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Decision aids that really promote shared decision making: the pace quickens

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• Peer review
• Thomas Agoritsas , research fellow 1 2 ,
• Anja Fog Heen , doctoral candidate 3 4 ,
• Linn Brandt , doctoral candidate 3 4 ,
• Pablo Alonso-Coello , associate researcher 1 5 ,
• Annette Kristiansen , doctoral candidate 3 4 ,
• Elie A Akl , associate professor 1 6 ,
• Ignacio Neumann , assistant professor 1 7 ,
• Kari AO Tikkinen , adjunct professor 1 8 ,
• Trudy van der Weijden , professor 9 ,
• Glyn Elwyn , professor 10 ,
• Victor M Montori , professor 11 ,
• Gordon H Guyatt , distinguished professor 1 ,
• Per Olav Vandvik , associate professor 3 4
• 1 Department of Clinical Epidemiology and Biostatistics, McMaster University, Faculty of Health Sciences, Hamilton, Ontario, Canada
• 2 Division of General Internal Medicine, Division of Clinical Epidemiology, University Hospitals of Geneva, Switzerland
• 3 Department of Medicine, Innlandet Hospital Trust, Gjøvik, Norway
• 4 Institute for Health and Society, Faculty of Medicine, University of Oslo, Oslo, Norway
• 5 Iberoamerican Cochrane Centre, Biomedical Research Institute Sant Pau—CIBER, Epidemiología y Salud Pública, Barcelona, Spain
• 6 Department of Internal Medicine, American University of Beirut, Lebanon
• 7 Department of Internal Medicine, School of Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile
• 8 Departments of Urology and Public Health, Helsinki University Central Hospital and University of Helsinki, Helsinki, Finland
• 9 Department Family Medicine, School for Public Health and Primary Care, Maastricht University, Maastricht, Netherlands
• 10 Dartmouth Center for Health Care Delivery Science, Dartmouth Institute for Health Policy and Clinical Practice, Hanover, USA
• 11 Knowledge and Evaluation Research Unit, Mayo Clinic, Rochester, USA
• Correspondence to: T Agoritsas, thomas.agoritsas{at}gmail.com

Decision aids can help shared decision making, but most have been hard to produce, onerous to update, and are not being used widely. Thomas Agoritsas and colleagues explore why and describe a new electronic model that holds promise of being more useful for clinicians and patients to use together at the point of care

Many, perhaps most, important decisions in medicine are not clear cut. 1 2 Patients and clinicians need to discuss the options using the best available evidence and make informed joint decisions that take account of patients’ context, values, and preferences. 3 4 But implementing shared decision making is not easy. Doctors need the skills and tools to do it and to build trust; patients need information and support. Patients also need to have a greater role in developing strategies to improve the process. 5 6

Access to best evidence is another key ingredient. Until now the production and dissemination of clinical practice guidelines and summaries of evidence has largely been tailored to meet the educational needs of clinicians. They are seldom provided in a format that supports shared decision making. 7 Patients meanwhile, struggle to find reliable and accessible summaries of evidence, although plain language summaries and patient versions of guidelines are being developed. 8

In this article we highlight the limitations of current decision aids and discuss how the generic production of electronic decision aids designed for use in the clinical encounter, linked directly to trustworthy summaries of evidence from systematic reviews and guidelines, may help in the long march to realising effective shared decision making.

Challenge of shared decision making

Shared decision making depends on a good conversation 9 in which clinicians share information about the benefits, harms, and burden of alternative diagnostic and therapeutic options and patients explain what matters to them and their views on the choices they face. 4 10 It should follow the principles of patient centred care, promote informed choice, and result in care that patients value. 1 3 11 Many clinicians think they practice shared decision making, but evidence suggest a perception-reality gap 3 because of misconceptions about the nature of shared decision making, the skills it requires, the time it takes, and the degree to which patients, families, and carers wish to share in decision making. 12 13 14

Each clinical encounter is influenced by many factors. These include patients’ circumstances and medical needs as well as their beliefs, stemming from what they have read, personal experience, advice from family and friends, and the media. It is therefore important to provide patients with accurate, up to date evidence on the benefits and harms of alternative management strategies and their likely effect on outcomes that matter to them, although evidence may not always reflect the complexity and multimorbidity of individual patients and patients may choose to ignore the evidence . Good shared decision making requires clinicians to have access to detailed knowledge and ideally summaries of the latest evidence and the means to share it in a way that supports thoughtful deliberation, something that cannot be done on the fly.

Limitations of traditional decision aids

For the past two decades enthusiasts have advocated decision aids to facilitate shared decision making, and over 500 have been developed. 15 16 A systematic review of 115 randomised trials showed that their use was associated with a 13% absolute increase in patients’ knowledge scores and an 82% relative increase in accurate expectations of possible benefits and harms. Effects on clinical outcomes, adherence to treatment, and use of services have not, however, been consistent. 15 17

Most decision aids have been designed for patients to use independently outside the consultation, either in the waiting room or at home. 10 Although these decision aids promote understanding of the issues, they cannot guarantee that decisions in the consultation are shared, 3 18 and there is insufficient evidence to determine how their use influences the consultation. 18 Another problem is that use of decision aids in routine care is low, 13 mainly because of poor design and lack of ready access to them. Furthermore clinicians may find the format impractical to use in consultations and may be as unfamiliar as their patients with risk estimates and the inherent uncertainty associated with probabilities. 19

Traditional decision aids are often not based on current evidence or rapidly outdated, at least in part because of limitations in funding after tool development—and may thus do more harm than good. 20 A rigorous systematic review is needed for each important outcome, and such reviews are often unavailable. A recent assessment found that although around two thirds of decision aids are based on systematic reviews or guidelines, many of these sources are of questionable quality, and only 5% of aids included an “expiry date” or a stated policy about updating. 20

Ensuring the quality and timeliness of decision aids is a daunting challenge. The work required to summarise evidence for a trustworthy decision aid is similar to that for producing a systematic review or a guideline, suggesting the potential for synergy between the worlds of evidence based practice and shared decision making. 20 21 22

Harnessing the potential of recent developments

New decision aids.

Some newer decision aids have been designed to facilitate collaborative deliberation in the course of the clinical encounter. 3 10 Montori and colleagues pioneered a user centred approach to producing decision aids through iterative observations of discussions between doctors and patients. 9 23 Their approach resulted in succinct, easy to use tools that provide graphic displays of the benefits and harms of different options organised around concerns that are important to patients ( http://shareddecisions.mayoclinic.org ). In contrast to traditional aids, which patients use independently, they are not designed to be comprehensive and do not include explicit exercises to help patients clarify their values (such as the relative values of avoiding a stroke versus a gastrointestinal bleed) 24 Instead they rely on the unique conversations that take place between patients and clinicians, with clinicians providing just in time, tailored explanations and information. 10 Direct observations in randomised trials have shown that these short tools (so far available for diabetes, statins, and antidepressants) promote dialogue and increase joint deliberation. 25 They also shift the “body language” as patients and clinicians sit together to review the data. 23 26

Other short point of care decision aids include Option Grids ( www.optiongrid.co.uk ). 27 28 These are one page summaries that provide answers to patients’ frequently asked questions, covering clinical outcomes and practical concerns faced in daily life. Their value in routine care is being evaluated. 27

Developments in appraisal and presentation of best evidence

The GRADE approach (Grading of Recommendations Assessment, Development and Evaluation) provides systematic, transparent, and explicit guidance for processing evidence from the medical literature, and has been widely adopted. 7 29 30 Use of the GRADE approach results in standardised and succinct evidence profiles or summary of findings tables, which specify the absolute effects of an intervention on outcomes important to patients rather than surrogate outcomes and provide a rating of the certainty in these estimates (high, moderate, low, or very low). 30 The recent international patient decision aids standards have emphasised the potential of GRADE for the production of decision aids 20 , and it has been adopted by over 80 organisations ( www.gradeworkinggroup.org ).

Furthermore, clinical practice guidelines using GRADE now issue weak recommendations (in contrast to strong) when there is a close balance between desirable and undesirable outcomes among alternatives, low certainty in estimates of effect, or when there is large variability in patients’ values and preferences. Weak recommendations, which dominate in recent high quality guidelines, 2 thus identify decisions where shared decision making is particularly important. 20 22

Use of new technologies

The not-for-profit MAGIC project (Making GRADE the Irresistible Choice www.magicproject.org ) has developed an online “app” with potential to produce electronic decision aids for use in the clinical encounter. 7 This MAGICapp ( www.magicapp.org ) allows authors of guidelines or systematic reviewers to write evidence summaries into a structured database and appraise them using GRADE criteria. The content can then be published on a web platform and presented in interactive formats on tablets, web portals, or electronic medical record systems. 31

In the SHARE-IT project, we use this authoring and publication platform for the generic and semi-automated production of a large number of decision aids. 7 The aids can be used with the corresponding systematic review or clinical practice guidelines and the format modified and tailored to specific contexts—for example, published in different languages or adapted to national guidelines. 32 33 The electronic format facilitates continuous updating because the data in the decision aids will change automatically each time the underlying review is modified. 7

Figure 1 ⇓ summarises the methods of the SHARE-IT project. In collaboration with DECIDE ( www.decide-collaboration.eu ), 34 we gathered an international team of experts in evidence based medicine and shared decision making, clinicians, guideline developers, and designers, and developed an initial framework and electronic prototype for the translation of GRADE summaries into decision aids. We then applied an iterative and user centred design, directly involving patients and clinicians facing real decisions. We built 10 decision aids on antithrombotic drugs and modified the generic prototype in light of observations of their use in practice and individual feedback from patients and clinicians.

Fig 1 Outline of the methods and user-centred approach in the SHARE-IT project. Objective A=to develop a framework for the generic translation of GRADE evidence summaries into decision aids; Objective B=to design a set of interactive presentation formats for use in the clinical encounter; Objective C=to test the feasibility of an automated production of these decision aids from electronically published evidence summaries. Subsequent phases of the project involve the generic production of decision aids from real practice guidelines and their evaluation in randomised trials and cohort studies

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The video illustrates how the prototype uses interactive formats to present evidence summaries at varying levels of detail. The prototype shows that the approach is feasible, and preliminary experience suggests it is appreciated by both patients and clinicians (box). Across 16 clinical encounters, patients consistently reported high levels of satisfaction with the prototype in understanding risks and benefits and in enhancing their confidence in decisions (mean scores of 88.7 and 90.9 respectively (maximum 100) as assessed by COMRADE. 35

Reaction to the decision aid

A haematologist expressed surprise that one decision aid regarding long term anticoagulation treatment for patients with unprovoked venous thromboembolism begins by inviting patients to choose which outcome to discuss first. She usually started by discussing the risk of recurrence, then bleeding before inviting patients’ questions, omitting mortality.

After we clarified she could use the tool as she wanted, she began with the six month follow-up of a 47 year old man taking rivaroxaban for an unprovoked pulmonary embolism. She explained that, although the treatment was indicated after the acute event, the decision to continue rivaroxaban depended on his preferences. She accessed the decision aid and moved to sit next to the patient. Revising her prior plan to use her accustomed order, she used the trigger sentence offered: “What aspect of your medication would you like to discuss first?” The patient chose “practical consequences.” In the conversation that followed, they further discussed risk of bleeding, recurrence, and associated mortality. The patient decided to discontinue rivaroxaban.

After the encounter, the clinician pointed out that the patient focused on practical consequences first, and she reflected on how the tool resulted in positive changes to her usual communication strategy. The patient reported that the decision aid made it easier to “digest the information and get the bigger picture.” He explained he was first interested by “day-to-day stuff” before exploring “more intimidating” but important issues.

No decision aid is sufficient to guarantee that clinical decision making is shared. Undergraduate, postgraduate, and continuing education programmes must teach health professionals about the importance of creating and fostering a culture of shared decision making and the skills needed to communicate evidence, and its limitations, in a way people can understand. Furthermore, the challenge of producing evidence summaries that deal optimally with complexity, multimorbidity, and potentially limited applicability to the patient remains. 36

We are, however, now in a position to construct, test, and refine electronic evidence summaries for use in the clinical encounter for a wide variety of patient groups and clinical settings. Our prototype, built in the MAGICapp, demonstrates the feasibility of semiautomated production of decision aids from a large number of electronically published evidence summaries. We also plan to implement these formats in another similar platform, the GRADEpro Guideline Development Tool ( www.guidelinedevelopment.org ). We invite patient organisations, research groups, guideline developers, patients, and clinicians to partner with us ( www.magicproject.org ) and help us advance the science and art of truly shared and well informed decision making.

Cite this as: BMJ 2015;350:g7624

We thank Frankie Achille (interaction designer), Rob Fracisco (designer), and Deno Vichas and Chris Degiere (programmers) for their contributions in development of the online authoring and publication platform prototype ( www.magicproject.org ). TA was financially supported by a fellowship for prospective researchers grant No P3SMP3-155290/1 from the Swiss National Science Foundation, as well as by a fellowship grant from the University Hospitals of Geneva and from Eugenio Litta—Fondation Genevoise de Bienfaisance Valeria Rossi di Montelera. PA-C is funded by a Miguel Servet research contract from the Instituto de Salud Carlos III (CP09/00137). KAOT is funded by the Academy of Finland (#276046), Jane and Aatos Erkko Foundation, and Sigrid Jusélius Foundation. The Innlandet Hospital Trust, South-Eastern Norway Regional Health Authority and Innovation Norway have provided research grants for the MAGIC program ( www.magicproject.org ). This project has received funding from the European Union’s Seventh Framework Programme for research, technological development and dissemination under grant agreement No 258583. ( www.decide-collaboration.eu )

Contributors and sources: The SHARE-IT project was conceived and is mainly funded by the MAGIC program, in close collaboration with the DECIDE project and GRADE working group, to which most contributors are affiliated. We also received numerous feedbacks from stakeholders at international meetings. TA led and coordinated the project, supervised by GHG and POV. TA, AFH, LB, and POV developed and implemented the prototype, and all contributors provided feedback at different stages. TA, AFH, and POV performed user-testing in clinical encounters. TA drafted the manuscript and all authors critically revised the manuscript. TA is guarantor.

Competing interests: All authors have read and understood BMJ policy on declaration of interests and declare the following interests: TA, AFH, LB, AK, PAC, EAA, IN, KAOT, VMM, GHG, POV are members of the GRADE working group ( www.gradeworkinggroup.org ), as well as coinvestigators in the DECIDE project ( www.decide-collaboration.eu ). TA, AFH, LB, AK, GHG, POV are members of the MAGIC research and innovation program. GE leads the Option Grid collaborative. VMM designs and tests shared decision making tools at the KER UNIT in Mayo Clinic. These tools are then made available for free with no income generated for him, his unit, or his institution.

Provenance and peer review: Not commissioned; externally peer reviewed.

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Health Systems and Population Health

School of public health.

• The Role of Patient Decision Aids: Supporting High-Quality Patient-Centered Healthcare
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Healthcare decisions are often complex, and, in many cases, the best choice depends on patient preferences and how individuals value the risks and benefits of different options. In such cases, it is recommended that patients and clinicians engage in shared decision-making, a collaborative process that considers the best available clinical evidence and the patients’ informed preferences. Patient decision aids are evidence-based tools to support shared decision-making. They include pamphlets, videos, or web-based resources that describe the decision, the options, and help people think about what features are most important to them. These evidence-based tools are specially designed to support individuals in making informed choices aligned with their values and preferences. 

Dr. Logan Trenaman, an Assistant Professor in the Department of Health Systems and Population Health, is the co-author of the Cochrane Systematic Review of patient decision aids , which was updated and released in early 2024. According to Dr. Trenaman, the updated findings re-affirm what has been known for some time:

“Compared to usual care, patient decision aids increase patients’ knowledge, their participation in decision-making, and help them make decisions that are aligned with their preferences. Further, there is no evidence of negative effects, like increased decisional regret, associated with their use.” – Dr Logan Trenaman

The Cochrane Review of Patient Decision Aids:

This Cochrane review, initiated in 2003, plays a pivotal role in summarizing the existing evidence on the impact of these tools. It is the most referenced review in the Cochrane collection (over 8400 citations). In their 2024 update, Dr. Logan Trenaman and the Cochrane team identified 104 new randomized controlled trials of patient decision aids. This brings the total number of trials in the review to 209, spanning 71 different health care decisions (and including nearly 110,000 patients – enough to fill Husky Stadium one and half times). 

Cochrane Reviews provide a comprehensive and systematic analysis of a specific healthcare topic and are conducted by the Cochrane Collaboration—an international network of researchers, healthcare professionals, patients, and policymakers. These reviews follow a rigorous methodology, and synthesize data from randomized controlled trials and other high-quality studies to provide a reliable overview of the available evidence. Cochrane Reviews can be valuable resources for healthcare professionals, policymakers, and patients, offering evidence-based insights that guide informed decision-making and contribute to advancements in medical knowledge and practice. 

Implications and Future Directions

The implications of the findings for care delivery are profound. “All health systems want to provide high-value patient-centered care. These findings emphasize that patient decision aids are evidence-based interventions that can help support this aim,” said Dr. Trenaman. The findings also highlight an important priority: ensuring that these decision aids get into the hands of patients. “With a substantial evidence base demonstrating their effectiveness, this review highlights the importance of implementing patient decision aids into routine practice,” said Dr. Trenaman.  

Washington State’s Leadership in Shared Decision-Making

Washington State has long been a global leader in supporting shared decision-making through policy. In 2007, Washington passed legislation that officially recognized shared decision making using certified high-quality patient decision aids, as a higher standard of informed consent. Washington is the only state in the U.S. that certifies patient decision aids. Since 2012, 50 patient decision aids have been certified, spanning various healthcare decisions, including maternity care, joint replacement, spine care, end-of-life care, and cancer screening. 

As healthcare professionals and policymakers seek ways to enhance patient engagement and satisfaction, the incorporation of patient decision aids into standard practice represents an evidence-based strategy. Washington State’s pioneering efforts in certifying decision aids and the robust evidence from the Cochrane review reinforce the importance of integrating these tools into routine clinical practice. As healthcare systems evolve, the focus on empowering patients with the tools and information they need to make decisions aligned with their preferences will undoubtedly contribute to improved outcomes and increased patient satisfaction. 

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Please note you do not have access to teaching notes, stressed decision makers and use of decision aids: a literature review and conceptual model.

Information Technology & People

ISSN : 0959-3845

Article publication date: 13 November 2019

Issue publication date: 9 March 2020

Decision making is inherently stressful since the decision maker must choose between potentially conflicting alternatives with unique hazards and uncertain outcomes. Whereas decision aids such as decision support systems (DSS) can be beneficial in stressful scenarios, decision makers sometimes misuse them during decision making, leading to suboptimal outcomes. The purpose of this paper is to investigate the relationship between stress, decision making and decision aid use.

Design/methodology/approach

The authors conduct an extensive multi-disciplinary review of decision making and DSS use through the lens of stress and examine how stress, as perceived by decision makers, impacts their use or misuse of DSS even when such aids can improve decision quality. Research questions examine underlying sources of stress in managerial decision making that influence decision quality, relationships between a decision maker’s perception of stress, DSS use/misuse, and decision quality, and implications for research and practice on DSS design and capabilities.

The study presents a conceptual model that provides an integrative behavioral view of the impact of a decision maker’s perceived stress on their use of a DSS and the quality of their decisions. The authors identify critical knowledge gaps and propose a research agenda to improve decision quality and use of DSS by considering a decision maker’s perceived stress.

Originality/value

This study provides a previously unexplored view of DSS use and misuse as shaped by the decision and job stress experienced by decision makers. Through the application of four theories, the review and its findings highlight key design principles that can mitigate the negative effects of stressors on DSS use.

• Decision making
• Behaviour change
• Decision support
• Work performance
• Restrictiveness
• Automation bias

Adya, M. and Phillips-Wren, G. (2020), "Stressed decision makers and use of decision aids: a literature review and conceptual model", Information Technology & People , Vol. 33 No. 2, pp. 710-754. https://doi.org/10.1108/ITP-04-2019-0194

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• Bahasa Malaysia

Patient decision aids to help people who are facing decisions about health treatment or screening

Review question

How effective/beneficial are patient decision aids for adults making decisions regarding health treatment or screening?

Key messages

- Patient decision aids are pamphlets or videos used in person or online. They clearly identify the healthcare decision to be made, provide information on options (benefits and harms), and help people clarify what is most important to them. Decision aids are designed to enhance and supplement consultation with the clinician, not replace it.

- Over 200 studies showed that patient decision aids helped adults be more involved in making health decisions by improving their knowledge and expectations of benefits and harms, and choosing an option that reflected what was most important to them.

- There were no unwanted effects for adults who used a patient decision aid.

What are patient decision aids?

Patient decision aids can help guide people making decisions when there is more than one option, including status quo (no change). They are pamphlets, videos, or web-based resources that state the decision, describe the options, and help people think about which features of the options are most important to them (which features matter most). Usual care was defined as general information, risk assessment, clinical practice guideline summaries for health consumers, placebo intervention (e.g. information on another topic), or no intervention.

What did we want to find out?

We wanted to find out if patient decision aids used by patients who are facing health treatment or screening decisions are better than the usual care for choosing an option that reflects what is most important to them. We also wanted to find out if patient decision aids were associated with any unwanted effects.

What did we do?

We updated a previous Cochrane review that was first published in 2003 and then updated in 2017. Our search included studies that compared a patient decision aid with usual care in adults who were facing health decisions for themselves or a family member. Usual care may have been general patient information or nothing. We compared and summarized the results of the studies and rated our confidence in the certainty of the evidence.

What did we find?

We found 209 studies that involved 107,698 adults. The patient decision aids focused on 71 different decisions. The common decisions were about: surgery, screening (e.g. prostate cancer, colon cancer, prenatal), genetic testing, and long-term medication treatments (e.g. insulin injections for diabetes, or statins for high cholesterol).

We are moderately confident that adults given patient decision aids were more likely to choose an option that reflected what features of the options were most important to them. Our confidence in the evidence is only moderate because the studies that provided results for our review represent only a small set of the studies evaluating patient decision aids. We are confident that when adults used patient decision aids, they had large increases in their knowledge, expectations of benefits and harms, and participation in making the decision. We are also confident that they felt better informed and were more clear about what mattered most to them. We are confident that patient decision aids did not cause any unwanted effects such as regret about the decision.

What are the limitations of the evidence?

Further research could strengthen the confidence in the evidence for choosing options that reflect which features of the options are most important to people.

How up-to-date is this evidence?

This review updates our previous review published in 2017. The evidence is up-to-date to March 2022.

Compared to usual care, across a wide variety of decisions, patient decision aids probably helped more adults reach informed values-congruent choices. They led to large increases in knowledge, accurate risk perceptions, and an active role in decision-making. Our updated review also found that patient decision aids increased patients’ feeling informed and clear about their personal values. There was no difference in decision regret between people using decision aids versus those receiving usual care. Further studies are needed to assess the impact of patient decision aids on adherence and downstream effects on cost and resource use.

Patient decision aids are interventions designed to support people making health decisions. At a minimum, patient decision aids make the decision explicit, provide evidence-based information about the options and associated benefits/harms, and help clarify personal values for features of options. This is an update of a Cochrane review that was first published in 2003 and last updated in 2017.

To assess the effects of patient decision aids in adults considering treatment or screening decisions using an integrated knowledge translation approach.

We conducted the updated search for the period of 2015 (last search date) to March 2022 in CENTRAL, MEDLINE, Embase, PsycINFO, EBSCO, and grey literature. The cumulative search covers database origins to March 2022.

We included published randomized controlled trials comparing patient decision aids to usual care. Usual care was defined as general information, risk assessment, clinical practice guideline summaries for health consumers, placebo intervention (e.g. information on another topic), or no intervention.

Two authors independently screened citations for inclusion, extracted intervention and outcome data, and assessed risk of bias using the Cochrane risk of bias tool. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made (informed values-based choice congruence) and the decision-making process, such as knowledge, accurate risk perceptions, feeling informed, clear values, participation in decision-making, and adverse events. Secondary outcomes were choice, confidence in decision-making, adherence to the chosen option, preference-linked health outcomes, and impact on the healthcare system (e.g. consultation length).

We pooled results using mean differences (MDs) and risk ratios (RRs) with 95% confidence intervals (CIs), applying a random-effects model. We conducted a subgroup analysis of 105 studies that were included in the previous review version compared to those published since that update (n = 104 studies). We used Grading of Recommendations Assessment, Development, and Evaluation (GRADE) to assess the certainty of the evidence.

This update added 104 new studies for a total of 209 studies involving 107,698 participants. The patient decision aids focused on 71 different decisions. The most common decisions were about cardiovascular treatments (n = 22 studies), cancer screening (n = 17 studies colorectal, 15 prostate, 12 breast), cancer treatments (e.g. 15 breast, 11 prostate), mental health treatments (n = 10 studies), and joint replacement surgery (n = 9 studies). When assessing risk of bias in the included studies, we rated two items as mostly unclear (selective reporting: 100 studies; blinding of participants/personnel: 161 studies), due to inadequate reporting. Of the 209 included studies, 34 had at least one item rated as high risk of bias.

There was moderate-certainty evidence that patient decision aids probably increase the congruence between informed values and care choices compared to usual care (RR 1.75, 95% CI 1.44 to 2.13; 21 studies, 9377 participants).

Regarding attributes related to the decision-making process and compared to usual care, there was high-certainty evidence that patient decision aids result in improved participants' knowledge (MD 11.90/100, 95% CI 10.60 to 13.19; 107 studies, 25,492 participants), accuracy of risk perceptions (RR 1.94, 95% CI 1.61 to 2.34; 25 studies, 7796 participants), and decreased decisional conflict related to feeling uninformed (MD -10.02, 95% CI -12.31 to -7.74; 58 studies, 12,104 participants), indecision about personal values (MD -7.86, 95% CI -9.69 to -6.02; 55 studies, 11,880 participants), and proportion of people who were passive in decision-making (clinician-controlled) (RR 0.72, 95% CI 0.59 to 0.88; 21 studies, 4348 participants).

For adverse outcomes, there was high-certainty evidence that there was no difference in decision regret between the patient decision aid and usual care groups (MD -1.23, 95% CI -3.05 to 0.59; 22 studies, 3707 participants).

Of note, there was no difference in the length of consultation when patient decision aids were used in preparation for the consultation (MD -2.97 minutes, 95% CI -7.84 to 1.90; 5 studies, 420 participants). When patient decision aids were used during the consultation with the clinician, the length of consultation was 1.5 minutes longer (MD 1.50 minutes, 95% CI 0.79 to 2.20; 8 studies, 2702 participants).

We found the same direction of effect when we compared results for patient decision aid studies reported in the previous update compared to studies conducted since 2015.

• Corpus ID: 46466266

Shared decision making and decision aids - a literature review.

• J. Thistlethwaite , R. Evans , +1 author C. Heal
• Published in Australian Family Physician 1 July 2006

34 Citations

Consideration of shared decision making in nursing: a review of clinicians’ perceptions and interventions, shared decision making between registrars and patients--web based decision aids..

• Highly Influenced

Development of a program theory for shared decision-making: a realist review protocol

Acceptance of shared decision making with reference to an electronic library of decision aids (arriba-lib) and its association to decision making in patients: an evaluation study, oncology residents’ perspectives on communication skills and shared decision making, use of visual decision aids in physician–patient communication, developing a decision aid to support informed choices for newly diagnosed patients with localized prostate cancer, arriba-lib: association of an evidence-based electronic library of decision aids with communication and decision-making in patients and primary care physicians., understanding acute care nurse practitioner communication and decision-making in healthcare teams., arriba-lib: evaluation of an electronic library of decision aids in primary care physicians, related papers.

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Cochrane Consumers and Communication

New review: decision aids for people facing health treatment or screening decisions.

Dawn Stacey and colleagues recently published their review. Read the plain language statement below or see the  full review  on the Cochrane Library.

Decision aids are interventions that support patients by making their decisions explicit, providing information about options and associated benefits/harms, and helping clarify congruence between decisions and personal values.

To assess the effects of decision aids in people facing treatment or screening decisions.

Search methods

Updated search (2012 to April 2015) in CENTRAL; MEDLINE; Embase; PsycINFO; and grey literature; includes CINAHL to September 2008.

Selection criteria

We included published randomized controlled trials comparing decision aids to usual care and/or alternative interventions. For this update, we excluded studies comparing detailed versus simple decision aids.

Data collection and analysis

Two reviewers independently screened citations for inclusion, extracted data, and assessed risk of bias. Primary outcomes, based on the International Patient Decision Aid Standards (IPDAS), were attributes related to the choice made and the decision‐making process.

Secondary outcomes were behavioural, health, and health system effects.

We pooled results using mean differences (MDs) and risk ratios (RRs), applying a random‐effects model. We conducted a subgroup analysis of studies that used the patient decision aid to prepare for the consultation and of those that used it in the consultation. We used GRADE to assess the strength of the evidence.

Main results

We included 105 studies involving 31,043 participants. This update added 18 studies and removed 28 previously included studies comparing detailed versus simple decision aids. During the 'Risk of bias' assessment, we rated two items (selective reporting and blinding of participants/personnel) as mostly unclear due to inadequate reporting. Twelve of 105 studies were at high risk of bias.

With regard to the attributes of the choice made, decision aids increased participants' knowledge (MD 13.27/100; 95% confidence interval (CI) 11.32 to 15.23; 52 studies; N = 13,316; high‐quality evidence), accuracy of risk perceptions (RR 2.10; 95% CI 1.66 to 2.66; 17 studies; N = 5096; moderate‐quality evidence), and congruency between informed values and care choices (RR 2.06; 95% CI 1.46 to 2.91; 10 studies; N = 4626; low‐quality evidence) compared to usual care.

Regarding attributes related to the decision‐making process and compared to usual care, decision aids decreased decisional conflict related to feeling uninformed (MD −9.28/100; 95% CI −12.20 to −6.36; 27 studies; N = 5707; high‐quality evidence), indecision about personal values (MD −8.81/100; 95% CI −11.99 to −5.63; 23 studies; N = 5068; high‐quality evidence), and the proportion of people who were passive in decision making (RR 0.68; 95% CI 0.55 to 0.83; 16 studies; N = 3180; moderate‐quality evidence).

Decision aids reduced the proportion of undecided participants and appeared to have a positive effect on patient‐clinician communication. Moreover, those exposed to a decision aid were either equally or more satisfied with their decision, the decision‐making process, and/or the preparation for decision making compared to usual care.

Decision aids also reduced the number of people choosing major elective invasive surgery in favour of more conservative options (RR 0.86; 95% CI 0.75 to 1.00; 18 studies; N = 3844), but this reduction reached statistical significance only after removing the study on prophylactic mastectomy for breast cancer gene carriers (RR 0.84; 95% CI 0.73 to 0.97; 17 studies; N = 3108). Compared to usual care, decision aids reduced the number of people choosing prostate‐specific antigen screening (RR 0.88; 95% CI 0.80 to 0.98; 10 studies; N = 3996) and increased those choosing to start new medications for diabetes (RR 1.65; 95% CI 1.06 to 2.56; 4 studies; N = 447). For other testing and screening choices, mostly there were no differences between decision aids and usual care.

The median effect of decision aids on length of consultation was 2.6 minutes longer (24 versus 21; 7.5% increase). The costs of the decision aid group were lower in two studies and similar to usual care in four studies. People receiving decision aids do not appear to differ from those receiving usual care in terms of anxiety, general health outcomes, and condition‐specific health outcomes. Studies did not report adverse events associated with the use of decision aids.

In subgroup analysis, we compared results for decision aids used in preparation for the consultation versus during the consultation, finding similar improvements in pooled analysis for knowledge and accurate risk perception. For other outcomes, we could not conduct formal subgroup analyses because there were too few studies in each subgroup.

Authors' conclusions

Compared to usual care across a wide variety of decision contexts, people exposed to decision aids feel more knowledgeable, better informed, and clearer about their values, and they probably have a more active role in decision making and more accurate risk perceptions. There is growing evidence that decision aids may improve values‐congruent choices. There are no adverse effects on health outcomes or satisfaction. New for this updated is evidence indicating improved knowledge and accurate risk perceptions when decision aids are used either within or in preparation for the consultation. Further research is needed on the effects on adherence with the chosen option, cost‐effectiveness, and use with lower literacy populations.

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Article Contents

Introduction, conclusions, supplementary material, acknowledgements, author contributions, data availability.

• < Previous

Patient decision aids for aortic stenosis and chronic coronary artery disease: a systematic review and meta-analysis

Conflict of interest: F.A., E.H., and D.C. received research funding in a competitive peer review process from Grow MedTech (POF000186 and POF000103) and the National Institute of Health and Care Research (NIHR204012) to develop and test a PCI PtDA called CONNECT, which is included in this review. A second author (A.B.), not involved in the development or testing of CONNECT, assessed its quality. A.-Y.C. receives honoraria and an unrestricted grant from Abbott. A.B., J.S., and H.C. have no conflicting interests.

• Article contents
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Emma Harris, Alex Benham, John Stephenson, Dwayne Conway, Aun-Yeong Chong, Helen Curtis, Felicity Astin, Patient decision aids for aortic stenosis and chronic coronary artery disease: a systematic review and meta-analysis, European Journal of Cardiovascular Nursing , Volume 23, Issue 6, August 2024, Pages 561–581, https://doi.org/10.1093/eurjcn/zvad138

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Shared decision-making is recommended for patients considering treatment options for severe aortic stenosis (AS) and chronic coronary artery disease (CAD). This review aims to systematically identify and assess patient decision aids (PtDAs) for chronic CAD and AS and evaluate the international evidence on their effectiveness for improving the quality of decision-making.

Five databases (Cochrane, CINAHL, Embase, MEDLINE, and PsycInfo), clinical trial registers, and 30 PtDA repositories/websites were searched from 2006 to March 2023. Screening, data extraction, and quality assessments were completed independently by multiple reviewers. Meta-analyses were conducted using Stata statistical software. Eleven AS and 10 CAD PtDAs were identified; seven were less than 5 years old. Over half of the PtDAs were web based and the remainder paper based. One AS and two CAD PtDAs fully/partially achieved international PtDA quality criteria. Ten studies were included in the review; four reported on the development/evaluation of AS PtDAs and six on CAD PtDAs. Most studies were conducted in the USA with White, well-educated, English-speaking participants. No studies fulfilled all quality criteria for reporting PtDA development and evaluation. Meta-analyses found that PtDAs significantly increased patient knowledge compared with ‘usual care’ (mean difference: 0.620; 95% confidence interval 0.396–0.845, P < 0.001) but did not change decisional conflict.

Patients who use PtDAs when considering treatments for AS or chronic CAD are likely to be better informed than those who do not. Existing PtDAs may not meet the needs of people with low health literacy levels as they are rarely involved in their development.

PROSPERO: CRD42021264700.

This is the first review to systematically identify and evaluate the availability, characteristics, and quality of patient decision aids for use in severe aortic stenosis and chronic coronary artery disease patient pathways.

A barrier to implementing shared decision-making for people with heart disease or aortic stenosis is the lack of high-quality, up-to-date, publicly available patient decision aids.

Existing patient decision aids are not tailored to meet the needs of people with low health literacy levels or from underserved populations.

Patient decision aids in this review improved patient knowledge, but decisional conflict scores were unchanged, possibly due to a ceiling effect.

Over the last 60 years, technological innovations have revolutionized the field of interventional cardiology. Two of the most common interventions are percutaneous coronary intervention (PCI) and transcatheter aortic valve implantation/replacement (TAVI). Over 965 000 PCIs are performed annually in the USA alone. 1 Global projections of the annual number of TAVI procedures are estimated to rise to 300 000 implants by 2025. 2 Both interventions have the potential to relieve symptoms that negatively impact quality of life 3 , 4

Patients with chronic coronary artery disease (CAD) may experience symptoms of angina. First-line treatment is medication, but if this is not effective, PCI is a treatment option to consider. 5 Patients with severe aortic stenosis (AS) also live with unpleasant symptoms associated with heart failure. Clinical guidelines indicate that a multi-disciplinary heart team should evaluate the degree of AS along with clinical and anatomical characteristics to inform their recommendations to patients about treatment options, such as TAVI or surgical aortic valve replacement (SAVR). 6

Whilst PCI and TAVI are different interventions, the decision-making processes share common features; the decision to go ahead with the treatment is considered to be ‘preference sensitive’; i.e. two or more treatment options exist but the ‘best’ treatment depends on how acceptable the patient views the potential risks and benefits of each. 7 In these situations, a process of shared decision-making (SDM) helps patients make an informed choice. 8 Accordingly, The American College of Cardiology and European Society for Cardiology recommend that SDM should take place before a patient agrees to an interventional procedure for chronic CAD or AS. 5 , 6 , 9 , 10

Shared decision-making involves a two-way discussion in which patients are informed by their doctors and nurses about what a treatment involves, the benefits and risks, and alternative options and what the outcome might be if they decided against having treatment. Importantly, SDM means that patients are encouraged to consider their unique preferences, goals, and values (i.e. what matters most to an individual about attributes of a health decision). 11 , 12 In today’s clinical practice, SDM may be difficult to achieve. Patients’ preferences and goals for treatment are not routinely discussed. 13 Moreover, patients treated with PCI often misunderstand the treatment benefits and risks and perceive their treatment as a ‘fix’. 14 , 15 Patients considering TAVI experience uncertainty about their treatment decision 16 and want to understand the risks and benefits of all potential treatment options and outcomes (e.g. TAVI, SAVR, or no intervention). 17

Patient decision aids (PtDAs) are effective interventions known to improve the quality of both the decision-making process and the choice made. 18 Evidence shows that PtDAs increase patients’ knowledge about treatments and support more accurate perceptions of associated benefits and risks. 18 However, PtDAs are not routinely used in clinical practice despite the potential benefits. 19 Some cardiologists’ do not perceive PtDAs to be of benefit to their patients. 20 Unfamiliarity and a lack of awareness of PtDAs and disagreement with the content are also factors that compromise implementation. 21

A recent meta-analysis reported that cardiology PtDAs improved two key decision outcomes: decisional conflict and patient knowledge. 22 These findings support the use of PtDAs. However, the review did not report the availability, content, and quality of the PtDAs, include PtDAs for AS, or summarize evidence on other decision-making constructs, leaving gaps in the evidence base. Accordingly, the aims of this review were to (i) identify PtDAs for chronic CAD and AS that include PCI and TAVI as treatment options and evaluate their availability, characteristics, and quality; (ii) identify and describe the quality of studies reporting on the development and evaluation of identified PtDAs; and (iii) evaluate their effectiveness on improving the quality of the decision-making process and the choice made. Findings will provide cardiology teams with an international overview of available PtDAs designed to improve the quality of SDM for chronic CAD and AS.

Review approach

Our review methods were informed by previous reviews 23 , 24 and Cochrane guidance. 25 To support the robustness of this review, the protocol was developed and registered on PROSPERO (CRD42021264700) a priori and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines 26 implemented (see Supplementary material online , Table S1 ).

Search strategy

A search of multiple databases, trial registries, PtDA repositories, and websites was conducted, to identify eligible PtDAs and published articles that described their development or evaluation. A search strategy was developed by an information technologist (H.C.), piloted on MEDLINE (Ovid), refined, and applied to five databases in all languages: CENTRAL via the Cochrane Library, CINAHL (EBSCO), Embase, Ovid MEDLINE, and APA PsycInfo (ProQuest). Four trial registers were searched: EU clinical trials register, ClinicalTrials.gov, ISRCTN Registry, and ICTRP (WHO). Searches were limited to articles published since 1 January 2006, because the consensus on criteria for judging the quality of PtDAs was published in 2006 by the International Patient Decision Aid Standards (IPDAS) Collaboration. 27 Thirty PtDA repositories/websites were also hand searched. Searches were conducted in July 2021 and updated in March 2023. See Supplementary material online , Tables S2 – S7 for search terms and the list of PtDA repositories/websites.

Patient decision aid eligibility and selection

Patient decision aids were defined as tools designed to help facilitate SDM between patients and health professionals. 18 Patient decision aids were eligible for inclusion if they fulfilled the following criteria:

Identified as a PtDA, decision tool or an aid to support SDM in their name/title, or by the developers/authors, or listed within a PtDA repository.

Designed for patients (18+ years) with chronic CAD or AS.

Included at least two treatment options, one of which must either be PCI or TAVI.

All identified PtDAs were independently screened for inclusion by two reviewers (E.H. and A.B.). The authors, or organizations listing PtDAs not publicly available, were contacted to request a copy. Eligible PtDAs that met the criteria, but were not available in full, were included in the overview ( Table 2 ) but not in the evaluation of PtDA characteristics ( Table 2 ).

Article eligibility and selection

Search results were independently screened for inclusion by at least two reviewers (E.H. and A.B./F.A.) in three phases: title, abstract, and full-text screening. Where disagreement occurred, consensus was achieved through discussion. Articles and study reports of any design were included providing they reported on the development, user-testing, acceptability, or evaluation of eligible PtDAs. Articles reporting on ineligible PtDAs, literature reviews, and editorials were excluded.

Data extraction

Data from each included study were independently extracted by two reviewers (E.H., D.C., A.Y.C., J.S., and A.B.) into a datasheet. Characteristics from included PtDAs were extracted by one reviewer and independently checked for accuracy by a second author. Any discrepancies in data extraction were resolved by consensus. Data were synthesized into tables and presented in a narrative.

Statistical analysis

Studies evaluating the effectiveness of PtDAs were assessed for suitability and those with the same primary endpoint pooled for a meta-analysis. Due to the heterogeneity of outcome measures, only two meta-analyses were conducted on the primary interval-level outcomes of patients’ Knowledge score and Decisional Conflict score. The meta-analyses were formulated as random effects using the DerSimionian and Laird model 28 to reflect clinical and methodological heterogeneity. For both outcomes, standardized mean differences, based on post-test statistics in intervention and control groups (intervention minus control), and associated 95% confidence intervals (CIs) were measured. For the Knowledge score outcome, clinical improvement was represented by increases in reported scores. For the Decisional Conflict score outcome, clinical improvement was represented by decreases in reported scores. Forest plots were conducted for meta-analyses of both primary outcomes, reporting synthesized estimates, and associated 95% CIs, and a Z -test for the standardized mean difference. Heterogeneity statistics were also reported, including Cochran’s Q test for heterogeneity, and the I 2 statistic.

Leave-one-out sensitivity analyses were conducted on the meta-analyses of both primary outcomes to assess the robustness of the derived estimates. Each of the k -included studies was omitted in turn, and a meta-analysis was conducted based on the remaining ( k − 1) studies. Any study that was suspected of excessive influence was flagged as an influential study. Funnel plots were proposed for analyses of small-study effects for meta-analyses in which the number of identified studies reached the recommended minimum 25 but were not conducted. No sub-group analyses were identified. All analysis was conducted using Stata statistical software (Version 17 I/C). 29

Quality assessment

To support the rigour of this review, three approaches were implemented to evaluate the quality of included studies and associated PtDAs. First, the quality of PtDAs was evaluated using the six qualifying and six certification criteria of the IPDAS version four checklist, 30 which are the minimum standards for tools to be defined as a PtDA and deemed as adequate for patient use. As these criteria are designed for the evaluation of ‘full’ PtDAs, we excluded brief one- to two-page consultation/conversation aids from this assessment. Second, studies reporting an evaluation of PtDAs were assessed using the ‘Standards for UNiversal reporting of patient Decision Aid Evaluations’ (SUNDAE) checklist. 31 A modified version of this checklist was used for PtDA development studies. The IPDAS and SUNDAE checklists were independently completed by two reviewers and disagreements were resolved through discussions with a third reviewer (E.H. and A.B./F.A.). To increase the consistency of the assessments, three response options were developed: yes, partially, and no (see Supplementary material online , Tables S8 and S9 ). Third, the studies included in the meta-analyses were independently assessed by two reviewers (E.H. and F.A./J.S.) for risk of bias using either the Cochrane Risk of Bias 2 tool (RoB2 32 ) or the NHLBI Quality Assessment of Controlled Intervention Studies. 33

Figure 1 shows the search results for AS and PCI PtDAs combined. In summary, 10 studies were eligible and included in the review, which, in total, reported on the development or evaluation of 11 PtDAs. A further 10 PtDAs were identified from a trial registry record and from online PtDA repositories and relevant websites. Therefore, a total of 21 PtDAs (11 AS and 10 CAD PtDAs) were included in this review. Results for the two groups of PtDAs are presented separately by condition (A.S. and C.A.D.).

Preferred Reporting Items for Systematic Reviews and Meta-Analyses 2020 flow-diagram. 26

Patient decision aids for aortic stenosis

Availability of patient decision aids for aortic stenosis.

The search identified 11 PtDAs designed for patients with AS considering TAVI (see Table 1 for an overview). Comparative treatment options included SAVR ( n = 9) or symptom management ( n = 2). Five PtDAs included the same content but were adapted for use by different age groups (MAGIC TAVI vs. SAVR PtDAs 44–48 ). Patient decision aids were developed either in the USA ( n = 5), 34 , 38 , 39 , 41 , 43 Canada ( n = 1), 36 , 37 or by an international panel of experts ( n = 5). 44–48 All were written in English and seven were available in other languages (two in Spanish and French 39 , 41 and five in Norwegian with translation of some sections available in 12 other languages 44–48 ). Over half ( n = 8) were web-based PtDAs 34 , 36 , 38 , 44–48 and the other three were paper based. 39 , 41 , 43 Five web-based PtDAs could be converted into a printable format. 44–48 Three PtDAs were less than five years old 36 , 38 , 41 but only one was publicly available, 41 which also fully or partially achieved all 12 IPDAS quality criteria (see Quality of patient decision aids for aortic stenosis).

Overview of patient decision aids

a https://sharedcardiology.org .

b European Society of Cardiology Website https://www.escardio.org/ .

c The Ottawa Hospital Research Institute Decision Aid Library Inventory https://decisionaid.ohri.ca/index.html .

d EBSCO Health care https://www.ebsco.com/health-care/products/my-health-decisions .

e Vale of York NHS https://www.valeofyorkccg.nhs.uk/rss/home/patient-decision-making/shared-decision-making/ .

Characteristics of patient decision aids for aortic stenosis

The characteristics of eight PtDAs for AS were evaluated ( Table 2 ). 39 , 41 , 43–48 The remaining three were unavailable for evaluation due to website deactivation 34 or ongoing development. 36 , 38

Characteristics of patient decision aids

EVC, explicit values clarification; HCP, healthcare professional; Tx, treatment

a Only paper version evaluated, web version unavailable.

Two types of PtDAs were identified: a PtDA booklet (eight pages) to be reviewed by the patient at home 39 , 41 and an ‘encounter PtDA’ (paper or web-based) to be used during the consultation with a health professional. 43–48 The type and presentation of information varied between PtDAs. One ‘encounter PtDA’ presented information about the risks and benefits of treatment options on a single page, 43 whereas the other ‘encounter PtDAs’ were web based and required health professionals to navigate between different sections to present the information. 44–48 All PtDAs included icon arrays to present the risks and benefits of treatment options. Patient stories were only included in the two booklet PtDAs. 39 , 41 Three PtDAs incorporated an explicit values clarification method 39 , 41 , 43 (i.e. determining what matters to patients about a given health decision by using an approach that requires interaction 12 ). The method in the two booklet PtDAs invited patients to write their hopes and concerns for the treatment options and any questions for their doctor and family. 39 , 41 The one-page ‘encounter PtDA’ invited patients to verbally respond to the question during a consultation, about what was important to them about their treatment. 43 This was the only PtDA to invite patients to indicate their preferred treatment. The readability score was not reported for any PtDA. Two PtDAs did not report their development method. 39 , 41

Quality of patient decision aids for aortic stenosis

Seven PtDAs 39 , 41 , 44–48 were included for quality appraisal using the recommended IPDAS checklist (‘encounter PtDAs’ were excluded 43 ). Results are summarized in Table 2 (full evaluation in Supplementary material online , Table S10 ). To ‘qualify’ as a PtDA, six IPDAS criteria need to be achieved; only the two booklet PtDAs fulfilled these. 39 , 41 In total, the PtDAs fulfilled between 67% and 92% (median 67%) of all 12 IPDAS criteria. Two IPDAS criteria were not achieved by all PtDAs: ‘describes the condition related to the decision’ and ‘the level of uncertainty around outcome probabilities’ (i.e. the likelihood of an adverse or positive outcome occurring following treatment).

Patient decision aids for chronic coronary artery disease

Availability of patient decision aids for coronary artery disease.

Ten PtDAs designed for patients with chronic CAD considering PCI were identified ( Table 1 ). The comparative treatment options presented were medical therapy ( n = 10), lifestyle changes ( n = 4), and coronary artery bypass graft (CABG) surgery ( n = 4). The two ‘PCI Choice’ PtDAs 58 , 61 included the same content but adapted the risks/benefits probabilities for either Class I/II or Class III stable angina. Eight PtDAs were developed in the USA 49 , 50 , 52 , 55 , 58 , 61 , 62 , 64 and two in the UK, 53 , 57 and all were only available in English. Six were web-based PtDAs 49 , 50 , 52 , 53 , 55 , 62 and four were paper based 57 , 58 , 61 , 64 (one also included a 20-min DVD 64 ). One web-based PtDA had a paper-based version 55 and two others could be converted into a printable format. 52 , 62 Four PtDAs were less than five years old 49 , 52 , 53 , 62 but only one was publicly available. 49 This PtDA 49 fulfilled only five of the 12 IPDAS criteria.

Characteristics of patient decision aids for coronary artery disease

The characteristics of seven PtDAs for chronic CAD were evaluated ( Table 2 ). 49 , 53 , 55 , 57 , 58 , 61 , 62 The remaining three were unavailable for evaluation. 50 , 52 , 64

The type of PtDA, approach, and time point of use in the patient journey varied. Two were short paper-based ‘encounter PtDAs’ (PCI Choice 58 , 61 ) to be used by the doctor with the patient in a consultation prior to diagnostic cardiac catheterization. Three web-based PtDAs 53 , 62 (one had a paper version option 55 ) could be reviewed by patients either at home or whilst in hospital before the procedure. One paper-based PtDA could be used either pre-consultation or during the consultation. 57 Details about the delivery of one web-based PtDA were absent. 49 The design of PtDAs varied from a basic table comparing treatments with the use of multi-media to explain health conditions, treatment options, and procedures. Treatment risks and benefits were presented using a wide range of approaches. All but two 49 , 57 included icon arrays to convey the likelihood of risks and benefits. One PtDA 49 omitted the major risks associated with PCI. Patient stories/scenarios were included in two PtDAs. 53 , 62 Two PtDAs included explicit value clarification methods: a rating scale 62 and completion of questions about what matters to them and their concerns. 53 Five PtDAs invited patients to indicate their preferred treatment. 53 , 55 , 58 , 61 , 62 A personalized summary of patients’ responses could be generated in two web-based PtDAs. 53 , 62 The readability level was not stated within any PtDA, although associated publications for two PtDAs reported the target reading age as eighth grade (age 13–14 years). 54 , 56 Development information was published, in varying detail, for some PtDAs, 53 , 55 , 58 , 61 two omitted this information, 49 , 57 whilst brief details about the development of clinical content were described for the remainder on the developers’ websites. 62

Quality of patient decision aids for coronary artery disease

Five PtDAs 49 , 53 , 55 , 57 , 62 were included for quality appraisal (two ‘encounter PtDAs’ were excluded 58 , 61 ; Table 2 ). Three PtDAs 53 , 55 , 62 completely fulfilled the six IPDAS ‘qualify’ criteria (see Supplementary material online , Table S10 ). In total, the five PtDAs fulfilled between 42% and 100% (median 75%) of all 12 IPDAS criteria. Two PtDAs 53 , 62 fully or partially achieved all 12 IPDAS criteria but are not currently publicly available to patients. The IPDAS criteria least fulfilled across the PtDAs were ‘providing information about the funding source’, ‘the updated policy’, and ‘the level of uncertainty around outcome probabilities’.

Overview of included studies

Table 3 provides an overview of the 10 studies included in the review (full details in Supplementary material online , Table S1 ). One study was conducted in the UK 54 and the remainder in the USA. Three reported on PtDA development and acceptability testing, 35 , 54 , 59 and seven evaluated PtDA effectiveness in either an RCT 42 , 60 or a quasi-experimental design. 20 , 40 , 51 , 56 , 63

Overview of studies

* Statistical significance ( P < 0.05)

** Sum of scores on three-item questionnaire, max score, 12; lower values indicate higher health literacy.

↔: no change; ↑: higher value/score; ↓: lower value/score.

AS, aortic stenosis; CAD, coronary artery disease; CSE, cardiac self-efficacy; DAOH, days alive and out of hospital; DCS, decisional conflict scale; DM, diabetes mellitus; GAD-7, generalized anxiety disorder-7; IPDAS, International Patient Decision Aid Standards; NS, not significant ( P > 0.05); OMT, optimal medical therapy; PCI, percutaneous coronary intervention; PtDA, patient decision aid; RCT, randomized controlled trial; SD, standard deviation; SDM, shared decision-making; SAVR, surgical aortic valve replacement; TAVR, transcatheter aortic valve replacement; UC, usual care.

Studies reporting the development/acceptability of patient decision aids

One study 35 described the development of a PtDA for AS (TAVI vs. SAVR 34 ) that is no longer available, and two studies 54 , 59 described the development and acceptability of PtDAs for chronic CAD (PCI vs. medicines only; PCI Choice 58 , 61 and CONNECT 53 ). The systematic method of PtDA development recommended by IPDAS was implemented in the two CAD PtDA studies, 54 , 59 but only the CONNECT development study 54 cited a theory underpinning the methodology (i.e. Ottawa Decision Support Framework 65 ). Patients and/or healthcare professionals were involved in either providing feedback or user testing PtDAs across all development studies. 35 , 54 , 59 Methods included semi-structured interviews, 35 cognitive interviews, 54 video and teleconference calls, 35 , 54 focus groups, 54 , 59 and observations. 59 Participant demographics were only reported in the CONNECT PtDA study, which was the only study that assessed health literacy levels with 71% of participants scoring ‘adequate’ on the Brief Health Literacy Screen. 54

Studies evaluating the effectiveness of patient decision aids

Three AS PtDAs 39 , 41 , 43 and seven PtDAs for chronic CAD 50 , 55 , 58 , 61 , 62 , 64 were evaluated across seven studies. 20 , 40 , 42 , 51 , 56 , 60 , 63 Sample size ranged from 12 to 203 participants. Most participants were White and had an advanced level of education (i.e. completed college). A variety of decision-making processes and decisional quality outcomes were assessed, including, patient satisfaction, treatment preference, patient-centred communication, involvement in SDM, decisional conflict, and knowledge level. Two 20 , 56 out of four studies that measured the SDM process (via the OPTION Scale 66 or Control Preferences Scale 67 ) showed a significant improvement after using a PtDA for AS (TAVI or symptom management/palliative care 43 ) and CAD (PCI, medical therapy, or CABG 55 ). High scores for patient satisfaction, patient-centred communication (measured using CollaboRATE 68 ), and the Preparation for Decision-making Scale 69 were reported after PtDA use for both AS and chronic CAD treatments. 20 , 40 , 42 , 63 Patients’ treatment preference, treatment delivered, or treatment concordance with patient preferences did not significantly change in any study. 42 , 51 , 56 Cardiologists in two studies felt that they already performed SDM consistently and that PtDAs were poorly understood by patients and negatively impacted on consultations. 20 , 60 Most patients preferred a DVD- or booklet-formatted PtDAs than web-based formats. 56 , 63

Quality of studies

The 26-item SUNDAE checklist was used to evaluate the quality of reporting for all included studies, with results summarized in Table 3 (full evaluation in Supplementary material online , Table S12 ). Across the studies, between 50% and 89% (median 73%) of the SUNDAE criteria were completely fulfilled. Two of the three development studies either fully, or partially, satisfied all applicable SUNDAE. 54 , 59 No evaluation study achieved all 26 criteria. One criterion (Item 18) was only fully achieved by one study, 40 because the other six evaluation studies used a bespoke patient knowledge questionnaire, which had not undergone psychometric testing. Nine SUNDAE criteria were achieved by all studies. The criteria least consistently achieved were those related to the methods and results sections (e.g. ‘description of the development process’, ‘PtDA fidelity’, ‘process evaluation’, and ‘theories/models used to guide the study design and selection of evaluation measures’).

Meta-analyses

All six evaluation studies were assessed for inclusion in meta-analyses. Usable post-test data for patient knowledge and decisional conflict scores were obtained from four studies, with a total sample of 476 participants, 20 , 42 , 56 , 60 evaluating two PtDAs for AS 39 , 41 and three for chronic CAD. 55 , 58 , 61 Variation in the PtDAs and the patient groups across the four studies necessitated the use of standardized measures in the meta-analyses. Leave-one-out sensitivity analyses revealed no individual study to be exerting excessive influence on either meta-analysis (see Supplementary material online ).

Patient knowledge

Patient knowledge of treatment options was significantly greater in the PtDA groups compared with usual care in all four studies. 20 , 42 , 56 , 60 The meta-analysis determined that the synthesized estimate of the standardized mean difference in knowledge scores (PtDA—usual care) was 0.620 (95% CI 0.396–0.845), favouring the PtDA over usual care groups. A Z -test of the standardized mean effect indicated strong evidence at the 5% significance level for a non-zero effect ( Z = 5.42; P < 0.001). Cochran’s χ 2 test for heterogeneity indicated no evidence for statistical heterogeneity ( χ 2 (3) = 4.12; P = 0.248). The I 2 statistic was 27.3%, which may indicate low levels of heterogeneity. Data are summarized in Figure 2 .

Forest plot for the meta-analysis of patient knowledge scores.

Decisional conflict

Decisional conflict (measured by the validated SURE score 70 or Decisional Conflict Scale 71 ) was not significantly different between PtDA and usual care groups in all four studies. 20 , 42 , 56 , 60 However, the ‘informed’ subscale of the Decisional Conflict Scale score was significantly lower (i.e. favourable) in the PtDA groups compared with usual care. 56 , 60 The meta-analysis determined that the synthesized estimate of the standardized mean difference in decisional conflict (PtDA—usual care) was −0.159 (95% CI −0.339 to 0.022). A Z -test of the standardized mean effect revealed no evidence for a non-zero effect ( Z = −1.717; P = 0.086). Cochran’s χ 2 test for heterogeneity indicated no evidence for statistical heterogeneity (χ 2 (3) = 0.47; P = 0.925). The I 2 statistic was 0.00%, indicating that heterogeneity might not be important. Data are summarized in Figure 3 .

Forest plot for meta-analysis of decisional conflict scores.

Risk of bias

The RoB2 tool 32 was used to evaluate potential bias in the two randomized controlled studies 42 , 60 with results indicating ‘some concerns’ ( Figure 4 ). The two non-randomized studies 20 , 56 were evaluated using the NHLBI Quality Assessment of Controlled Intervention Studies and were rated as ‘fair quality’, indicating susceptibility to ‘some bias’. 33

Risk of bias summary using the Cochrane RoB2 tool.

Patient decision aids are evidence-based tools known to be effective in improving the quality of SDM to help patients receive care that is ‘right’ for them. Patients who use PtDAs are more knowledgeable, informed, and involved, have more accurate risk perceptions, and are more confident in their treatment decision and clearer about their health goals and treatment preferences. 18 This benefits patients because those who are more active in making treatment decisions tend to have better health outcomes and are more satisfied with their care. 72 Within cardiology, many patients with AS and chronic CAD have unresolved decisional needs and require support when considering treatment with TAVI and planned PCI, respectively. 14–17 Patient decision aids offer a potential solution but cardiology teams’ lack of awareness of available high-quality PtDAs is a barrier to implementation. 21

To the best of our knowledge, this review makes a useful contribution to the research literature as the first study to systematically identify and evaluate the availability, characteristics, and quality of PtDAs used to support SDM for AS and chronic CAD. We also report on the effectiveness of TAVI PtDAs to improve decisional quality, which extends an existing meta-analysis on SDM in cardiology settings that did not include this common interventional procedure. 22 These findings, combined with our narrative summary of PtDA evaluation and development studies, provide a comprehensive international overview of AS and CAD PtDAs to inform cardiology practice.

Patient decision aid availability and quality

Our findings on the availability of PtDAs ( Table 1 ) provide a valuable reference for cardiology teams and make an important contribution to the international literature. For the first time, internationally accepted quality criteria were used to evaluate the quality of AS and CAD PtDAs. We identified 21 PtDAs, but only one AS 41 and one CAD PtDA 49 were less than 5 years old and currently publicly available for patient distribution. However, only the AS PtDA was rated as high-quality having fulfilled all quality criteria. Given that SDM is recommended in clinical guidelines and health policy, 5 , 6 , 9 , 10 this lack of publicly available high-quality AS and CAD PtDAs is a significant finding that has not previously been reported. Overall, PtDAs scored poorly on criteria that address potentially harmful bias, which is consistent with reviews of cancer PtDAs. 23 This highlights that information concerning the uncertainty of treatment options, funding sources and updated policies, requires improvement. Doctors may be reluctant to discuss uncertainties around treatment outcomes, as they believe this will be viewed as incompetence 73 and will reduce patient trust and satisfaction with care. 74 Yet, from a patient perspective, higher levels of trust in cardiologists are associated with feeling listened to and involved in decisions about their health and treatments. 75 Having an open and honest dialogue is valued by heart disease patients. 76 Increasing cardiology teams’ awareness about patients’ communication preferences and additional SDM skills may improve this important element of SDM. 77

Patient decision aid accessibility

The PtDAs identified in this review had different designs, formats, and delivery approaches. There was a lack of consensus about the optimum characteristics for AS and CAD PtDAs. Potentially, this might be because patients’ and cardiology teams’ preferences varied; a view confirmed in this review. 54 , 56 , 63 A recent meta-analysis reported that the PtDA format (e.g. paper, computer, and web based) had no impact on effectiveness for improving SDM in cardiology settings. 22 Our results corroborate this finding; patient knowledge and some aspects of the SDM process (patient perception of SDM and integration of SDM in consultations) were significantly improved in two studies despite using PtDAs with different formats 20 , 56 : a printed one-page within-consultation ‘encounter PtDA’ for AS 43 and a web-based pre-consultation PtDA for CAD. 55 This suggests that a paper-based PtDA may be as effective as a more sophisticated digital version. However, additional research is required to corroborate this finding given the paucity of studies. We suggest that paper versions of PtDAs could be made routinely available, as a minimum, to support SDM for two reasons. First, 6–7% of adults in the USA 78 and the UK 79 have never used the internet. Second, it is recognized that the introduction of digital interventions can potentially widen health inequalities. 80

The overall quality of reporting, in both AS and CAD PtDA development and evaluation studies, was good, according to the recommended SUNDAE criteria. The aims, rationale, explanation of the PtDA and study methods, and implications for practice and research were comprehensively described in most studies. However, most studies did not measure PtDA fidelity or explore potential mechanisms for their effect on decision outcomes. The demographics of patients involved in the development and/or evaluation studies were either unknown, 35 , 59 under-reported, 40 , 51 or predominantly White, English-speaking people educated to high school level or higher. 20 , 42 , 54 , 56 , 60 , 63 Furthermore, readability levels were not reported in any PtDA, although the target reading age for two CAD PtDAs was reported as 13–14 years in associated publications. 54 , 56 These findings are significant because it is unclear how relevant and accessible existing AS and CAD PtDAs are for under-represented populations, which makes it challenging for cardiology teams to evaluate their appropriateness and usefulness within their clinical setting. Since patient–healthcare professional communication has the potential to reduce or increase health disparities, 81 it is important that the development and testing of PtDAs involve patients from diverse backgrounds.

Comparisons with other meta-analyses

Our meta-analyses found significantly improved levels of patient knowledge following the use of two AS PtDAs 39 , 41 and three CAD PtDAs, 55 , 58 , 61 compared with usual care. This finding is consistent with a recent meta-analysis of cardiology PtDAs. 22 However, our meta-analysis found no significant difference in decisional conflict between PtDA and usual care groups, in contrast to other reviews. 18 , 22 There are several potential explanations for this finding. The five PtDAs 41 , 43 , 55 , 58 , 61 evaluated may have limited function in eliciting preferences. Decisional conflict may have already been low in participants at baseline and/or in usual care groups 7 , 47 , 64 , 75 or the measure may have a ceiling effect. Another explanation relates to educational attainment. A large proportion of participants across the four studies had achieved a high-school education level or higher, which is known to be associated with lower decisional conflict. 82

Although not included in our meta-analysis due to heterogeneity of study designs, outcome measures indicating the quality of the decision-making process were significantly greater following the use of PtDAs across some 20 , 40 , 42 , 56 , 63 but not all studies, 51 , 60 and no negative outcomes were reported. The inconsistent findings might be explained by differences are study designs, outcomes, measurement instruments, and the PtDAs themselves. Given the wide variety of measures used to evaluate the quality of SDM, consensus on the most appropriate is recommended.

Implementation of patient decision aids in clinical practice

None of the PtDAs were evaluated in a large-scale randomized controlled trial that appeared to be sufficiently powered with a low risk of bias, possibly due to difficulties with recruitment and/or PtDA implementation. Several factors influence the successful implementation of PtDAs; a PtDA that is too complex or competes with existing practice is unlikely to be used. 77 Involvement and commitment from senior leadership and the clinical teams are an enabler to the use of PtDAs as is the engagement of the family and significant others. 77 Successful strategies to integrate PtDAs into clinical settings include training the entire cardiology team, linking PtDA outcomes with organizational priorities, proactively encouraging patients to engage with the PtDA, and reflecting on existing pathways to identify opportunities for PtDA use and SDM conversations. 77 The latter strategy could be particularly useful for elective PCI where the timing of PtDA delivery is challenging because diagnosis and treatment often occur together in the same procedure. 83 Providing PtDAs and seeking patients’ treatment preferences and goals earlier in the severe AS pathway should be considered. 13

Strengths and limitations

We comprehensively and systematically searched multiple databases, trial registers, and 30 online sources to identify AS and CAD PtDAs and their development and evaluation studies. However, we may not have identified all eligible PtDAs and six were not available so an evaluation of their characteristics and quality was not possible. The wide range of measurement instruments used to evaluate the quality of SDM limited the number of meta-analyses conducted and made cross study comparisons challenging. Nevertheless, this review provides a high-quality international review of AS and CAD PtDAs.

A diverse range of AS and CAD PtDAs has been developed over the past 16 years, but few are up to date and currently available. To increase the transparency around PtDA quality and effectiveness, information about the uncertainty of treatment outcomes, funding sources and future updates should be added. The ‘voice’ of underserved populations and those with low health literacy levels is needed in the development or evaluation of PtDAs as to date, this has been lacking. Paper-based versions of digital PtDAs should be available to avoid widening health inequalities associated with the digital divide. We recommend that cardiology teams use the most up-to-date and highest-quality PtDAs available. We concluded that patients who use PtDAs when considering treatments for AS or chronic CAD are likely to be better informed than those who do not.

Supplementary material is available at European Journal of Cardiovascular Nursing online.

We would like to thank Professor Richard Thomson for his expert guidance and support in the development of this review. We send thanks to Ellie Price for conducting the initial search of clinical trial registers. We would also like to thank the authors who provided further details about their PtDA and research study.

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

E.H., F.A., and D.C.: conceptualization; E.H. and F.A.: methodology; E.H. and J.S.: formal analysis; E.H., F.A., A.B., D.C., A.-Y.C., and H.C.: investigation; E.H.: project administration; E.H., F.A., and J.S.: visualization; E.H., F.A., and J.S.: writing—original draft; and E.H., F.A., A.B., J.S., D.C., A.-Y.C., and H.C.: writing—review & editing.

The data underlying this review are available in the article and in its online supplementary material.

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Comparative Effectiveness of Decision Aids for Cancer-Screening Decision Making: An Overview of Reviews

• Systematic Review
• Published: 04 September 2024

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• Masaya Hibino MD 1 ,
• Chisato Hamashima MD, PhD 2 ,
• Miyuki Hirosue MS 1 ,
• Mitsunaga Iwata MD, PhD 1 &
• Teruhiko Terasawa MD, PhD   ORCID: orcid.org/0000-0002-0975-391X 1 , 3  

1 Altmetric

Decision aids (DAs), compared to no DAs, help improve the key aspects of shared decision-making, including increased knowledge, discussion frequency, and reduction in decisional conflict. However, systematic reviews have reported varied conclusions on screening uptake, and which DAs are superior to alternative forms in shared decision-making for cancer screening has not been comprehensively reviewed.

An overview of systematic reviews was performed. Multiple databases were searched up to December 31, 2023, for systematic reviews of randomized controlled trials (RCTs) and non-randomized comparative studies (NRCSs) of any size that assessed a decision aid aimed to facilitate cancer-screening decision making communications. Dual screening of abstracts and full-text reports, dual data extraction and quality assessment, and qualitative synthesis were performed.

The 22 eligible publications included 24 reviews on cancer screening DAs for a single specific cancer (8, 8, 7, and 1 on prostate, breast, colorectal, and lung cancer, respectively) and three reviews on multiple aggregate cancers. Individual reviews were based on different primary study designs (92 RCTs and 37 NRCSs); each study was infrequently cited (median citation count 2; range 1–9). Although the DAs had variable formats and delivery methods, the reviews generally focused on use and non-use comparisons. DAs decreased the intention or actual uptake for prostate and breast cancer screening, but increased it for colorectal cancer screening. DAs were associated with increased knowledge, well-informed choice, and reduced decisional conflict, regardless of cancer type. Only four reviews on comparative effectiveness between alternative formats of DAs (based on 14 RCTs and 2 NRCSs) failed to conclude on the specific format that was superior to others.

DAs improve cancer screening shared decision-making by boosting cancer screening knowledge and informed choice and lowering decisional conflict and may facilitate preference-based, individualized screening participation. Comparative data on different cancer screening DAs are limited.

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The effects of shared decision-making compared to usual care for prostate cancer screening decisions: a systematic review and meta-analysis

Wilfully out of sight a literature review on the effectiveness of cancer-related decision aids and implementation strategies.

Shared medical decision in prostate cancer screening in primary care: a systematic literature review of current evidence

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

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Acknowledgements

The English language editing was provided by Editage ( http://www.editage.com ). This assistance was funded by the Sciences Research Grants for Promotion of Cancer Control Programs by the Ministry of Health, Labor and Welfare, Japan (grant number 20EA1024).

This research was supported by the Sciences Research Grants for Promotion of Cancer Control Programs by the Ministry of Health, Labor and Welfare, Japan (grant number 20EA1024).

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Department of Emergency Medicine and General Internal Medicine, Fujita Health University School of Medicine, Toyoake, Aichi, Japan

Masaya Hibino MD, Miyuki Hirosue MS, Mitsunaga Iwata MD, PhD & Teruhiko Terasawa MD, PhD

Health Policy Section, Division of Nursing, Faculty of Medical Technology, Teikyo University, Tokyo, Japan

Chisato Hamashima MD, PhD

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Teruhiko Terasawa MD, PhD

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Contributions

All the authors cited in the manuscript made substantial contributions to the concept and design, the execution of the work, or the analysis and interpretation of data; and to drafting or revising the manuscript; and have read and approved the final version of the paper. All authors had access to the data. Masaya Hibino and Teruhiko Terasawa verified the dataset. All authors were responsible for making the decision to submit this manuscript.

Masaya Hibino: conceptualization, data curation, formal analysis, investigation, validation, and writing — review and editing.

Chisato Hamashima: conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, project administration, resources, supervision, validation, and writing — review and editing.

Miyuki Hirosue: conceptualization, data curation, formal analysis, investigation, and writing — review and editing.

Mitsunaga Iwata: conceptualization, formal analysis, supervision, and writing — review and editing.

Teruhiko Terasawa: conceptualization, data curation, formal analysis, investigation, methodology, project administration, resources, software, supervision, validation, visualization, writing — original draft, and writing — review and editing.

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Correspondence to Teruhiko Terasawa MD, PhD .

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Hibino, M., Hamashima, C., Hirosue, M. et al. Comparative Effectiveness of Decision Aids for Cancer-Screening Decision Making: An Overview of Reviews. J GEN INTERN MED (2024). https://doi.org/10.1007/s11606-024-09001-4

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DOI : https://doi.org/10.1007/s11606-024-09001-4

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End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

Affiliations.

• 1 School of Nursing, The University of Texas at Austin, Austin, TX, USA.
• 2 School of Information, The University of Texas at Austin, Austin, TX, USA.
• PMID: 29844911
• PMCID: PMC5966844
• DOI: 10.1177/2050312118777517

Objectives: To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.

Methods: A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.

Results: The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers' preferences for different types and amounts of information necessary to make decisions consistent with patients' values.

Conclusion: Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers' decision making. More diverse samples are needed.

Keywords: Alzheimer’s; Dementia; decision aids; end-of-life; family caregivers.

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Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

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Critical factors driving construction project performance in integrated 5d building information modeling.

1. Introduction

2. materials and methods, 2.1. procedure for the systematic literature review, 2.2. search strategy, 2.3. tools and software, 2.4. data resources, 2.5. prisma flow for systematic review, 2.6. network analysis, 3.1. development trends for 5d bim in the construction industry, 3.1.1. publications per year, 3.1.2. major countries or regions undertaking research, 3.1.3. key productive authors, 3.1.4. keyword co-occurrence and cluster identification, 3.2. factors significantly affecting the adoption of 5d bim, 3.3. key project performance factors affected by the implementation of 5d bim, 4. discussion, 4.1. evolution of 5d bim in the construction industry, 4.1.1. citation bursts and trend evaluation, 4.1.2. cluster analysis, 4.2. critical factors influencing the implementation of 5d bim, 4.2.1. technology factors, 4.2.2. organizational factors, 4.2.3. environmental factors, 4.2.4. operator factors, 4.2.5. project factors, 4.2.6. government policy, 4.3. key performance indicators affected by the implementation of 5d bim, 4.3.1. project cost performance, 4.3.2. project time performance, 4.3.3. project quality performance, 5. limitations and future research directions, 6. conclusions, author contributions, data availability statement, conflicts of interest.

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Share and Cite

Sun, H.; Khoo, T.J.; Esa, M.; Mahdiyar, A.; Li, J. Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling. Buildings 2024 , 14 , 2807. https://doi.org/10.3390/buildings14092807

Sun H, Khoo TJ, Esa M, Mahdiyar A, Li J. Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling. Buildings . 2024; 14(9):2807. https://doi.org/10.3390/buildings14092807

Sun, Hui, Terh Jing Khoo, Muneera Esa, Amir Mahdiyar, and Jiguang Li. 2024. "Critical Factors Driving Construction Project Performance in Integrated 5D Building Information Modeling" Buildings 14, no. 9: 2807. https://doi.org/10.3390/buildings14092807

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End-of-life decision making by family caregivers of persons with advanced dementia: A literature review of decision aids

1 School of Nursing, The University of Texas at Austin, Austin, TX, USA

2 School of Information, The University of Texas at Austin, Austin, TX, USA

Amy S Berkley

Kenneth r fleischmann, jane dimmitt champion, kolina s koltai, objectives:.

To investigate existing knowledge in the literature about end-of-life decision making by family caregivers of persons with dementia, focusing on decision aids for caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research.

A literature review through systematic searches in PubMed, CINAHL Plus with Full Text, and PsycINFO was conducted in February 2018; publications with full text in English and published in the past 10 years were selected in multiple steps.

The final sample included five decision aids with predominantly Caucasian participants; three of them had control groups, and three used audiovisual technology in presenting the intervention materials. No other technology was used in any intervention. Existing interventions lacked tailoring of information to caregivers’ preferences for different types and amounts of information necessary to make decisions consistent with patients’ values.

Conclusion:

Research is needed in exploring the use of technology in decision aids that could provide tailored information to facilitate caregivers’ decision making. More diverse samples are needed.

Introduction

Dementia, a collection of symptoms involving cognitive impairment severe enough to interfere with daily living, is a major public health issue worldwide. In the United States, as the number and proportion of older adults increase, the number of persons living with dementia is projected to increase from 5.4 million in 2016 to 13.8 million in 2050, with the greatest growth among those in advanced stage. 1 Dementia is the sixth leading cause of death in the United States, the only one for which there is currently no treatment or cure. 1

The very nature of dementia requires heavy family involvement, which can be stressful and challenging. 2 Negative consequences for caregivers’ own health and well-being have been well documented. 3 , 4 Even after placing a person with dementia in a care facility (e.g. nursing homes), the caregiver continues to be involved, supervising the care of the person with dementia at the facility and serving as a surrogate decision maker for important legal, financial, and healthcare decisions. 5 The ethical and emotional responsibilities of caregivers are great, especially when decisions involve end-of-life (EOL) care. Such decisions are often high-stake, value-laden, and complex (e.g. withdrawing artificial nutrition/hydration or antibiotics, or enrolling in hospice). 6 – 9

In response to the growing number of persons with dementia at EOL and the complexity of decision-making responsibilities of caregivers, researchers have begun to develop and test interventions that can support family caregivers’ decision making for persons with dementia. This is done primarily through the use of decision aids, which are structured tools designed to help patients and their families make specific, informed healthcare choices consistent with patients’ values. 10 Decision aids typically contain pertinent educational information about a patient’s condition or disease and about the advantages and disadvantages of treatment options; assessment tools that help individuals clarify their values by asking users to rate their perceptions of the benefits and disadvantages of different treatment or options; and advice about the decision-making process. 9 Formats of decision aids vary from video to print information to help decision makers consider how risk, uncertainty, and values may affect clinical and care choices. 7 Developed as an adjunct to, not in lieu of, consultation and counseling from healthcare providers, decision aids have been shown to improve knowledge, engagement in shared decision making, satisfaction with decisions, and compliance with treatment plans. 11 Decision aids are typically designed to be brief and simple to administer, thus addressing a major barrier to providers’ engagement with patients and their families in shared decision making—that is, time constraints.

To our knowledge, no literature review exists to systematically compare and summarize the characteristics of existing decision aids for caregivers of persons with advanced dementia. To address this gap in the literature, this literature review aims to systematically investigate existing knowledge in the literature about EOL decision making in family caregivers of persons with dementia, focusing on the types of decision aids available for family caregivers of persons with advanced dementia, and to identify gaps in the literature that can guide future research (e.g. we intend to develop and test a mobile technology–based decision aid for caregivers). Our overarching research question (RQ) was. “What were the main characteristics of existing decision aids for family caregivers of persons with advanced dementia?” Under this overarching RQ, we had two specific RQs: How might existing decision aids have involved tailoring, specifically based on patients’ values and their caregivers’ information preferences? (RQa) And what types of technology were used in existing decision aids for family caregivers of persons with advanced dementia to obtain desired information (RQb)?

Article selection

Following strategies used in earlier literature review studies, 12 – 14 we performed three rounds of systematic selection in the PubMed database: (a) keyword search in Titles/Abstracts and MeSH terms, (b) screening of titles and abstracts, and (c) screening of full-text articles. The searches were performed on 5 February 2018.

Round 1: keyword search

We used the following four sets of keywords to search the Title/Abstract field in PubMed: (“dementia” OR “Alzheimer’s”) AND (“decision aid*”) AND (“caregiver*” OR “proxy” OR “proxies” OR “surrogate*”) AND (“end of life” OR “advanced dementia”). We used the following PubMed filters: (1) Text availability: Full text, (2) Publication dates: 10 years, and (3) Species: Humans. This process produced a total of seven articles. Next, we searched in MeSH terms in PubMed, using the same search terms mentioned above (except for “surrogate*,” which was not a MeSH term) and with the same three built-in filters (full text available, published in the past 10 years, and humans). A total of three results were found. Combining the results from these two searches yielded a total of 10 non-duplicate results.

In addition to PubMed, we also searched in two other databases on the same day: CINAHL Plus with Full Text and PsycINFO. We used the same four sets of keywords that we used for PubMed to search in the Abstract field of these two additional databases. We also added the following built-in filters (“Limiters”) when searching in these two additional databases: Full Text, References Available, English Language, Peer Reviewed, Research Article, Human, and Journal Article. Our searches found no additional results than we had already found in PubMed. Thus, the 10 results found during this round were used in the subsequent rounds of screening.

Round 2: screening the titles and abstracts

Author B.X. manually screened the titles and abstracts of the 10 articles to ensure they covered all four key aspects that guided our first round of searches, with the following further criteria predetermined by authors B.X., J.K., and K.R.F.:

• Articles reporting original data were included; those that did not report original data were excluded.
• Articles in which family caregivers of dementia patients constituted at least part of the study sample were included. For example, a study that included both healthcare providers and family caregivers was included, whereas a study that had only healthcare providers in the study sample without any family caregivers was excluded.

After these criteria were applied, five articles remained. The full text of the remaining five articles was examined and confirmed that they all met the criteria. This final sample comprised empirical studies published over the last 10 years that focused on decision aids for the EOL decision making of family caregivers of persons with advanced dementia. The selection process is illustrated in Figure 1 .

Systematic selection process.

Round 3: coding the full-text articles

We reviewed the full text of the final five articles and coded them by two independent coders (B.X. and A.S.B.) using a coding sheet predetermined by authors B.X., J.K., and K.R.F. based on prior work. 12 – 14 Discrepancies between the two independent coders’ coding were minimal. After all five articles were coded, key information from each article was summarized.

Key characteristics of the studies in our final sample are summarized in Table 1 .

Summary of the studies in the final sample.

EOL: end-of-life.

The studies’ samples varied widely, from 36 to 512. All interventions consisted of predominately Caucasian participants. Two of the interventions in our final sample did not have control groups; 7 , 17 the others did. 2 , 15 , 16 All interventions used audiovisual technology—intervention materials delivered in an audio/video format in addition to a conventional print format. No other technology was used in any of the interventions. The interventions focused on factors affecting typical EOL decision-making processes and outcomes (especially feeding-related), that is, knowledge about feeding options, communication skills, decisional conflicts, and decisions about treatment.

The interventions all involved delivering educational materials to family caregivers, although differences existed in how those materials were delivered. Some of the interventions featured providing participants with the same generic materials to review on their own with no other intervention elements. 2 , 15 , 17 Other interventions 7 , 16 involved participants reviewing the materials individually, followed by a structured care plan meeting with the staff, with the latter presumably enabling opportunities to provide information tailored to caregivers’ unique circumstances. Notably though, none of the interventions specifically acknowledged the need for tailoring of information to the needs of caregivers or patients in different situations.

The studies in this review involved several different instruments to measure a range of concepts, most commonly knowledge, communication skills, decisional conflict, comfort with knowledge, confidence with treatment, and satisfaction with care. Many of these instruments were developed specifically for these interventions and require further psychometric testing in different populations and contexts. The studies that focused on the efficacy of their interventions 2 , 17 reported their interventions were effective in at least one of their outcome measures, that is, improved knowledge, quality of communication, or decreased decisional conflict. One intervention found statistically significant difference in tube feeding between the intervention and control groups. 2

It should be noted that the reviewed articles provided insufficient information about the interventions, making it difficult to extract interventions’ details and make comparisons across the studies. The description of an intervention could be as simple as one sentence, for example: 17 “Intervention: For intervention surrogates only, an audiovisual-print decision aid provided information on dementia, feeding problems in dementia, advantages and disadvantages of feeding tubes or assisted oral feeding options, and the role of surrogates in making these decisions” (p. 114).

The small number of interventions in our final sample suggests that decision aids supporting EOL decision making by caregivers of persons with dementia is currently understudied and in need of extensive research. Our ability to make comparisons between studies was limited because of the differing methods employed and different types of decision aids examined. An added challenge is that insufficient information was provided in the publications with regard to various specifics about the decision aids. Future studies should report details of the interventions such as the amount of information provided (e.g., number of pages of print materials, minutes of audio/video provided, approximate time required to review the information) and the intervention’s delivery mode (e.g. group size or individual information review, presence or absence of tailored in-person guidance).

Feeding tube-related issues faced by caregivers of people with advanced dementia were the primary focus of decision aids identified in this review of empirical studies. 5 , 7 As the condition of the person with dementia deteriorates, decisions involve more emotionally laden issues such as advance care planning or resuscitation orders. 6 , 18 Such decisions are difficult, because they require the caregiver to exercise substituted judgment or follow best interest standards to make decisions on behalf of the person with dementia; yet, it is often difficult to know what the wishes of a person with dementia are or what the best course of treatments are, given the uncertain, protracted nature of dementia’s progression. 6 , 18 , 19

A lack of focus on tailoring to caregivers’ information preferences necessary to ensure decision making consistent with patients’ values

The interventional studies in our sample generally concluded that their decision aids helped caregivers with their decision making. However, a major limitation of existing decision aids is that they typically do not take into account caregivers’ preferences for different types and amounts of information that are necessary to ensure decision making consistent with patients’ values. The decision aids in these studies were typically limited by a one-directional approach: the types and amounts of information provided were predetermined by researchers/providers, instead of tailored to the information preferences of individual caregivers. Subsequently, caregivers might not receive the right types and/or amounts of information necessary for making decisions consistent with patients’ values. This lack of focus on values and preferences may reflect an assumption in the current medical model that patients have well-formed EOL care preferences consistent with their values and that caregivers can ascertain what those preferences are, or that caregivers are fully informed of how different care decisions may, or may not, support their loved ones’ values and EOL preferences. However, such an assumption frequently fails to reflect reality. Patients and their spouses can differ significantly in EOL care preferences, with patients more likely to prefer additional treatment than their spouses. 20 This is consistent with findings from earlier research showing low to modest congruence between patients and caregivers. 21 When potential caregivers were asked in scenarios to predict patients’ preferences, accuracy was highest when patients’ current health status was considered and lowest in scenarios of stroke and dementia; caregivers reported that EOL discussions failed to occur for a number of reasons, but mostly because of family belief structures and personalities. 22

In a study that compared hypothetical EOL decision-making vignettes between relatives and professionals acting as patient surrogates, researchers found that situational variables such as the patient’s current behavior and the views of healthcare professionals and family members had higher impacts on decisions than did the patient’s prior statements or life attitudes. 8 Other researchers who have looked at EOL decision-making scenarios with healthy older adults have found other factors that influence caregivers’ decision making, such as caregivers’ own current state of health, health literacy, and communication with healthcare providers. 8 , 22 – 24 Even when patients’ care preferences are known to caregivers, they might still not be implemented, due to factors such as attempting to achieve family consensus. 25 Evidence from 228 community-dwelling family care dyads showed that 25% of cargivers underestimated the importance of everyday care values of persons with dementia, suggesting incongruence between patients’ and caregivers’ values. 26 If and how these factors affect caregiver decision making deserves further examination and implementation in decision aids.

Underutilization of technology

Despite advances in information and communication technology, none of the decision aids in our sample involved any kind of technology beyond audio/video as a part of an intervention. Existing decision aids are typically delivered to caregivers in print (typically a hardcopy workbook), sometimes coupled with in-person discussions with trained providers in a group or individually. The printed materials’ content varied; topics included information about advanced dementia, the role of the surrogate decision maker, EOL care options and their pros and cons, common community services available, and pointers toward further information. Presented in a static print or audio/video format, such rich information can be overwhelming, and some of it may even be irrelevant to individuals with unique values, preferences, or other circumstances. Tailoring interventions to meet the needs of particular groups is critical, and such interactive information can best be delivered using more advanced technology such as a website or mobile app that would allow for interactive use beyond the scope of a particular class discussion setting. Doing so is important because caregivers are likely to think of additional questions while engaging in the everyday process of caring for persons with dementia. Unfortunately, none of the studies reviewed employed such advanced technology in their interventions.

For technology to be useful in decision aids for caregivers of persons with dementia, an important point to note is that caregivers (e.g. spouses of persons with dementia) may be of older ages themselves and/or facing other challenges (e.g. limited literacy). As such, it is critical that any technology used in a decision aid is easy to use for caregivers with limited technology experience and skills. Age-appropriate training and technical support will be necessary as well. Furthermore, integrating technology in decision aids is not to completely replace human interactions, as interactions with healthcare professionals can be instrumental to the caregiver’s decision-making process and outcomes.

The importance of advance care planning

A major topic commonly addressed in the literature was advance care planning for persons with dementia. Caregivers in various sample populations had taken on this responsibility with little or no knowledge of the values and desires of their relatives regarding EOL care and management. Decision aids have been designed to encourage caregivers to prepare advance directives and/or discuss possible treatment limitations with healthcare providers. Advance care plans are themselves a type of decision aid because they educate and prepare caregivers for the progression that they can expect as their relatives decline toward the end of life. 6 , 7 In an ideal situation, the demands of an advance directive or any kind of advance care planning would be discussed with the family member while the person is still able to express his or her wishes about EOL care. Decisional conflict was greater with caregivers who were struggling to make sense of their relatives’ wishes, and the literature showed that decision aids did help in these situations. 5 – 7

An important aspect of advance care planning that requires greater acceptance is the use of do not hospitalize (DNH) orders: 27 barriers to these orders included a “perceived lack of physician involvement in decision-making and limited understanding of DNH orders and the resident’s prognosis” (p. 1568). Meanwhile, evidence also exists that advance directives (specifically, euthanasia directives in the Netherlands) were hardly ever actually adhered to by physicians and family members after they had been completed, 18 although such a phenomenon may have limited generalizability given its specific context.

The controversies around tube feeding and use of antibiotics

Feeding is one of the most contentious areas of decision making for persons with dementia. Decision aids typically included content designed to help caregivers understand the issues surrounding feeding, percutaneous endoscopic gastronomy tube insertion, and alternative treatments. Controlled observational studies show that tube feeding does not improve survival, aspiration, or wound healing; however, this information is not routinely shared with decision makers, and families and professionals alike may have unrealistically high expectations for benefits from tube feeding. 2 The decision aids in this literature review frequently involved improving caregiver knowledge about problems with tube feeding, separating the desire to support and “nourish” the person with dementia from the physical need to feed someone mechanically who has a limited life expectancy. 2 , 5 , 7 However, the decision aids did not assess caregivers’ preferences for different types and amounts of information beforehand and presented little opportunity to include them in the decision-making process.

Related to tube feeding is the question of treatment for infections. Treatment with antibiotics frequently brings its own set of complications, including gastrointestinal upset and other side effects. Also, transferring a person with dementia can worsen disorientation because it places the person in an unfamiliar environment. In a study that examined caregivers’ involvement in decisions about whether or not to treat minor infections in persons with dementia and how aggressively to do so, the researchers found that caregivers participated only about half of the time. 5 Studies of family members’ perceptions of the EOL decision-making process and outcomes suggest important opportunities for the improvement of decision making in EOL care. 28

The need for research on diverse populations

Using racially/ethnically homogeneous samples—that consisted of predominately Caucasian participants—was a major limitation in studies in this review. Decision making is culturally sensitive, and more diverse samples would enhance our knowledge in this area. In addition, ethnically and racially diverse samples may well point out a need for more flexible, customizable decision aids. For instance, prior evidence suggests that African Americans were less likely than Caucasian Americans to have advance care plans, and implementing programs in the community was effective in enhancing success because participants felt comfortable discussing sensitive topics in environments they could trust. 6 A study of Hong Kong Chinese family caregivers found that reliance on collective family decisions significantly affected choices of caregivers and that filial piety and possible confrontation from relatives, combined with a lack of knowledge about life-sustaining treatments, worsened decision-making stresses. 29 Compared with Caucasian elders and their caregivers, non-Caucasians and individuals with greater financial difficulty had stronger preferences for life-prolonging treatment. 23

People from ethnic minority groups may prefer different EOL treatments and are, due to disparities and differences in values and beliefs, less likely to have advance directives (e.g. members of specific ethnic groups may have strong cultural taboos against open and direct discussion about death and dying 30 , 31 ). The experiences of ethnic minority caregivers differ as well (e.g. higher levels of depression and stress among Hispanic caregivers than among non-Hispanic Caucasians 32 ). Caregivers and patients in rural areas also face unique challenges: they tend to be older, in worse health, with greater financial burden and limited access to providers and support services, experiencing stigma of dementia and a lack of privacy. 33 – 38 The coping styles of caregivers of persons with dementia in rural areas are often different from those in urban areas, suggesting unique needs. 38 The significant health disparities and characteristics among caregivers who are members of racial/ethnic minority groups and/or live in rural areas call for effective interventions tailored to their unique needs and circumstances.

Limitations of this literature review

This literature review has limitations. We searched in only three databases with specific inclusion/exclusion criteria. While these criteria were necessary for our specific purposes (i.e. preparing for a larger intervention study involving using interactive technology to provide tailored decision aids for caregivers of persons with advanced dementia), using these criteria led to only five relevant articles in our final sample. One possible reason is that we used search terms common to the US context, which might not necessarily be common terms used in other national contexts. Subsequently, our study is geared more toward the US context. Also, our searches focused on decision aids, for the purpose of comparing and analyzing what has been done and what has not with existing decision aid interventions. It was beyond the scope of this current literature review to examine the literature on broader issues related to decision making.

This literature review has identified several issues that call for attention. Few decision aids exist for caregivers’ EOL decision making for persons with dementia. Existing studies lacked a focus on caregivers’ preferences for different types and amounts of information necessary to ensure decision making consistent with patients’ values. Advance care planning for persons with dementia is a major challenge for caregivers. Ideally, the demands of an advance directive or any kind of advance care planning would have been discussed with the person with dementia while he or she was still able to express such wishes. Yet, this is often not the case. Developers of decision aids should strive to find ways to incorporate values and preferences in decision making. None of the studies mentioned any tailoring or acknowledged the need for specific tailoring of information to the individual situations of patients or caregivers. Important variables for tailoring such as values and information preferences were typically not assessed before or during the implementation of decision aids. While recent technological developments enable great tailoring of information, existing decision aids have largely underutilized such tailoring potential. Future research should investigate whether/how we could take full advantage of recent technological developments in the design and implementation of future decision aids (that are easy to use by caregivers with limited technology literacy). Finally, existing studies involved samples predominantly of non-Hispanic Caucasians. Since EOL decision making is culturally sensitive, future research should place special emphasis on ethnically and racially diverse samples and develop tailored and interactive decision aids for underrepresented groups.

Acknowledgments

This work was part of a Pilot Research Grant from the Population Health Initiative at the University of Texas at Austin, entitled Values and Preferences in Dementia Family Caregivers’ End-of-Life Decision-Making ; Principal Investigator (PI): Bo Xie; Co-PIs: Ken Fleischmann and Jung Kwak.

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was part of a Pilot Research Grant from the Population Health Initiative at the University of Texas at Austin, entitled Values and Preferences in Dementia Family Caregivers’ End-of-Life Decision-Making ; Principal Investigator (PI): Bo Xie; Co-PIs: Ken Fleischmann and Jung Kwak.