prevalence), multimorbidity information (definition, multimorbidity assessment tool, number of LTCs, list of LTCs, prevalence), and analysis parameters (effect size, model adjustments). For meta-analysis, we extracted ACE groups, number of ACE cases, number of multimorbidity cases, number of participants, odds ratios or regression beta coefficients, and 95% confidence intervals (95% CI). Where data were partially reported or missing, we contacted the study authors directly for further information.

Two reviewers (DS and BT) independently performed risk of bias assessments of each included study using the Risk Of Bias In Non-randomized Studies of Exposures (ROBINS-E) tool [ 34 ]. The ROBINS-E tool assesses the risk of bias for the study outcome relevant to the systematic review question, which may not be the primary study outcome. It assesses risk of bias across seven domains; confounding, measurement of the exposure, participant selection, post-exposure interventions, missing data, measurement of the outcome, and selection of the reported result. The overall risk of bias for each study was determined using the ROBINS-E algorithm. Discrepancies were resolved by consensus discussion.

All statistical analyses were performed in R version 4.2.2 using the RStudio integrated development environment (RStudio Team, Boston, USA). To avoid repetition of participant data, where multiple studies analysed the same patient cohort, we selected the study with the best reporting of raw data for meta-analysis and the largest sample size. Meta-analysis of prevalence was performed with the meta package [ 35 ], using logit transformations within a generalised linear mixed model, and reporting the random-effects model [ 36 ]. Inter-study heterogeneity was assessed and reported using the I 2 statistic, Cochran Q statistic, and Cochran Q p -value. Dose–response meta-analysis was performed using the dosresmeta package [ 37 ] following the method outlined by Greenland and Longnecker (1992) [ 38 , 39 ]. Log-linear and non-linear (restricted cubic spline, with knots at 5%, 35%, 65%, and 95%) random effects models were generated, and goodness of fit was evaluated using a Wald-type test (denoted by X 2 ) and the Akaike information criterion (AIC) [ 39 ].

Patient and public involvement

The Consortium Against Pain Inequality (CAPE) Chronic Pain Advisory Group (CPAG) consists of individuals with lived experiences of ACEs, chronic pain, and multimorbidity. CPAG was involved in developing the research question. The group has experience in systematic review co-production (in progress).

The search identified 15,586 records, of which 25 met inclusion criteria for the systematic review (Fig. 1 ) [ 40 , 41 , 42 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 ]. The summary characteristics can be found in Additional File 1: Table S2. Most studies examined European ( n = 11) or North American ( n = 9) populations, with a few looking at Asian ( n = 3) or South American ( n = 1) populations and one study examining a mixed cohort (European and North American populations). The total participant count (excluding studies performed on the same cohort) was 372,162. Most studies had a female predominance (median 53.8%, interquartile range (IQR) 50.9 to 57.4%).

Flow chart of selection of studies into the systematic review and meta-analysis. Flow chart of selection of studies into the systematic review and meta-analysis. ACE, adverse childhood experience; MM, multimorbidity; DRMA, dose–response meta-analysis

All studies were observational in design, and so risk of bias assessments were performed using the ROBINS-E tool (Additional File 1: Table S3) [ 34 ]. There were some consistent risks observed across the studies, especially in domain 1 (risk of bias due to confounding) and domain 3 (risk of bias due to participant selection). In domain 1, most studies were ‘high risk’ ( n = 24) as they controlled for variables that could have been affected by ACE exposure (e.g. smoking status) [ 40 , 41 , 43 , 44 , 45 , 46 , 47 , 48 , 49 , 50 , 51 , 52 , 53 , 54 , 55 , 56 , 57 , 58 , 59 , 60 , 61 , 62 , 63 , 64 ]. In domain 3, some studies were ‘high risk’ ( n = 7) as participant selection was based on participant characteristics that could have been influenced by ACE exposure (e.g. through recruitment at an outpatient clinic) [ 45 , 48 , 49 , 51 , 53 , 54 , 58 ]. The remaining studies were deemed as having ‘some concerns’ ( n = 18) as participant selection occurred at a time after ACE exposure, introducing a risk of survivorship bias [ 40 , 41 , 42 , 43 , 44 , 46 , 47 , 50 , 52 , 55 , 56 , 57 , 59 , 60 , 61 , 62 , 63 , 64 ].

Key differences in risk of bias were seen in domain 2 (risk of bias due to exposure measurement) and domain 5 (risk of bias due to missing data). In domain 2, some studies were ‘high risk’ as they used a narrow or atypical measure of ACEs ( n = 8) [ 40 , 42 , 44 , 46 , 55 , 56 , 60 , 64 ]; others were graded as having ‘some concerns’ as they used a broader but still incomplete measure of ACEs ( n = 8) [ 43 , 45 , 48 , 49 , 50 , 52 , 54 , 62 ]; the remainder were ‘low risk’ as they used an established or comprehensive list of ACE questions [ 41 , 47 , 51 , 53 , 57 , 58 , 59 , 61 , 63 ]. In domain 5, some studies were ‘high risk’ as they failed to acknowledge or appropriately address missing data ( n = 7) [ 40 , 42 , 43 , 45 , 51 , 53 , 60 ]; others were graded as having ‘some concerns’ as they had a significant amount of missing data (> 10% for exposure, outcome, or confounders) but mitigated for this with appropriate strategies ( n = 6) [ 41 , 50 , 56 , 57 , 62 , 64 ]; the remainder were ‘low risk’ as they reported low levels of missing data ( n = 12) [ 44 , 46 , 47 , 48 , 49 , 52 , 54 , 55 , 58 , 59 , 61 , 63 ].

Most studies assessed an exposure that was ‘adverse childhood experiences’ ( n = 10) [ 41 , 42 , 50 , 51 , 53 , 57 , 58 , 61 , 63 , 64 ], ‘childhood maltreatment’ ( n = 6) [ 44 , 45 , 46 , 48 , 49 , 59 ], or ‘childhood adversity’ ( n = 3) [ 47 , 54 , 62 ]. The other exposures studied were ‘birth phase relative to World War Two’ [ 40 ], ‘childhood abuse’ [ 43 ], ‘childhood disadvantage’ [ 56 ], ‘childhood racial discrimination’ [ 55 ], ‘childhood trauma’ [ 52 ], and ‘quality of childhood’ (all n = 1) [ 60 ]. More than half of studies ( n = 13) did not provide a formal definition of their exposure of choice [ 42 , 43 , 44 , 45 , 49 , 52 , 53 , 54 , 57 , 58 , 60 , 61 , 64 ]. The upper age limit for childhood ranged from < 15 to < 18 years with the most common cut-off being < 18 years ( n = 9). The median number of ACEs measured in each study was 7 (IQR 4–10). In total, 58 different ACEs were reported; 17 ACEs were reported by at least three studies, whilst 33 ACEs were reported by only one study. The most frequently reported ACEs were physical abuse ( n = 19) and sexual abuse ( n = 16) (Table 1 ). The exposure details for each study can be found in Additional File 1: Table S4.

Thirteen studies provided sufficient data to allow for a meta-analysis of the prevalence of exposure to ≥ 1 ACE; the pooled prevalence was 48.1% (95% CI 33.4 to 63.1%, I 2 = 99.9%, Cochran Q = 18,092, p < 0.001) (Fig. 2 ) [ 41 , 43 , 44 , 46 , 47 , 49 , 50 , 52 , 53 , 57 , 59 , 61 , 63 ]. Six studies provided sufficient data to allow for a meta-analysis of the prevalence of exposure to ≥ 4 ACEs; the pooled prevalence was 12.3% (95% CI 3.5 to 35.4%, I 2 = 99.9%, Cochran Q = 9071, p < 0.001) (Additional File 1: Fig. S1) [ 46 , 50 , 51 , 53 , 59 , 63 ].

Meta-analysis of prevalence of exposure to ≥ 1 adverse childhood experiences. Meta-analysis of prevalence of exposure to ≥ 1 adverse childhood experience. ACE, adverse childhood experience; CI, confidence interval

Thirteen studies explicitly assessed multimorbidity as an outcome, and all of these defined the threshold for multimorbidity as the presence of two or more LTCs [ 40 , 41 , 42 , 44 , 46 , 47 , 50 , 55 , 57 , 60 , 61 , 62 , 64 ]. The remaining studies assessed comorbidities, morbidity, or disease counts [ 43 , 45 , 48 , 49 , 51 , 52 , 53 , 54 , 56 , 58 , 59 , 63 ]. The median number of LTCs measured in each study was 14 (IQR 12–21). In total, 115 different LTCs were reported; 36 LTCs were reported by at least three studies, whilst 63 LTCs were reported by only one study. Two studies did not report the specific LTCs that they measured [ 51 , 53 ]. The most frequently reported LTCs were hypertension ( n = 22) and diabetes ( n = 19) (Table 2 ). Fourteen studies included at least one mental health LTC. The outcome details for each study can be found in Additional File 1: Table S5.

Fifteen studies provided sufficient data to allow for a meta-analysis of the prevalence of multimorbidity; the pooled prevalence was 34.5% (95% CI 23.4 to 47.5%, I 2 = 99.9%, Cochran Q = 24,072, p < 0.001) (Fig. 3 ) [ 40 , 41 , 44 , 46 , 47 , 49 , 50 , 51 , 52 , 55 , 57 , 58 , 59 , 60 , 63 ].

Meta-analysis of prevalence of multimorbidity. Meta-analysis of prevalence of multimorbidity. CI, confidence interval; LTC, long-term condition; MM, multimorbidity

All studies reported significant positive associations between measures of ACE and multimorbidity, though they varied in their means of analysis and reporting of the relationship. Nine studies reported an association between the number of ACEs (variably considered as a continuous or categorical parameter) and multimorbidity [ 41 , 43 , 46 , 47 , 50 , 56 , 57 , 61 , 64 ]. Eight studies reported an association between the number of ACEs and comorbidity counts in specific patient populations [ 45 , 48 , 49 , 51 , 53 , 58 , 59 , 63 ]. Six studies reported an association between individual ACEs or ACE subgroups and multimorbidity [ 42 , 43 , 44 , 47 , 55 , 62 ]. Two studies incorporated a measure of frequency within their ACE measurement tool and reported an association between this ACE score and multimorbidity [ 52 , 54 ]. Two studies reported an association between proxy measures for ACEs and multimorbidity; one reported ‘birth phase relative to World War Two’, and the other reported a self-report on the overall quality of childhood [ 40 , 60 ].

Eight studies, involving a total of 197,981 participants, provided sufficient data (either in the primary text, or following author correspondence) for quantitative synthesis [ 41 , 46 , 47 , 49 , 50 , 51 , 57 , 58 ]. Log-linear (Fig. 4 ) and non-linear (Additional File 1: Fig. S2) random effects models were compared for goodness of fit: the Wald-type test for linearity was non-significant ( χ 2 = 3.7, p = 0.16) and the AIC was lower for the linear model (− 7.82 vs 15.86) indicating that the log-linear assumption was valid. There was a significant dose-dependent relationship between ACE exposure and multimorbidity ( p < 0.001), with every additional ACE exposure contributing to a 12.9% (95% CI 7.9 to 17.9%) increase in the odds for multimorbidity ( I 2 = 76.9%, Cochran Q = 102, p < 0.001).

Dose–response meta-analysis of the relationship between adverse childhood experiences and multimorbidity. Dose–response meta-analysis of the relationship between adverse childhood experiences and multimorbidity. Solid black line represents the estimated relationship; dotted black lines represent the 95% confidence intervals for this estimate. ACE, adverse childhood experience

This systematic review and meta-analysis synthesised the literature on ACEs and multimorbidity and showed a dose-dependent relationship across a large number of participants. Each additional ACE exposure contributed to a 12.9% (95% CI 7.9 to 17.9%) increase in the odds for multimorbidity. This adds to previous meta-analyses that have shown an association between ACEs and individual LTCs, health behaviours, and other health outcomes [ 1 , 28 , 31 , 65 , 66 ]. However, we also identified substantial inter-study heterogeneity that is likely to have arisen due to variation in the definitions, methodology, and analysis of the included studies, and so our results should be interpreted with these limitations in mind.

Although 25 years have passed since the landmark Adverse Childhood Experiences Study by Felitti et al. [ 3 ], there is still no consistent approach to determining what constitutes an ACE. This is reflected in this review, where fewer than half of the 58 different ACEs ( n = 25, 43.1%) were reported by more than one study and no study reported more than 15 ACEs. Even ACE types that are commonly included are not always assessed in the same way [ 67 ], and furthermore, the same question can be interpreted differently in different contexts (e.g. physical punishment for bad behaviour was socially acceptable 50 years ago but is now considered physical abuse in the UK). Although a few validated questionnaires exist, they often focus on a narrow range of ACEs; for example, the childhood trauma questionnaire demonstrates good reliability and validity but focuses on interpersonal ACEs, missing out on household factors (e.g. parental separation), and community factors (e.g. bullying) [ 68 ]. Many studies were performed on pre-existing research cohorts or historic healthcare data, where the study authors had limited or no influence on the data collected. As a result, very few individual studies reported on the full breadth of potential ACEs.

ACE research is often based on ACE counts, where the types of ACEs experienced are summed into a single score that is taken as a proxy measure of the burden of childhood stress. The original Adverse Childhood Experiences Study by Felitti et al. took this approach [ 3 ], as did 17 of the studies included in this review and our own quantitative synthesis. At the population level, there are benefits to this: ACE counts provide quantifiable and comparable metrics, they are easy to collect and analyse, and in many datasets, they are the only means by which an assessment of childhood stress can be derived. However, there are clear limitations to this method when considering experiences at the individual level, not least the inherent assumptions that different ACEs in the same person are of equal weight or that the same ACE in different people carries the same burden of childhood stress. This limitation was strongly reinforced by our patient and public involvement group (CPAG). Two studies in this review incorporated frequency within their ACE scoring system [ 52 , 54 ], which adds another dimension to the assessment, but this is insufficient to understand and quantify the ‘impact’ of an ACE within an epidemiological framework.

The definitions of multimorbidity were consistent across the relevant studies but the contributory long-term conditions varied. Fewer than half of the 115 different LTCs ( n = 52, 45.2%) were reported by more than one study. Part of the challenge is the classification of healthcare conditions. For example, myocardial infarction is commonly caused by coronary heart disease, and both are a form of heart disease. All three were reported as LTCs in the included studies, but which level of pathology should be reported? Mental health LTCs were under-represented within the condition list, with just over half of the included studies assessing at least one ( n = 14, 56.0%). Given the strong links between ACEs and mental health, and the impact of mental health on quality of life, this is an area for improvement in future research [ 31 , 32 ]. A recent Delphi consensus study by Ho et al. may help to address these issues: following input from professionals and members of the public they identified 24 LTCs to ‘always include’ and 35 LTCs to ‘usually include’ in multimorbidity research, including nine mental health conditions [ 9 ].

As outlined in the introduction, there is a strong evidence base supporting the link between ACEs and long-term health outcomes, including specific LTCs. It is not unreasonable to extrapolate this association to ACEs and multimorbidity, though to our knowledge, the pathophysiological processes that link the two have not been precisely identified. However, similar lines of research are being independently followed in both fields and these areas of overlap may suggest possible mechanisms for a relationship. For example, both ACEs and multimorbidity have been associated with markers of accelerated epigenetic ageing [ 69 , 70 ], mitochondrial dysfunction [ 71 , 72 ], and inflammation [ 22 , 73 ]. More work is required to better understand how these concepts might be linked.

This review used data from a large participant base, with information from 372,162 people contributing to the systematic review and information from 197,981 people contributing to the dose–response meta-analysis. Data from the included studies originated from a range of sources, including healthcare settings and dedicated research cohorts. We believe this is of a sufficient scale and variety to demonstrate the nature and magnitude of the association between ACEs and multimorbidity in these populations.

However, there are some limitations. Firstly, although data came from 11 different countries, only two of those were from outside Europe and North America, and all were from either high- or middle-income countries. Data on ACEs from low-income countries have indicated a higher prevalence of any ACE exposure (consistently > 70%) [ 74 , 75 ], though how well this predicts health outcomes in these populations is unknown.

Secondly, studies in this review utilised retrospective participant-reported ACE data and so are at risk of recall and reporting bias. Studies utilising prospective assessments are rare and much of the wider ACE literature is open to a similar risk of bias. To date, two studies have compared prospective and retrospective ACE measurements, demonstrating inconsistent results [ 76 , 77 ]. However, these studies were performed in New Zealand and South Africa, two countries not represented by studies in our review, and had relatively small sample sizes (1037 and 1595 respectively). It is unclear whether these are generalisable to other population groups.

Thirdly, previous research has indicated a close relationship between ACEs and childhood socio-economic status (SES) [ 78 ] and between SES and multimorbidity [ 10 , 79 ]. However, the limitations of the included studies meant we were unable to separate the effect of ACEs from the effect of childhood SES on multimorbidity in this review. Whilst two studies included childhood SES as covariates in their models, others used measures from adulthood (such as adulthood SES, income level, and education level) that are potentially influenced by ACEs and therefore increase the risk of bias due to confounding (Additional File 1: Table S3). Furthermore, as for ACEs and multimorbidity, there is no consistently applied definition of SES and different measures of SES may produce different apparent effects [ 80 ]. The complex relationships between ACEs, childhood SES, and multimorbidity remain a challenge for research in this field.

Fourthly, there was a high degree of heterogeneity within included studies, especially relating to the definition and measurement of ACEs and multimorbidity. Whilst this suggests that our results should be interpreted with caution, it is reassuring to see that our meta-analysis of prevalence estimates for exposure to any ACE (48.1%) and multimorbidity (34.5%) are in line with previous estimates in similar populations [ 2 , 11 ]. Furthermore, we believe that the quantitative synthesis of these relatively heterogenous studies provides important benefit by demonstrating a strong dose–response relationship across a range of contexts.

Our results strengthen the evidence supporting the lasting influence of childhood conditions on adult health and wellbeing. How this understanding is best incorporated into routine practice is still not clear. Currently, the lack of consistency in assessing ACEs limits our ability to understand their impact at both the individual and population level and poses challenges for those looking to incorporate a formalised assessment. Whilst most risk factors for disease (e.g. blood pressure) are usually only relevant within healthcare settings, ACEs are relevant to many other sectors (e.g. social care, education, policing) [ 81 , 82 , 83 , 84 ], and so consistency of assessment across society is both more important and more challenging to achieve.

Some have suggested that the evidence for the impact of ACEs is strong enough to warrant screening, which would allow early identification of potential harms to children and interventions to prevent them. This approach has been implemented in California, USA [ 85 , 86 , 87 ]. However, this is controversial, and others argue that screening is premature with the current evidence base [ 88 , 89 , 90 ]. Firstly, not everyone who is exposed to ACEs develops poor health outcomes, and it is not clear how to identify those who are at highest risk. Many people appear to be vulnerable, with more adverse health outcomes following ACE exposure than those who are not exposed, whilst others appear to be more resilient, with good health in later life despite multiple ACE exposures [ 91 ] It may be that supportive environments can mitigate the long-term effects of ACE exposure and promote resilience [ 92 , 93 ]. Secondly, there are no accepted interventions for managing the impact of an identified ACE. As identified above, different ACEs may require input from different sectors (e.g. healthcare, social care, education, police), and so collating this evidence may be challenging. At present, ACEs screening does not meet the Wilson-Jungner criteria for a screening programme [ 94 ].

Existing healthcare systems are poorly designed to deal with the complexities of addressing ACEs and multimorbidity. Possibly, ways to improve this might be allocating more time per patient, prioritising continuity of care to foster long-term relationships, and greater integration between different healthcare providers (most notably primary vs secondary care teams, or physical vs mental health teams). However, such changes often demand additional resources (e.g. staff, infrastructure, processes), which are challenging to source when existing healthcare systems are already stretched [ 95 , 96 ]. Nevertheless, increasing the spotlight on ACEs and multimorbidity may help to focus attention and ultimately bring improvements to patient care and experience.

ACEs are associated with a range of poor long-term health outcomes, including harmful health behaviours and individual long-term conditions. Multimorbidity is becoming more common as global populations age, and it increases the complexity and cost of healthcare provision. This is the first systematic review and meta-analysis to synthesise the literature on ACEs and multimorbidity, showing a statistically significant dose-dependent relationship across a large number of participants, albeit with a high degree of inter-study heterogeneity. This consolidates and enhances an increasing body of data supporting the role of ACEs in determining long-term health outcomes. Whilst these observational studies do not confirm causality, the weight and consistency of evidence is such that we can be confident in the link. The challenge for healthcare practitioners, managers, policymakers, and governments is incorporating this body of evidence into routine practice to improve the health and wellbeing of our societies.

Availability of data and materials

No additional data was generated for this review. The data used were found in the referenced papers or provided through correspondence with the study authors.

Abbreviations

Adverse childhood experience

Akaike information criterion

CONSORTIUM Against pain inequality

Confidence interval

Chronic pain advisory group

Interquartile range

Long-term condition

International prospective register of systematic reviews

Preferred reporting items for systematic reviews and meta-analyses

Risk of bias in non-randomised studies of exposures

Socio-economic status

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Acknowledgements

The authors thank the members of the CAPE CPAG patient and public involvement group for providing insights gained from relevant lived experiences.

The authors are members of the Advanced Pain Discovery Platform (APDP) supported by UK Research & Innovation (UKRI), Versus Arthritis, and Eli Lilly. DS is a fellow on the Multimorbidity Doctoral Training Programme for Health Professionals, which is supported by the Wellcome Trust [223499/Z/21/Z]. BT, BS, and LC are supported by an APDP grant as part of the Partnership for Assessment and Investigation of Neuropathic Pain: Studies Tracking Outcomes, Risks and Mechanisms (PAINSTORM) consortium [MR/W002388/1]. TH and LC are supported by an APDP grant as part of the Consortium Against Pain Inequality [MR/W002566/1]. The funding bodies had no role in study design, data collection/analysis/interpretation, report writing, or the decision to submit the manuscript for publication.

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DS and LC contributed to review conception and design. DC, BT, BS, TH, LM, and LC contributed to search strategy design. DS and BT contributed to study selection and data extraction, with input from LC. DS and BT accessed and verified the underlying data. DS conducted the meta-analyses, with input from BT, BS, TH, LM, and LC. DS drafted the manuscript, with input from DC, BT, BS, TH, LM, and LC. DC, BT, BS, TH, LM, and LC read and approved the final manuscript.

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12916_2024_3505_moesm1_esm.docx.

Additional File 1: Tables S1-S5 and Figures S1-S2. Table S1: Search strategy, Table S2: Characteristics of studies included in the systematic review, Table S3: Risk of bias assessment (ROBINS-E), Table S4: Exposure details (adverse childhood experiences), Table S5: Outcome details (multimorbidity), Figure S1: Meta-analysis of prevalence of exposure to ≥4 adverse childhood experiences, Figure S2: Dose-response meta-analysis of the relationship between adverse childhood experiences and multimorbidity (using a non-linear/restricted cubic spline model).

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Senaratne, D.N.S., Thakkar, B., Smith, B.H. et al. The impact of adverse childhood experiences on multimorbidity: a systematic review and meta-analysis. BMC Med 22 , 315 (2024). https://doi.org/10.1186/s12916-024-03505-w

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Experiences of intensive treatment for people with eating disorders: a systematic review and thematic synthesis

Hannah Webb 1 ,
Maria Griffiths 1 &
Ulrike Schmidt 2 , 3

Journal of Eating Disorders volume 12 , Article number: 115 ( 2024 ) Cite this article

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Metrics details

Eating disorders are complex difficulties that impact the individual, their supporters and society. Increasing numbers are being admitted to intensive treatment settings (e.g., for inpatient treatment, day-patient treatment or acute medical treatment). The lived experience perspectives of what helps and hinders eating disorder recovery during intensive treatment is an emerging area of interest. This review aims to explore patients’ perspectives of what helps and hinders recovery in these contexts.

A systematic review was conducted to identify studies using qualitative methods to explore patients’ experiences of intensive treatment for an eating disorder. Article quality was assessed using the Critical Appraisal Skill Programme (CASP) checklist and thematic synthesis was used to analyse the primary research and develop overarching analytical themes.

Thirty articles met inclusion criteria and were included in this review. The methodological quality was mostly good. Thematic synthesis generated six main themes; collaborative care supports recovery; a safe and terrifying environment; negotiating identity; supporting mind and body; the need for specialist support; and the value of close others. The included articles focused predominantly on specialist inpatient care and were from eight different countries. One clear limitation was that ethnicity data were not reported in 22 out of the 30 studies. When ethnicity data were reported, participants predominantly identified as white.

Conclusions

This review identifies that a person-centred, biopsychosocial approach is necessary throughout all stages of eating disorder treatment, with support from a sufficiently resourced and adequately trained multidisciplinary team. Improving physical health remains fundamental to eating disorder recovery, though psychological support is also essential to understand what causes and maintains the eating disorder and to facilitate a shift away from an eating disorder dominated identity. Carers and peers who instil hope and offer empathy and validation are valuable additional sources of support. Future research should explore what works best for whom and why, evaluating patient and carer focused psychological interventions and dietetic support during intensive treatment. Future research should also explore the long-term effects of, at times, coercive and distressing treatment practices and determine how to mitigate against potential iatrogenic harm.

Plain English summary

Some people with eating disorders will need intensive treatment (e.g., inpatient treatment, day-patient treatment or acute medical treatment) during the course of their illness. Understanding what helps and hinders eating disorder recovery during intensive treatment is an important part of developing effective interventions. This review summarises research exploring people with eating disorders’ perspectives of intensive treatment, with the aim of identifying what helps and hinders eating disorder recovery. We searched in scientific databases for all published qualitative studies that explored people with eating disorders’ perspectives of intensive treatment. Thirty studies meet the inclusion criteria of this literature review. The results sections of these studies were analysed by extracting relevant findings relating to eating disorder recovery. We found that a person-centred, holistic approach is necessary throughout all stages of eating disorder treatment, with support from healthcare professionals and carers with specialist knowledge of how to support people with eating disorders. Improving physical health is fundamental to eating disorder recovery. However, psychological support is also essential to help people with eating disorders to understand what causes and maintains the eating disorder and support them to move away from an eating disorder dominated identity. Areas for future research are outlined.

Introduction

Eating disorders (EDs) are a group of mental health disorders, such as anorexia nervosa (AN), bulimia nervosa (BN), and binge eating disorder (BED), that are characterised by severe disturbances of attitudes and behaviours related to food, weight, and shape, and that seriously impact mental and physical health [ 1 ]. ED onset is typically during late adolescence and early adulthood [ 2 ]. With the potential to impact every organ system, EDs can be life threatening, reportedly having the highest mortality rate of all mental health disorders [ 3 , 4 , 5 ]. EDs are burdensome to the individual, their supporters and society [ 6 ]. Covid-19 has only exacerbated this burden: increases in incidence rates, ED symptomatology and hospital admissions have been widely reported [ 7 , 8 , 9 ].

Treatment for people with eating disorders (PwEDs) depends on the severity and chronicity of difficulty [ 10 ]. Most PwEDs are first offered outpatient psychological therapy, which can be complemented with pharmacotherapy, medical monitoring, nursing and/or dietetic support [ 11 ]. For those who do not respond to outpatient treatment, or whose ED cannot be managed safely as an outpatient, intensive treatment may be offered. This typically ranges from day-patient treatment or partial hospitalisation to inpatient or residential treatment in an ED or general psychiatric unit. Though varied, these more intensive treatments typically involve greater multidisciplinary input and direct meal supervision [ 11 ]. Alongside specialist intensive treatments, increasing numbers of PwEDs are being admitted to general medical settings to manage the medical complications associated with EDs [ 12 , 13 ]. Care in medical settings is highly variable, with varying levels of specialist input [ 11 , 13 ]. Importantly, whilst the relative merits of each form of intensive treatment continue to be debated, demand appears to be rising internationally [ 14 , 15 , 16 ].

Clinicians supporting PwEDs encounter challenges due to the egosyntonic nature of the illness [ 17 ]. Many people attach positive value to their ED [ 18 ], as it gives a perceived sense of control, and means of obtaining identity and avoiding negative affect [ 19 , 20 ]. Consequently, PwEDs are often ambivalent towards treatment and display low motivation to change [ 21 , 22 ]. Current treatment efficacy is modest [ 23 ]. A recent rapid review suggested between 30% and 41% of PwEDs relapse within two years of receiving treatment and that less than half achieve recovery at long-term follow up [ 24 ]. Furthermore, across all EDs, 62–70% of people who have received inpatient treatment still meet full diagnostic criteria or have remaining ED symptoms at long-term follow-up [ 6 ].

To improve treatment outcomes for PwEDs, it is vital that we better understand the lived experiences of those who use ED services [ 25 , 26 ]. As such, emerging research explores lived experience perspectives of ED treatment. For example, Babb and colleagues [ 27 ] reviewed qualitative studies exploring PwEDs’ general experiences of ED treatment. This review called for more individualised care and psychological support. Whilst valuable, it did not specifically focus on recovery. It also only identified studies exploring inpatient and outpatient experiences. Yet, some studies have explored PwEDs’ perspectives of other treatment settings, such as day-patient or acute medical settings, which may add important insights. The lifespan approach taken in this review may also mean that a review focused on adult populations is warranted as there are differences in ED treatment accessibility and delivery between child, adolescent and adult services. For instance, the duration of untreated ED (DUED) varies strongly between age groups, with younger age groups seeing shorter DUEDs [ 28 ] and in child and adolescent ED treatment, greater emphasis is placed on family involvement [ 29 ].

Other reviews seek to conceptualise ED recovery from lived experience perspectives. These have led to recovery being described as a complex psychological process that requires commitment, responsibility, development of insight into the function and consequences of the ED, acceptance by others and of the self, and development of meaningful relationships [ 30 ]. Recovery has also been said to include remission of ED symptoms alongside psychological well-being and adaptability, and involves hope, reclaiming identity, meaning and purpose, empowerment and self-compassion as key components [ 31 , 32 , 33 ]. Whilst valuable findings, these reviews do not focus specifically on what aspects of treatment help or hinder recovery.

More recently, two qualitative reviews synthesised literature exploring the lived experiences of inpatient treatment for all EDs [ 34 ] and AN only [ 35 ] within ED-specific treatment settings. These reviews highlight the complex and multifaceted nature of inpatient experiences and the importance of person-centred treatment that involves medical and psychological intervention [ 34 , 35 ]. Undeniably, these reviews provide insight into a neglected area of research. However, they include differing all-age studies and exclude studies exploring different intensities and aspects of intensive treatment (such as the experience of involuntary admission). Yet, many PwEDs move through different intensive treatments, some outside ED-specific treatment settings, and all aspects of intensive treatment may relate to recovery.

ED recovery is a process rather than a singular event, which can begin before and continue beyond inpatient treatment. Therefore, this review aims to extend previous reviews exploring the lived experiences of inpatient treatment. With a focus on recovery, it aims to elucidate what helps and hinders recovery for adults with EDs across all types and aspects of intensive treatment and to provide recommendations for research and clinical practice.

Search strategy

This systematic review was conducted in line with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines [ 36 ] and was pre-registered on PROSPERO (ID: CRD42023426052).

Systematic literature searches were carried out using electronic databases (EMBASE, MEDLINE, PsychINFO, and Web of Science), searched from conception to 6th June 2023. Search terms and inclusion and exclusion criteria were formed using the ‘Sample, Phenomenon of Interest, Design, Evaluation and Research type’ (SPIDER) tool [ 37 ], outlined in Table 1 . The search strategy employed was informed by preliminary internet searches and previous reviews. It covered four concepts: [ 1 ] EDs, [ 2 ] intensive treatment, [ 3 ] qualitative methodology, and [ 4 ] lived experiences. Various combinations of search terms were trialled before settling on a broad search strategy that explored all free text to maximise search sensitivity.

Study selection and eligibility criteria

The first author completed the literature search, which yielded 2590 articles. Duplicates were removed, and the titles and abstracts of the remaining articles were screened against predetermined inclusion and exclusion criteria, outlined in Table 2 . Qualitative or mixed method studies (if qualitative results were reported separately) that explored adults’ experiences or views of any aspect of intensive treatment directly related to an eating disorder diagnosis were considered for eligibility. Only studies originally published in English and in peer-reviewed journals were accepted. A decision was made not to search the grey literature due to time constraints and wanting to ensure adequate space and consideration was given to the included studies. Further, grey literature studies are not necessarily subject to the same rigorous academic peer-review processes as non-grey literature studies. Nonetheless, some potentially relevant studies may have been missed.

Eligibility screening resulted in 71 articles which were read in full. Full-text screening excluded a further 45 articles, resulting in a total of 26 articles. The first author also screened the reference lists of included manuscripts to identify other studies that may have met the inclusion criteria and conducted additional searches through Google Scholar throughout the review process. This resulted in an additional four articles, meaning that 30 articles were included in this review. Throughout this process, any discrepancies were discussed with the second author (MG) until a consensus was reached. The complete procedure is detailed in the PRISMA diagram (Fig. 1 ).

PRISMA Flow Diagram

Quality assessment

Though what constitutes “validity” or “quality” in qualitative research is debated, quality appraisal remains a crucial part of any qualitative review [ 38 ]. The Critical Appraisal Skill Programme (CASP) checklist, a commonly used research appraisal tool, offers ten questions that facilitate assessment of qualitative studies. The Cochrane Qualitative and Implementation Methods Group recommends to avoid providing numerical scores, as CASP is not recommended as an absolute score of quality [ 39 ]. Instead, studies are considered according to whether criteria are: “yes well addressed”; “can’t tell”; or “no not addressed”. In this review, “can’t tell” was chosen when insufficient information was reported to make a judgement, as quality issues may be due to poor methodology and/or inadequate reporting [ 40 , 41 ]. The first author conducted the quality assessment and any ambiguities were discussed with the review team until a consensus was reached.

Given the large number of studies in this review, whilst absolute scores were avoided, quality appraisal was used to organise the thematic synthesis, as has been recommended previously [e.g., 41 , 42 ]. This meant studies ( n = 10) for which “yes” was chosen for all ten questions were first reviewed to generate the coding framework. This was used to code the remaining studies. When particularly meaningful, new codes were generated. No studies were deemed to be low quality, as all studies provided valuable contributions to a limited evidence base. If there had been low quality studies, no new codes would have been generated, though these studies would not have been excluded.

Method of synthesis

Thematic synthesis was chosen to integrate findings of multiple qualitative studies to answer a specific review question and extend what is already known [ 43 ]. All text from “results” or “findings” sections, and any findings in abstracts, were extracted and treated as data. Thematic synthesis followed three iterative stages. Stage one involved line-by-line coding of text according to meaning and content. Stage two involved grouping of codes into hierarchical structures, to develop descriptive themes that remained data-driven and close to the primary studies. Stage three involved the generation of analytical themes through inference of descriptive themes, which go beyond the primary studies to generate new interpretive explanations.

Reflexivity

Reflexivity, the conscious, collaborative appraisal and critique of how one’s subjectivity and context influence the research processes, is an essential component of qualitative research [ 44 , 45 ]. We, the three authors, have psychology/psychiatry and academic and clinical backgrounds. The first author is a trainee clinical psychologist with lived experience of an ED as well as academic and clinical experience in EDs/mental health. The second author is a clinical psychologist with academic and clinical experience in mental health, in particular with adults with experiences of psychosis. The third author is a consultant psychiatrist and expert in the field of EDs, with experience of developing national and international initiatives to improve ED policy and practice. One of us was an insider to the experience of ED treatment and we are all insiders to a culture of working in mental health services with often high levels of need and limited resource. We made every attempt to ensure potential biases (e.g., our combined clinical, academic and experiential understanding that intensive treatment can be challenging for many) were kept in awareness and endeavored to pay attention to the full range of findings. Coding extracts and theme developments were discussed with all authors to check for disagreements or uncertainties before being finalised. Additionally, the first and second author met for monthly supervision to discuss the review development and analysis, and to support a continuous process of self-reflection. This collaborative approach supported development of themes that captured important nuances in the lived experiences of ED treatment, for example identifying the tension between physical versus psychological support. Nonetheless, as with all qualitative research, a different group of researchers who sought to answer the same research question may have extracted different themes from the data.

Studies identified

Thirty papers were identified as relevant. These are summarised in Table 3 .

Included studies totalled 495 participants ranging from 17 to 56 years. 96% identified as female, 2% identified as male, 0.4% identified as non-binary and 0.6% were not reported. 65% of participants were diagnosed with AN, 6.3% with BN, 0.6% with BED, 9.1% with EDNOS, 0.4% with OSFED, and 18.6% as missing or not reported. Ethnicity data were not reported in 22 studies. When ethnicity data were reported, 98.9% of participants identified as white (94/95 participants in reporting studies) and 1% identified as Other.

Included studies were predominantly conducted in the United Kingdom ( N = 17). Other countries included Australia ( N = 4), Canada ( N = 3), Sweden ( N = 2), Denmark ( N = 1), Israel ( N = 1), Norway ( N = 1) and the USA ( N = 1). Most studies focused on specialist inpatient units only ( N = 19), with three studies focusing on inpatient and day-patient settings and one study focusing on inpatient and general psychiatric units. Three studies focused on day-patient settings only and two studies focused on medical settings only. One study focused on intensive community treatment and one study did not report the setting (though it focused on experiences in intensive settings). Most (27/30) studies did not report length of stay and those that did reported a wide range of 0.14 to 27 months.

Recruitment was carried out using various methods, inviting both current and past receivers of treatment. A range of data analysis approaches were used, though half of the studies used thematic analysis. Most studies ( N = 23) used semi-structured interviews. Other data collection methods included open-ended questions in discharge/feedback questionnaires, narrative interviews, focus groups, diary entries and medical documents.

Quality appraisal

Included studies were of variable quality, but none were considered inadequate (see Table 4 ). All studies provided clear statements of the aims and appropriateness of qualitative methodology. The research design was unclear in three studies [ 46 , 47 , 48 ] and one study [ 49 ] did not explain consideration of ethics. Ten studies did not describe their recruitment strategy and thirteen studies did not provide any/adequate consideration of the relationship between the researcher(s) and participants. This contrasted with many studies that provided clear descriptions of their recruitment strategy (e.g., [ 50 , 51 ]) and researcher reflexivity (e.g., [ 52 , 53 ]). In line with their study methodology, some studies provided more descriptive analyses (e.g., [ 54 , 55 ]) and others provided more in-depth analyses (e.g., [ 48 , 49 , 56 ]). Studies that did not provide sufficient qualitative data for the quality of their analysis to be considered and analysed as part of this review were excluded at the point of screening. All studies showed sufficient rigour, providing clear statements of findings and situating these within the wider literature.

Studies varied significantly in the time-point of data collection (e.g., during treatment, immediately after, retrospectively or a combination), with only some reflecting on the chosen time-point(s). Most studies focused on experiences relating to specialist inpatient treatment and only some adequately described the treatment setting. Moreover, several studies did not provide key participant characteristics, samples were not representative and no study focused exclusively on any ED other than AN.

Thematic synthesis

Six themes were generated from the data: Collaborative Care Supports Recovery; A Safe and Terrifying Environment; Negotiating Identity; Supporting Mind and Body; The Need for Specialist Support; and The Value of Close Others. Themes and subthemes are outlined in Table 5 and discussed below.

Theme 1: collaborative care supports recovery

Active involvement in treatment.

Collaborative care supported recovery across intensive settings. “ Working together ” [ 51 ] and supporting PwEDs to “ make their own decisions ” [ 50 ] strengthened participants’ motivation. However, collaboration was “ often felt to be absent ” [ 54 ]. Several studies identified that participants felt “ alienated from the decision-making process ” [ 55 ], especially those admitted involuntarily. Feeling unheard negatively impacted upon self-esteem and anxiety. Lack of transparency between PwEDs and treatment providers affected treatment experiences and subsequent recovery. Lack of clarity about ward rounds led to “power differences… and anxiety ” [ 57 ]. Participants in both studies exploring medical settings voiced not knowing who was chiefly responsible for their care and “ feeling deceived or given a punishment ” [ 55 ] when starting a refeeding protocol or being detained, due to lack of information. This negatively impacted upon treatment engagement. One study identified that providers should make expectations and regimes clearer and repeat them frequently “ to ensure patients have time to process and understand them ” [ 50 ]. In another study, the option to self-admit (to inpatient treatment) strengthened participants’ agency and motivation, and promoted partnership. However, for some, it risked too much decision-making power – “ too much say… it’ll be bad for me ” [ 56 ].

Collaboration was particularly key during transitions of care. Lack of information and “ uncertainty in what was going to happen ” [ 53 ] contributed to fear and feeling overwhelmed, hindering ongoing recovery. Many studies concurred that “ a graded and planned discharge helped… [re] integration ” [ 58 ]. This involved “ a phased , supportive approach ” [ 61 ], “ communication… with clear goals ” [ 54 ] and consideration of potential “ obstacles and challenges ” [ 63 ]. Several studies identified that treatment intensity dropped too quickly, that little or no further support was offered, or that participants were placed on lengthy outpatient waitlists. Continuity of support was essential.

Temporarily handing over responsibility

Whilst collaborative care generally supported recovery, there were instances in which, for short periods of time, participants found it helpful to not be so involved in care decisions. Several inpatient studies identified that, whilst challenging, many participants actually felt “ saved ” [ 58 ] when providers took responsibility (e.g., implementing clear boundaries around dietary change). “ Handing over” [ 59 ] control was sometimes viewed as a necessary step towards recovery. However, for some, sudden loss of control contributed to heightened distress and “ amped up the ED ” [ 50 ]. For those experiencing involuntary treatment in particular (e.g., forced nasogastric feeding) this led to disconnection from one’s care. One study identified that “ hopelessness and resentment ” [ 58 ] developed. As Fox and Diab [ 49 ] outlined, the ED “ gave participants a sense of control and a method of coping …” and “ refeeding… led to an intense feeling of losing control” – supporting participants to understand the reasons behind care decisions and to process the intensive emotions these activated appeared fundamental to recovery.

Theme 2: a safe and terrifying environment

A bubble that was hard to replicate.

For some, the safety and security afforded by intensive treatment supported recovery. Inpatient and day-patient treatment granted “ permission ” [ 53 , 58 ] to focus on recovery. Inpatients was described as a “ respite from overwhelming everyday demands ” [ 56 ]. Participants felt they “ belonged somewhere ” [ 64 ], finding “ comfort in predictable routines ” [ 65 ]. Inpatients also provided relief for carers. Several studies suggested non-negotiable boundaries supported change – “ completing meals was non-negotiable ” [ 66 ]. Two studies recognised when healthcare professionals (HCPs) made alterations to rules, it gave the ED “ leverage to pathologically negotiate ” [ 65 ]. Nonetheless, one participant identified that the existence of certain rules (e.g., prohibiting of water loading) alerted them to new possibilities.

It was recognised that the certainty and boundaries inpatients afforded was “ not easily replicated ” [ 52 ]. Their loss after discharge contributed to difficulties with continuing recovery. Indeed, inpatients was called a “ bubble ” [ 58 , 59 ], “ greenhouse ” [ 60 ] and “lab… [with] very exact and measured conditions ” [ 60 ]. It left participants “ frozen… and dependent on the unit ” [ 59 ]. Various studies identified that intensive treatment (particularly inpatient treatment) put “ life on hold ” [ 61 ]. For some, this contributed to dependence on treatment and the ED. As O’Connell [ 66 ] outlined, the ED became “ the standpoint from which I related to others ”. A few studies highlighted the importance of providers “ showcasing interest and highlighting aspects of patients’ lives outside of their ED ” [ 50 ] to provide relief from institutionalisation and support motivation. As PwEDs transitioned out of intensive treatment, returning to or beginning careers, relationships, leisure and personal development activities supported “ a sense of routine and purpose ” [ 61 ].

A punitive, distressing environment

Words such as “ miserable ”, “ horrific ”, “ hostile ”, “ traumatic ”, “ distressing ”, “ inhumane ”, “ terrifying ” and “ an assault ” were used to describe treatment (in inpatient and medical settings only) [ 48 , 49 , 54 , 60 , 64 ]. For some, feeling dehumanised, restricted or traumatised negatively impacted upon motivation, engagement and subsequent recovery. Several studies suggested participants felt “ under inspection ” [ 58 ] and treatment was described as “ doing time ” [ 67 ]. “ Exposure to… [and experiences of] distressing events ” [ 54 ] were difficult – described as “ something I’ll never forget ” [ 48 ]. Participants sometimes experienced “ corrective measures as punitive or disciplinary ” [ 65 ]. Moreover, across several studies, participants felt certain boundaries were arbitrary, employed without adequate explanation, or “ rigid and unable to be maintained ” [ 58 ], leaving them feeling disempowered.

Theme 3: negotiating identity

Separating the self and the ed.

Across many studies, attachment to the ED hindered recovery. The ED afforded safety, control and confidence in its success and provided “ emotional and physical detachment ” [ 62 ]. Intensive treatment “ created a state of internal coercion ” [ 48 ]. Several studies identified that a mismatch between treatment requirements and participants’ readiness to change could result in treatment refusal or termination, strengthening attachment to the ED. For those who experienced repeated admissions, lengthy stays or passing between services, “ feelings of hopelessness ” [ 49 ] and “ feelings of failure ” [ 56 ] were prevalent. Consequently, participants “ gripped more tightly onto AN ” [ 66 ] (and the ED identity).

Indeed, being “ reduced to a number and a disorder ” [ 55 ] in inpatient and medical settings hindered recovery. Various studies suggested participants disliked feeling defined by their illness and treated as “ a collective ” [ 60 ] or in accordance with “ an assumed group identity ” [ 68 ]. This “one-size-fits-all approach ” [ 67 ] left participants feeling “ misunderstood , invalidated and stereotyped ” [ 66 ]. There was a desire for “ different tracks for people with different needs ” [ 55 ] and a wish for providers to “ humanise the patient ” [ 50 ]. Indeed, personalised, flexible treatment supported recovery across intensive settings. Day-patients was viewed as more flexible than inpatients, though both groups desired a more “tailored approach ” [ 61 ] (e.g., better consideration of differences in sexuality, gender identity and comorbidities). Intensive community treatment was considered individualised, with “ specific and obtainable goals ” [ 62 ]. Moreover, several studies highlighted that, for some participants, being supported to externalise the ED as separate to their sense of self - recognising “ AN as pathology separate to who they were ” [ 65 ] - supported change and recovery.

Beginning to want something different

Indeed, ambivalence towards treatment, particularly initially, was common. Recovery required moving from ambivalence to acceptance and/or determination. Reflecting back, one participant suggested others should “ surrender a little bit … trust in the treatment ” [ 50 ]. For some, this was difficult. Several studies identified that compliance resulted in discharge, but not necessarily recovery. One participant “ humour [ed]” [ 63 ] providers and another aimed to “ eat their way out ” [ 58 ]. It was these participants where relapse was most likely. Self-criticism, shame, worthlessness and hopelessness kept participants stuck.

Conversely, several studies outlined the value of motivation. In their study exploring experiences of recovered versus relapsed PwEDs, participants’ “ own drive ” [ 63 ] was prevalent in the recovered group. One participant described eventually “ wanting something different ” [ 66 ] and another study noted EDs require “ extremely hard work to be fought against ” [ 62 ]. Key to recovery was self-acceptance, hopefulness, and awareness and insight into the ED: “ compassion… and self-care ” [ 58 ] and “ a sense of self ” [ 64 ] were necessary.

Theme 4: supporting mind and body

Weight restoration and dietary change.

Many participants retrospectively saw intensive treatment as “ saving lives ” [ 48 ], specifically regarding medical stabilisation. However, across inpatient and medical settings, participants struggled with discrepancy between “ normal [weight restored] bodies ” and continued “ anorexic thoughts ” [ 63 ], leading to other maladaptive behaviours or relapse. Overfocus on biological markers, for example “ micro-monitoring of the participant’s weight ” [ 67 ], negatively impacted recovery. Across studies, participants wished for a “ slow pace of change with focus on all aspects of their difficulties ” [ 62 ].

Nonetheless, across specialist settings (i.e., not general medical), support in understanding and implementing dietary changes facilitated recovery. Meal support, plans and routines developed “ behavioural patterns that supported recovery ” [ 52 ] and “ staff eating alongside ” [ 46 ] normalised mealtimes. Nutritional education was also valued. Learning about “ daily nutritional requirements” [ 52 ] and “ their bodies’ need for food ” [ 47 ] helped participants make dietary changes. Similarly, opportunities to engage in practical food groups (e.g., grocery shopping, outings to restaurants/cafes and meal preparation activities) were considered important and increased “confidence to attempt repeating the challenges outside” [ 69 ]. Practicing dietary related cognitive skills and coping strategies supported a “ gradual shift to more independent eating ” [ 70 ].

Psychological awareness and understanding

Understanding what caused and maintained the ED arose as integral to recovery, through individual and group therapy and wider psychological support. Individual therapy supported PwEDs to understand the ED and “ challenge… maladaptive thinking styles and behaviours ” [ 71 ]. A “ strong [therapeutic] connection ” [ 70 ] was essential. Similarly, a range of therapeutic groups, including Cognitive Behavioural Therapy, Dialectical Behavioural Therapy and the Maudsley Anorexia Nervosa Treatment for Adults groups, as well as perfectionism, mindfulness, and value-based groups, were appreciated. Many recognised “the importance of sharing experiences and learning from each other” [ 72 ], though for a minority, the perceived intensity of groups was challenging. A holistic therapy, acupuncture, was “ relaxing , both emotionally and physically ” [ 73 ] particularly after meals. Nonetheless, for some, therapy was “ too structured ” [ 74 ]. There was desire “ for more guidance and practice to help with real life application ” [ 71 ] and several studies identified a need for longer therapeutic intervention. One study identified insufficient psychological input in ward rounds, though one participant did not want their formulation shared due to it being “ very personal ” [ 57 ].

Learning to identify, express and manage emotions emerged as beneficial across intensive settings. For example, developing strategies to “ manage… and label emotions ” [ 74 ] and communicate one’s feelings supported recovery during and after treatment. Self-examination skills (e.g., journaling) helped PwEDs “ continue to work on recovery after discharge ” [ 52 ]. Several studies identified that emotional suppression and avoidance of negative affect limited progress.

Theme 5: the need for specialist support

Genuine care, alliance and trust.

Genuine care, trust and therapeutic alliance between PwEDs and HCPs was important for recovery. Participants wished to be treated with dignity and respect. They valued HCPs who were “ approachable and friendly ” [ 51 ], empathic and non-judgemental, and who validated and managed participants’ emotions. For some, feeling cared for involved nurses adopting a “ motherly or sisterly role ” [ 65 ] and HCPs who went “ beyond their roles ” [ 54 , 75 ]. Several studies noted the importance of strong therapeutic alliances with key workers, characterised by honesty, trust and openness. This promoted “ hope and optimism ” [ 75 ] and led participants to feel “ held or supported ” [ 62 ]. Without a good keyworker relationship “ challenges could feel insurmountable ” [ 51 ].

Correspondingly, across several studies, feeling uncared for negatively impacted recovery. Participants sometimes felt dismissed, patronised or ignored. They struggled with HCPs who “ failed to follow through with promises ” [ 58 ], “ overlooked [them] in comparison to newly admitted patients ” [ 59 ], or offered a “lack of a predictable response” [ 68 ]. Distrust between PwEDs and HCPs was “ an important precursor to some difficult interactions ” [ 67 ]. Described in several studies, conflict often led to further rebellion as the participant sought to “ retain their sense of control ” [ 46 ]. Poor connections resulted in increased anxiety and distrust, which impacted participants’ self-esteem, motivation, and desire to remain in treatment.

Skilled and well Resourced Multidisciplinary Care

Several studies outlined the importance of PwEDs being care for by a skilled and well resourced multidisciplinary team, with “ staff from different disciplines… contributing to residents’ recovery ” [ 70 ]. Changing teams, HCP shortages and use of non-permanent staff decreased standards of care and hindered recovery. Whereas, well trained and skilled HCPs displayed empathy, understanding, knowledge and clear boundaries. Indeed, “ trust and belief in practitioner’s expertise were… fundamentally important ” [ 49 ]. Skilled HCPs were able to separate the person from the ED, facilitate honesty and openness, and develop strong therapeutic alliances.

Theme 6: the Value of Close others

Peer support and comparison.

Peer support and comparison affected recovery. Across intensive settings, “ physical and behavioural comparisons ” [ 59 ] and competitiveness negatively affected “group cohesion and personal recovery ” [ 53 ]. Many found it distressing and triggering being admitted alongside others at various stages of recovery and with differing levels of illness severity. Indeed, participants were susceptible to adopting “new [unhelpful] ED practices ” [ 60 ]. Participants in two studies described comparing themselves (not under section) to those under section. This comparison increased participants’ guilt for choosing to eat and negatively impacted recovery. Correspondingly, participants in one study valued spending time with people without EDs who “ value aspects of life other than shape and weight ” [ 52 ].

In contrast, many of the same studies recognised that being alongside other PwEDs also supported recovery. Peers who understood and were non-judgmental were valued and contributed to connectedness, acceptance and belonging. Peer support “ increased knowledge of effective coping skills and hope for recovery ” [ 59 ]. Several studies noted participants made “ close and lasting friendships… through a sense of camaraderie ” [ 60 ]. Relatedly, one participant valued a peer mentor who had “ been there and got through ” [ 53 ].

Carer Support and understanding

Carer support and understanding during, and upon leaving, intensive treatment supported recovery. Across settings, participants desired for carers to “ provide love , a listening ear ” [ 50 ], particularly “ during the transition period ” [ 61 ]. Carer support groups were also valued. Returning home with “ insufficient or unhelpful social support ” [ 69 ], as well as “ continual emphasis on body weight and dieting within the family or social environment ” [ 63 ], hindered recovery.

Moving from loneliness to connection

Isolation hindered recovery. Particularly upon admission, participants described an emptiness, loneliness and difficulty trusting others. Difficulties developing and maintaining relationships contributed to negative attributions of the self and others and pushed participants further into their ED. Admissions sometimes exacerbated these difficulties as participants were removed from friends and family. Fostering “ meaningful connections after treatment ” [ 52 ] and moving from “ loneliness… to interpersonal connection ” [ 62 ] supported PwEDs to move towards recovery.

This review explored what helps and hinders recovery during intensive treatment for PwEDs. Participants acknowledged that intensive treatment was often necessary, particularly with regards to biomedical recovery. As higher discharge BMI predicts more positive outcomes (for AN) [ 76 ], promoting adequate weight restoration remains a priority. Nonetheless, consistent with existing literature [ 30 , 35 ], a biomedical focus often took precedence over addressing underlying psychosocial difficulties. Participants were weight-restored but not recovered and often discharged without a period of consolidation or without adequate step-down support, placing them at higher risk of relapse following discharge [ 31 ]. Providers should be careful to not over-focus on biological markers and should ensure pace of change is acceptable to the individual.

Correspondingly, a therapeutic milieu, comprising individual and group therapy and the wider care environment, was valued and necessary for recovery, though was not always present or sufficient. Consistent with existing literature [ 77 , 78 ], psychological interventions that supported PwEDs to understand the function and maintenance of their ED, as well as to identify, express and process emotions, facilitated recovery. Externalisation also arose as an important therapeutic technique across the wider care environment to foster separation from an illness identity [ 79 , 80 ].

Ambivalence, resistance to change and hopelessness hindered recovery. Commonly identified as barriers to recovery [ 81 , 82 , 83 ], if these factors were not attended to, change was difficult, and relapse was likely. Imposing actions (e.g., through boundaries and routines) may be necessary for an individual’s safety, but carry a risk of driving them further into their ED, increasing resistance and decreasing motivation and compliance [ 84 ]. These findings support research highlighting the role of holding and actively sharing hope [ 33 , 85 ] and of motivational interviewing [ 86 ].

Consistent dietary support should be embedded into intensive treatment. Across intensive settings (except in medical settings, where they were not mentioned), structured mealtimes, meal support, modelling normal eating, meal plans, nutritional education, and food groups supported PwEDs to move towards recovery. Supporting a small body of literature [ 87 , 88 ], dietary-related interventions allowed PwEDs to practice adaptive coping strategies, improve eating behaviours and self-efficacy, and address social challenges associated with eating.

Compassionate and yet boundaried HCPs were essential. Across intensive settings, collaborative, person-centred care strengthened hope and engagement. PwEDs desired active involvement in treatment, though for some, having responsibility removed initially was a necessary part of recovery. As clinicians have highlighted, balancing PwEDs’ desires with beneficence can be challenging [ 85 , 89 ], however the dominant medical paradigm, that positions HCPs as expert authorities, may harmfully limit choice, autonomy and opportunities for treatment participation. When PwEDs feel unheard or that their needs are not being met, premature treatment termination may result [ 90 ]. Whilst those in intensive settings are often at higher risk, where possible, it remains important to offer choice and clear information. Although few in number, studies exploring day-patient and intensive community settings suggested they afforded greater choice and collaboration, though this may be as these settings generally support less severe ED populations [ 91 ].

Experiences of care were highly individual. At times, intensive environments facilitated recovery. They were safe and supportive, due to firm boundaries, clear routines, and, in inpatient settings, escape from life stressors. Yet, consistent with ED clinicians’ concerns [ 85 ], intensive treatment (especially inpatient) also contributed to treatment dependence and estrangement from life outside. Transition out of intensive treatment was highlighted as a particularly vulnerable period. Day-patient and intensive community treatment discharges were experienced as somewhat more graded and skills learnt as more transferable, perhaps leading to a greater likelihood of maintenance. These findings underscore the value of intensive treatment but also the need for a gradual discharge process. Occupational therapists may be particularly well placed to support development of necessary skills for continuing recovery, supporting PwED’s to identify purpose outside of the ED, cope with external triggers and resume educational, vocational and/or family roles [ 87 ].

Intensive environments (in inpatient and medical settings only) were also experienced as restrictive and traumatising, due to experiences of coercion, scrutiny, and being subjected to, or witnessing of, distressing practices. These iatrogenic factors may hinder recovery and have long-lasting effects, contributing to more severe psychopathology and/or trauma-related symptoms. To date, limited work has explored what aspects render the experience of psychiatric hospitalisation distressing, though experiences of coercion, stress and trauma appear common and distressing [ 92 ]. Moreover, whilst compulsory treatment can be necessary to save lives, the long-term effects are largely unknown [ 93 ].

Adding to the growing literature base surrounding the value of carer support for adults with EDs [ 94 , 95 ], carer support was valued when carers were able to understand the ED and challenges of treatment and offer empathy and validation. Given that carers’ distress and ways of coping can inadvertently maintain or reinforce the ED [ 96 ], this finding affirms the necessity for carers to receive their own support [ 95 ]. Currently, a range of carer interventions show positive outcomes for PwEDs undergoing intensive treatment, though implementation is patchy, and research has predominantly focused on young people with AN and the experiences of mothers [ 95 ].

Peer comparison, competition and contagion were common in intensive settings and often reinforced the ED-dominant identity. Nonetheless, peer support and identification were also common, and frequently decreased isolation while motivating individuals towards recovery. One study also highlighted the value of a peer mentor. As a growing area of research and clinical practice, peer mentors may instil hope and increase motivation for treatment [ 97 ]. Treatment alongside other PwEDs being both helpful and hindering for recovery is a widely reported juxtaposition [ 27 , 85 ]. Helpful peer influence appears to depend on dis-identification with the ED-dominant identity and identification with a recovery identity. Indeed, a sense of shared identity with others in ED recovery promoted recovery in an online support group [ 98 ]. Specialist support is necessary and valued by PwEDs and this generally means PwEDs are treated alongside peers. Peer influence should therefore be considered as part of each individual’s formulation, to explore the potential for support and harm and how this may relate to the ED identity.

Clinical and research implications

To enhance likelihood of ED recovery, a multidisciplinary approach is required across intensive settings. Restoring physical health remains fundamental. However, psychological support is also necessary. Whilst several psychological treatments have evidence supporting use in outpatients, minimal evidence guides implementation of evidence-based practices in intensive settings [ 99 , 100 ]. Interventions that enhance motivation to change [ 86 , 101 ], foster separation from an ED-dominant identity [ 102 , 103 ] and support emotion recognition, regulation and expression [ 104 , 105 ] should be prioritised. Research must determine what works best for whom and why, tailoring processes to PwEDs’ unique needs, contexts and goals [ 30 ] and comorbidities [ 106 ].

Specialist dietetic support should also be employed. Dieticians possess unique skills and knowledge, but the extent to which they are involved in intensive treatment is largely unknown [ 88 ] and limited research guides the content of dietetic interventions or explores the effect of including dietetics [ 107 , 108 ]. Further research should explore what constitutes effective dietetic support across intensive settings [ 87 , 108 ].

Time to consolidate recovery gains alongside planned and phased discharges are vital for ED recovery. Research has begun to explore novel ways to support intensive treatment transitions [ 109 ] and intensive stepped-care treatment programs highlight the value of longer-term multidisciplinary care for PwEDs [ 110 , 111 ]. Further research must explore how to support maintenance of recovery, particularly as PwEDs return to daily life stressors.

Clinical practice guidelines recommend carer involvement in adult ED treatment [ 112 , 113 ] and carers and PwEDs recognise the value of carer support [ 96 , 114 ]. Current carer support is inconsistent, interventions vary, and a sufficient evidence base is lacking, particularly for adult ED populations [ 94 , 115 ]. Carer capacity, skill and knowledge vary and interventions need to be tailored accordingly [ 95 , 96 ]. To develop more routine and individualised care, research needs to elucidate which carer interventions works best for whom and why, taking consideration of different carer types, EDs other than AN, and stages of illness [ 94 , 96 ].

Perhaps most notably, this review highlights the complexity of intensive support for PwEDs. Findings highlight several dilemmas that HCPs face: helpful boundaries and containment versus restriction and coercion; peer support versus contagion; and physical versus psychological recovery. There is a clear need for sufficient resource, specialist training and opportunities for HCPs to engage in reflective spaces. Organisational pressures alongside client complexity mean HCPs can find working with PwEDs emotionally draining, leading to negative judgements, frustration, hopelessness and worry [ 99 , 116 ]. Perhaps it is these feelings that lead HCPs to strive for a practice of safe-certainty (e.g., administering standardised protocols) [ 116 ]. Time and space for reflection may support adoption of positions of safe-uncertainty, and consequently more flexible, person-centred approaches based on formulation and evidence-based interventions [ 116 ].

Specialist skills and knowledge, alongside trust and openness, reduce conflict and enhance therapeutic relationships and treatment engagement [ 117 , 118 , 119 ]. Within intensive settings, HCPs must balance firmness and empathy, communicating with clear boundaries to ensure certain behaviours are minimised whilst at the same time recognising and understanding the defensive nature of the ED and its adaptive function [ 22 ]. Future studies should explore what aspects of intensive treatment may be causing harm and any long-term effects. Moreover, there is need for specialist training and research in general medical settings, given the extent of negative experiences in this area.

Strengths and limitations

This review brings together 495 participants’ perspectives across thirty studies. Extending findings of previous reviews [ 34 , 35 ], this study explores what helps and hinders recovery across the spectrum of intensive treatment specifically for adults with EDs. A rigorous methodological process was employed in the selection, evaluation and interpretation of studies. To ensure findings remained contextualised, details of each included article’s aims, sample, setting, methods and methodological quality were included. However, a number of limitations must also be considered. As grey literature was not searched, some potentially relevant studies may have been missed. However, the sample is purposive rather than exhaustive, as this review aims to offer interpretive explanation and not prediction, therefore it may not be necessary to locate every available study [ 43 ]. The majority of included studies explored inpatient treatment experiences. Whilst the number of studies exploring lived experiences in non-inpatient settings is limited, the included studies offer a glimpse into experiences of these settings and highlight an important research gap. Further research is needed into lived experiences of intensive treatment settings other than specialist inpatient treatment for PwEDs (e.g., exploring lived experiences of day-patient treatment/partial hospitalisation, residential care, intensive community treatment, home-based treatments and acute medical admissions). Moreover, many studies also inadequately described the treatment setting. Given the diversity of intensive treatment approaches for PwEDs, authors should endeavour to describe treatment settings adequately to support transferability of findings [ 120 ]. Additionally, included studies omitted several key participant characteristics, and as has been identified previously, samples lacked ethnic, gender and diagnostic diversity. This limits the generalisability of findings to groups other than white women with AN. Researchers must include ethnicity data, as its absence further maintains underrepresentation. Research prioritising the treatment experiences of marginalised groups is urgently required [ 121 ].

This review explores what helps and hinders recovery during intensive treatment for PwEDs. A sufficiently resourced and adequately trained multidisciplinary service, which includes physical, psychological, dietetic and social support, supports ED recovery. Findings emphasised the vital role psychological support and understanding can have in supporting PwEDs to move from an ED-dominant identity to a sense of self outside of the illness and the value of carers and peers who instil hope and offer empathy and validation. Nonetheless, HCPs face several challenges when supporting PwEDs in intensive settings, as what is helpful for one person may be harmful for another. A person-centred, biopsychosocial approach is necessary throughout all stages of treatment. Further research must evaluate patient and carer focused psychological interventions and the role of dietetic support during intensive treatment. It must explore the long-term effects of, at times, coercive and distressing treatment practices and determine how to mitigate against potential iatrogenic harm.

Data availability

Data is provided within the manuscript. Further data is available on request.

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There was no direct funding for this project. The first author completed the systematic review as part of a Doctorate in Clinical Psychology at the Salomons Institute for Applied Psychology whilst employed by Surrey and Borders Partnership NHS Foundation Trust. US receives salary support from the NIHR Biomedical Research Centre for Mental Health, South London and Maudsley NHS Foundation Trust and Institute of Psychiatry, Psychology and Neuroscience, King’s College London.

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HW conducted the review and analysed data, and was a major contributor in writing the manuscript; MG supervised the project, provided qualitative expertise during analysis and reviewed the manuscript; US supervised the project and reviewed the manuscript. All authors approved the final manuscript.

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Webb, H., Griffiths, M. & Schmidt, U. Experiences of intensive treatment for people with eating disorders: a systematic review and thematic synthesis. J Eat Disord 12 , 115 (2024). https://doi.org/10.1186/s40337-024-01061-5

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MIT researchers release a repository of AI risks

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Which specific risks should a person, company or government consider when using an AI system, or crafting rules to govern its use? It’s not an easy question to answer. If it’s an AI with control over critical infrastructure, there’s the obvious risk to human safety. But what about an AI designed to score exams, sort resumes or verify travel documents at immigration control? Those each carry their own, categorically different risks, albeit risks no less severe.

In crafting laws to regulate AI, like the EU AI Act or California’s SB 1047 , policymakers have struggled to come to a consensus on which risks the laws should cover. To help provide a guidepost for them, as well as for stakeholders across the AI industry and academia, MIT researchers have developed what they’re calling an AI “risk repository” — a sort of database of AI risks.

“This is an attempt to rigorously curate and analyze AI risks into a publicly accessible, comprehensive, extensible and categorized risk database that anyone can copy and use, and that will be kept up to date over time,” Peter Slattery, a researcher at MIT’s FutureTech group and lead on the AI risk repository project, told TechCrunch. “We created it now because we needed it for our project, and had realized that many others needed it, too.”

Slattery says that the AI risk repository, which includes over 700 AI risks grouped by causal factors (e.g. intentionality), domains (e.g. discrimination) and subdomains (e.g. disinformation and cyberattacks), was born out of a desire to understand the overlaps and disconnects in AI safety research. Other risk frameworks exist. But they cover only a fraction of the risks identified in the repository, Slattery says, and these omissions could have major consequences for AI development, usage and policymaking.

“People may assume there is a consensus on AI risks, but our findings suggest otherwise,” Slattery added. “We found that the average frameworks mentioned just 34% of the 23 risk subdomains we identified, and nearly a quarter covered less than 20%. No document or overview mentioned all 23 risk subdomains, and the most comprehensive covered only 70%. When the literature is this fragmented, we shouldn’t assume that we are all on the same page about these risks.”

To build the repository, the MIT researchers worked with colleagues at the University of Queensland, the nonprofit Future of Life Institute, KU Leuven and AI startup Harmony Intelligence to scour academic databases and retrieve thousands of documents relating to AI risk evaluations.

The researchers found that the third-party frameworks they canvassed mentioned certain risks more often than others. For example, over 70% of the frameworks included the privacy and security implications of AI, whereas only 44% covered misinformation. And while over 50% discussed the forms of discrimination and misrepresentation that AI could perpetuate, only 12% talked about “pollution of the information ecosystem” — i.e. the increasing volume of AI-generated spam.

“A takeaway for researchers and policymakers, and anyone working with risks, is that this database could provide a foundation to build on when doing more specific work,” Slattery said. “Before this, people like us had two choices. They could invest significant time to review the scattered literature to develop a comprehensive overview, or they could use a limited number of existing frameworks, which might miss relevant risks. Now they have a more comprehensive database, so our repository will hopefully save time and increase oversight.”

But will anyone use it? It’s true that AI regulation around the world today is at best a hodgepodge: a spectrum of different approaches disunified in their goals. Had an AI risk repository like MIT’s existed before, would it have changed anything? Could it have? That’s tough to say.

Another fair question to ask is whether simply being aligned on the risks that AI poses is enough to spur moves toward competently regulating it. Many safety evaluations for AI systems have significant limitations , and a database of risks won’t necessarily solve that problem.

The MIT researchers plan to try, though. Neil Thompson, head of the FutureTech lab, tells TechCrunch that the group plans in its next phase of research to use the repository to evaluate how well different AI risks are being addressed.

“Our repository will help us in the next step of our research, when we will be evaluating how well different risks are being addressed,” Thompson said. “We plan to use this to identify shortcomings in organizational responses. For instance, if everyone focuses on one type of risk while overlooking others of similar importance, that’s something we should notice and address.

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IMAGES

Table 1 from Evidence-based practice article reviews using CASP tools
SOLUTION: Casp Systematic Review Checklist Pdf
Critical Appraisal Tools
The CASP Tool: Literature Review
6 Literature Quality Assessment Tools in Systematic Review
Perform critical appraisal of medical literature using an app, review

COMMENTS

Optimising the value of the critical appraisal skills programme (CASP
The CASP tool is a generic tool for appraising the strengths and limitations of any qualitative research methodology. 30 The tool has ten questions that each focus on a different methodological aspect of a qualitative study (Box 1). The questions posed by the tool ask the researcher to consider whether the research methods were appropriate and ...
Critical Appraisal Tools and Reporting Guidelines
A review of critical appraisal tools show they lack rigor: Alternative tool structure is proposed. ... Breastfeeding protection, promotion, and support in humanitarian emergencies: A systematic review of literature. Journal of Human ... Optimizing the value of the critical appraisal skills programme (CASP) tool for quality appraisal in ...
CASP Checklists
Critical Appraisal Checklists. We offer a number of free downloadable checklists to help you more easily and accurately perform critical appraisal across a number of different study types. The CASP checklists are easy to understand but in case you need any further guidance on how they are structured, take a look at our guide on how to use our ...
Critical Appraisal Tools & Resources
Critical Appraisal is the process of carefully and systematically examining research to judge its trustworthiness, and its value and relevance in a particular context. It is an essential skill for evidence-based medicine because it allows people to find and use research evidence reliably and efficiently. Learn more about what critical appraisal ...
What is critical appraisal?
Critical Appraisal is the process of carefully and systematically examining research to judge its trustworthiness, and its value and relevance in a particular context. It is an essential skill for evidence-based medicine because it allows people to find and use research evidence reliably and efficiently. All of us would like to enjoy the best ...
The CASP Tool: Literature Review
The CASP tool's versatility is one of its primary advantages. Researchers and students can use CASP to critically appraise a variety of study designs, from qualitative research to systematic reviews. This adaptability is particularly valuable in interdisciplinary fields where different research methods are employed. 2.
CASP checklists
CASP checklists. CASP (Critical Appraisal Skills Programme) checklists are a series of checklists involving prompt questions to help you evaluate research studies. They are often used in Healthcare and cover the following types of research methods: Systematic Reviews, Randomised Controlled Trials, Cohort Studies, Case Control Studies, Economic ...
Optimising the value of the critical appraisal skills programme (CASP
sis.8,16,31 We chose the tool partly for these reasons; the ﬁrst author had no prior experience of formally appraising the quality of qualitative research. Further, the CASP tool was devised for use with health-related research and was therefore deemed appropriate for the context of our review. The CASP tool has been found to be a relatively
Reviewing the literature
Implementing evidence into practice requires nurses to identify, critically appraise and synthesise research. This may require a comprehensive literature review: this article aims to outline the approaches and stages required and provides a working example of a published review. Literature reviews aim to answer focused questions to: inform professionals and patients of the best available ...
Evidence-Based Practice Article Reviews Using CASP Tools ...
The Critical Appraisal Skills Program (CASP) is a widely used critical appraisal tool to review and evaluate different types of research studies [68]. This tool has adapted its guidelines to fit ...
Critical Appraisal Skills Programme (CASP) Tools
These tools teach users to critically appraise different types of evidence. The program consists of seven critical appraisal tools to assess: Systematic reviews Randomized controlled trials (RCTs) Qualitative research Economic evaluation studies Cohort studies Case-control studies Diagnostic test studies
Evidence-based practice article reviews using CASP tools: a ...
Evidence-based practice article reviews using CASP tools: a method for teaching EBP Worldviews Evid Based Nurs. 2014 Oct;11(5):344-6. doi: 10.1111/wvn.12059. Epub 2014 Aug 25. Authors Sandra Nadelson 1 , Louis S Nadelson. Affiliation 1 Utah State University ... Review Literature as Topic*
Literature reviews: Screening and appraising
The Critical Appraisal Skills Programme (CASP) at the Centre for Evidence Based Medicine (CEBM) in Oxford has produced a number of appraisal tools for use when appraising different types of study. CASP offers a set of 8 critical appraisal checklists which can be used for study types such as systematic reviews, randomised controlled trials and ...
Critical Appraisal Skills Programme criteria
CASP item Criteria used; 1. Was there a clear statement of the aims of the research? Aim can be determined from anywhere in the paper (e.g. title, abstract, introduction, methods) 2. Is a qualitative methodology appropriate?
CASP Checklists
Checklists are important and some of the reasons we believe they are important are: They help the user to undertake a complex task involving many steps. They support the user in being systematic by ensuring that all important factors or considerations are taken into account. They increase consistency in decision-making by providing a framework.
Optimising the value of the critical appraisal skills programme (CASP
The Critical Appraisal Skills Programme (CASP) tool is the most commonly used tool for quality appraisal in health-related qualitative evidence syntheses, with endorsement from the Cochrane ...
Critical Appraisal
London: CRC Press. Section 1 covers an introduction to critical appraisal. Section 3 covers appraising difference types of papers including qualitative papers and observational studies. View this eBook. Coughlan M and Cronin P (2020) Doing a literature review in nursing, health and social care. 3rd edn.
Optimising the value of the Critical Appraisal Skills Programme (CASP
This article considers issues related to the suitability and usability of the CASP tool for quality appraisal in qualitative evidence synthesis in order to support and improve future appraisal exercises framed by the tool. We reflect on our practical experience of using the tool in a systematic review and qualitative evidence synthesis.
UK Lit Reviews: Which Critical Appraisal Tool is Right?
Excerpt from the Literature Review: "In this literature review, we utilized the CASP (Critical Appraisal Skills Programme) tool to assess the quality and relevance of the selected research studies.CASP offers a flexible framework that suits a diverse range of study types, allowing us to critically appraise randomized controlled trials, qualitative research, and cohort studies, among others.
A framework for health information governance: a scoping review
We have used CASP checklists for review articles, case-control articles and qualitative research, which have 10, 12 and 10 questions, respectively. ... In most articles, the data collection tool was a literature review, an interview guide, a questionnaire, a data collection (charting) form, or a combination of these. Furthermore, there were ...
PDF CASP Checklist: 10 qu est ion ohelpy u m ake sen f Systematic Rev ew
The core CASP checklists (randomised controlled trial & systematic review) were based on JAMA 'Users' guides to the medical literature 1994 (adapted from Guyatt GH, Sackett DL, and Cook DJ), and piloted with health care practitioners. For each new checklist, a group of experts were assembled to develop and pilot the checklist and the workshop ...
What is the right way of Literature review?
I am torn between CASP and JBI critical appraisal tool. It appears JBI is more methodologically robust but technical to use (requires training), and CASP is user friendly, but less robust.
The impact of adverse childhood experiences on multimorbidity: a
This is the first systematic review and meta-analysis to synthesise the literature on ACEs and multimorbidity, showing a dose-dependent relationship across a large number of participants. It consolidates and enhances an extensive body of literature that shows an association between ACEs and individual long-term health conditions, risky health ...
Optimising the value of the critical appraisal skills programme (CASP
The tool is recommended for novice qualitative researchers, but there is little existing guidance on its application. This article considers issues related to the suitability and usability of the CASP tool for quality appraisal in qualitative evidence synthesis in order to support and improve future appraisal exercises framed by the tool.
Experiences of intensive treatment for people with eating disorders: a
Article quality was assessed using the Critical Appraisal Skill Programme (CASP) checklist and thematic synthesis was used to analyse the primary research and develop overarching analytical themes. Thirty articles met inclusion criteria and were included in this review. The methodological quality was mostly good.
CASP
This set of eight critical appraisal tools are designed to be used when reading research. CASP has appraisal checklists designed for use with Systematic Reviews, Randomised Controlled Trials, Cohort Studies, Case Control Studies, Economic Evaluations, Diagnostic Studies, Qualitative studies and Clinical Prediction Rule. View checklists & tools.
MIT researchers release a repository of AI risks
A group of researchers at MIT and elsewhere have compiled what they claim is the most thorough databases of possible risks around AI use.
PDF The Computational Auditory Signal Processing and Perception Model (CASP
21 One example of such a perceptual model is the computational model of human audi- 22 tory signal processing and perception (CASP;Jepsen and Dau,2011;Jepsen et al., 2008). 23 CASP serves as a functional model of the auditory periphery, addressing various aspects 24 of simultaneous and non-simultaneous masking. Building on the success of the modulation 25 filterbank model (Dauet al., 1997 ...

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Evidence-based practice article reviews using CASP tools: a method for teaching EBP

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Literature reviews: Screening and appraising

Top LitReview Systematic Screening

Screening and selection

Step three:

Extracting relevant information

Deciding on quality

Discussing and summarising findings

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A systematic review and metaethnography to identify how effective, cost-effective, accessible and acceptable self-management support interventions are for men with long-term conditions (SELF-MAN).

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Critical Appraisal

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Optimising the value of the Critical Appraisal Skills Programme (CASP) tool for quality appraisal in qualitative evidence synthesis

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Comparing Critical Appraisal Tools: Which One Is Right for Your Literature Review?

Understanding the Significance of Critical Appraisal

Exploring Critical Appraisal Tools

1. Critical Appraisal Tools for Literature Reviews

a. CASP (Critical Appraisal Skills Programme)

b. JBI (Joanna Briggs Institute) Critical Appraisal Checklist for Text and Opinion Papers

c. AMSTAR 2 (A Measurement Tool to Assess Systematic Reviews)

2. Critical Appraisal Tools for Systematic Reviews

a. ROBIS (Risk Of Bias In Systematic reviews)

b. PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses)

Choosing the Right Critical Appraisal Tool

1. Consider Your Research Type

2. Evaluate the Study Designs

3. Your Familiarity and Expertise

4. Research Community Preferences

Example of CASP Tool for Literature Review

In Conclusion

What you can read next

Mastering the Art of a Comprehensive Psychology Literature Review

A Comprehensive Guide: Crafting an Exemplary Dissertation Literature Review Example

Common Challenges Faced by UK Students in Writing Literature Reviews

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A framework for health information governance: a scoping review

Conclusions

Introduction

What is information governance?

Health information governance (HIG)

The necessity of HIG

HIG best practices

Methodology

Search strategy and information sources

Eligibility criteria

Study selection