scholarly journals Systematic Development of Patient Decision Aids: An Update from the IPDAS Collaboration

2021 ◽  
pp. 0272989X2110141
Author(s):  
Holly O. Witteman ◽  
Kristin G. Maki ◽  
Gratianne Vaisson ◽  
Jeanette Finderup ◽  
Krystina B. Lewis ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
Rapid Development ◽  
User Involvement ◽  
User Centered Design ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Development Processes ◽  
Systematic Development

Background The 2013 update of the evidence informing the quality dimensions behind the International Patient Decision Aid Standards (IPDAS) offered a model process for developers of patient decision aids. Objective To summarize and update the evidence used to inform the systematic development of patient decision aids from the IPDAS Collaboration. Methods To provide further details about design and development methods, we summarized findings from a subgroup ( n = 283 patient decision aid projects) in a recent systematic review of user involvement by Vaisson et al. Using a new measure of user-centeredness (UCD-11), we then rated the degree of user-centeredness reported in 66 articles describing patient decision aid development and citing the 2013 IPDAS update on systematic development. We contacted the 66 articles’ authors to request their self-reports of UCD-11 items. Results The 283 development processes varied substantially from minimal iteration cycles to more complex processes, with multiple iterations, needs assessments, and extensive involvement of end users. We summarized minimal, medium, and maximal processes from the data. Authors of 54 of 66 articles (82%) provided self-reported UCD-11 ratings. Self-reported scores were significantly higher than reviewer ratings (reviewers: mean [SD] = 6.45 [3.10]; authors: mean [SD] = 9.62 [1.16], P < 0.001). Conclusions Decision aid developers have embraced principles of user-centered design in the development of patient decision aids while also underreporting aspects of user involvement in publications about their tools. Templates may reduce the need for extensive development, and new approaches for rapid development of aids have been proposed when a more detailed approach is not feasible. We provide empirically derived benchmark processes and a reporting checklist to support developers in more fully describing their development processes. [Box: see text]

scholarly journals User Involvement in the Design and Development of Patient Decision Aids and Other Personal Health Tools: A Systematic Review

2021 ◽  
Vol 41 (3) ◽  
pp. 261-274 ◽  
Author(s):  
Gratianne Vaisson ◽  
Thierry Provencher ◽  
Michèle Dugas ◽  
Marie-Ève Trottier ◽  
Selma Chipenda Dansokho ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
User Involvement ◽  
Personal Health ◽  
User Centered Design ◽  
Patient Decision Aid ◽  
Design And Development ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
User Centered

Background When designing and developing patient decision aids, guidelines recommend involving patients and stakeholders. There are myriad ways to do this. We aimed to describe how such involvement occurs by synthesizing reports of patient decision aid design and development within a user-centered design framework and to provide context by synthesizing reports of user-centered design applied to other personal health tools. Methods We included articles describing at least one development step of 1) a patient decision aid, 2) user- or human-centered design of another personal health tool, or 3) evaluation of these. We organized data within a user-centered design framework comprising 3 elements in iterative cycles: understanding users, developing/refining prototype, and observing users. Results We included 607 articles describing 325 patient decision aid projects and 65 other personal health tool projects. Fifty percent of patient decision aid projects reported involving users in at least 1 step for understanding users, 35% in at least 1 step for developing/refining the prototype, and 84% in at least 1 step for observing users’ interaction with the prototype. In comparison, other personal health tool projects reported 91%, 49%, and 92%, respectively. A total of 74% of patient decision aid projects and 92% of other personal health tool projects reported iterative processes, both with a median of 3 iterative cycles. Preliminary evaluations such as usability or feasibility testing were reported in 66% of patient decision aid projects and 89% of other personal health tool projects. Conclusions By synthesizing design and development practices, we offer evidence-based portraits of user involvement. Those wishing to further align patient decision aid design and development with user-centered design methods could involve users earlier, design and develop iteratively, and report processes in greater detail.

scholarly journals User involvement in the development of patient decision aids: A systematic review

2019 ◽  
Author(s):  
Gratianne Vaisson ◽  
Thierry Provencher ◽  
Michele Dugas ◽  
Marie-Eve Trottier ◽  
Selma Chipenda Dansokho ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
User Centered Design ◽  
Patient Decision Aid ◽  
Patient Centered ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
Design Projects ◽  
Development Step ◽  
User Centered

Background: Multiple guidelines recommend involving patients and stakeholders in developing patient decision aids; however, best practices have yet to be identified. User-centered design is a well-established approach for engaging users in developing tools. We aimed to compile reports of patient decision aid development, using a user-centered design framework to synthesize evidence of existing practices and identify potential opportunities for improvement.Methods: We conducted searches in MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore and Google Scholar. We included articles describing (1) at least one development step of a patient decision aid, (2) at least one development step of user- or human-centered design of another patient-centered tool, and/or (3) evaluation of included decision aids and other patient-centered tools. Two analysts independently screened for inclusion, assessed study quality, and extracted data.Results: We included 623 articles describing 390 projects: 325 patient decision aid projects and 65 user-centered design projects. Fifty percent of patient decision aid projects reported involving users in at least one development step for understanding users, 35% in at least one development step for developing/refining the prototype and 84% in at least one development step for directly or indirectly observing prospective users’ interaction with the prototype. User-centered design projects reported 91%, 49% and 92%, respectively. Seventy-four percent of patient decision aid projects reported iterative development processes with median 3 development cycles (interquartile range 2-4); 92% of user-centered design projects reported iterativity, with median 3 development cycles (interquartile range 2-3). Sixty-six percent of patient decision aid projects and 89% of user-centered design projects reported preliminary evaluations such as usability testing or feasibility testing.Conclusions: We identified 3 key opportunities for improving the user-centeredness of patient decision aid development: involving users earlier to understand their needs, goals, strengths, limitations, context and intuitive processes; asking about and observing users’ interactions with developing versions of the decision aid; and reporting changes between iterative cycles. Additionally, developers of patient decision aids and other patient-centered tools may wish to more often involve patients, clinicians and other users in co-design of prototypes and in formal advisory or partnership roles.

scholarly journals Basing Information on Comprehensive, Critically Appraised, and Up-to-Date Syntheses of the Scientific Evidence: An Update from the International Patient Decision Aid Standards

2021 ◽  
pp. 0272989X2199662
Author(s):  
Tammy C. Hoffmann ◽  
Mina Bakhit ◽  
Marie-Anne Durand ◽  
Lilisbeth Perestelo-Pérez ◽  
Catherine Saunders ◽  
...  
Keyword(s):  
Decision Aid ◽  
Scientific Evidence ◽  
Decision Aids ◽  
Future Research ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Research Areas ◽  
Patient Decision ◽  
Evidence Quality ◽  
Emerging Issues

Background Patients and clinicians expect the information in patient decision aids to be based on the best available research evidence. The objectives of this International Patient Decision Aid Standards (IPDAS) review were to 1) check the currency of, and where needed, update evidence for the domain of “basing the information in decision aids on comprehensive, critically appraised, and up-to-date syntheses of the evidence”; 2) analyze the evidence characteristics of decision aids; and 3) propose updates to relevant IPDAS criteria. Methods We searched MEDLINE and PubMed to inform updates of this domain’s definitions, justifications, and components. We also searched 5 sources to identify all publicly available decision aids ( N = 471). Two assessors independently extracted each aid’s evidence characteristics. Results Minor updates to the definitions and theoretical justifications of this IPDAS domain are provided and changes to relevant IPDAS criteria proposed. Nearly all aids (97%) provided a year of creation/update, but most (81%) did not report an explicit update or expiration policy. No scientific references were cited in 33% of aids. Of the 314 that cited at least 1 reference, 39% cited at least 1 guideline, 44% cited at least 1 systematic review, and 23% cited at least 1 randomized trial. In 35%, it was unclear what statement in the aid the citations referred to. Only 14% reported any of the processes used to find and decide on evidence inclusion. Only 14% reported the evidence quality. Many emerging issues and future research areas were identified. Conclusions Although many emerging issues need to be addressed, this IPDAS domain is validated and criteria refined. High-quality patient decision aids should be based on comprehensive and up-to-date syntheses of critically appraised evidence.

Do Patient Decision Aids Meet Effectiveness Criteria of the International Patient Decision Aid Standards Collaboration? A Systematic Review and Meta-analysis

2007 ◽  
Vol 27 (5) ◽  
pp. 554-574 ◽  
Author(s):  
Annette M. O'Connor ◽  
Dawn Stacey ◽  
Michael J. Barry ◽  
Nananda F. Col ◽  
Karen B. Eden ◽  
...  
Keyword(s):  
Systematic Review ◽  
Decision Aid ◽  
Meta Analysis ◽  
Decision Aids ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision

What Is the Effectiveness of Patient Decision Aids for Cancer-Related Decisions? A Systematic Review Subanalysis

2018 ◽  
pp. 1-13 ◽  
Author(s):  
Kristen McAlpine ◽  
Krystina B. Lewis ◽  
Lyndal J. Trevena ◽  
Dawn Stacey
Keyword(s):  
Decision Making ◽  
Cancer Screening ◽  
Decision Aid ◽  
Weighted Mean Difference ◽  
Decision Aids ◽  
Decision Making Process ◽  
Patient Decision Aid ◽  
Weighted Mean ◽  
Patient Decision Aids ◽  
Patient Decision

Purpose To determine the effectiveness of patient decision aids when used with patients who face cancer-related decisions. Patients and Methods Two reviewers independently screened the 105 trials in the original 2017 Cochrane review to identify eligible trials of patient decision aids across the cancer continuum. Primary outcomes were attributes of the choice and decision-making process. Secondary outcomes were patient behavior and health system effects. A meta-analysis was conducted for similar outcome measures. Results Forty-six trials evaluated patient decision aids for cancer care, including 27 on screening decisions (59%), 12 on treatments (26%), four on genetic testing (9%), and three on prevention (6%). Common decisions were aboutprostate cancer screening (30%), colorectal cancer screening (22%), breast cancer treatment (13%), and prostate cancer treatment (9%). Compared with the control groups (usual care or alternative interventions), the patient decision aid group improved the match between the chosen option and the features that mattered most to the patient as demonstrated by improved knowledge (weighted mean difference, 12.88 of 100; 95% CI, 9.87 to 15.89; 24 trials), accurate risk perception (risk ratio [RR], 1.77; 95% CI, 1.22 to 2.56; six trials), and value-choice agreement (RR, 2.76; 95% CI, 1.57 to 4.84; nine trials). Compared with controls, the patient decision aid group improved the decision-making process with decreased decisional conflict (weighted mean difference, −9.56 of 100; 95% CI, −13.90 to −5.23; 12 trials), reduced clinician-controlled decision making (RR, 0.57; 95% CI, 0.41 to 0.79; eight trials), and fewer patients being indecisive (RR, 0.59; 95% CI, 0.45 to 0.78; nine trials). Conclusion Patient decision aids improve the attributes of the choice made and decision-making process for patients who face cancer-related decisions.

scholarly journals Explanation and elaboration of the Standards for UNiversal reporting of patient Decision Aid Evaluations (SUNDAE) guidelines: examples of reporting SUNDAE items from patient decision aid evaluation literature

2018 ◽  
Vol 27 (5) ◽  
pp. 389-412 ◽  
Author(s):  
Aubri S Hoffman ◽  
Karen R Sepucha ◽  
Purva Abhyankar ◽  
Stacey Sheridan ◽  
Hilary Bekker ◽  
...  
Keyword(s):  
Decision Aid ◽  
Decision Aids ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Patient Decision

This Explanation and Elaboration (E&E) article expands on the 26 items in the Standards for UNiversal reporting of Decision Aid Evaluations guidelines. The E&E provides a rationale for each item and includes examples for how each item has been reported in published papers evaluating patient decision aids. The E&E focuses on items key to reporting studies evaluating patient decision aids and is intended to be illustrative rather than restrictive. Authors and reviewers may wish to use the E&E broadly to inform structuring of patient decision aid evaluation reports, or use it as a reference to obtain details about how to report individual checklist items.

scholarly journals Guidance and/or Decision Coaching with Patient Decision Aids: Scoping Reviews to Inform the International Patient Decision Aid Standards (IPDAS)

2021 ◽  
pp. 0272989X2199733
Author(s):  
Anne Christin Rahn ◽  
Janet Jull ◽  
Laura Boland ◽  
Jeanette Finderup ◽  
Marie-Chantal Loiselle ◽  
...  
Keyword(s):  
Decision Aid ◽  
Conceptual Models ◽  
Decision Aids ◽  
Cochrane Review ◽  
Quality Criteria ◽  
Patient Decision Aid ◽  
Patient Decision Aids ◽  
Hand Search ◽  
Patient Decision ◽  
Scoping Reviews

Introduction In 2005, the International Patient Decision Aid Standards (IPDAS) collaboration identified guidance and decision coaching as important dimensions of patient decision aids (PtDAs) and developed a set of quality criteria. We sought to update definitions, theoretical rationale, and evidence for guidance and/or decision coaching used within or alongside PtDAs for the IPDAS update 2.0. Methods We conducted 2 scoping reviews on guidance and decision coaching, including systematic searches and a hand search of the Cochrane Review on PtDAs. Eligible studies were randomized controlled trials (RCTs) on guidance or decision coaching used with/alongside PtDAs. Data, including conceptual models, were summarized narratively and with meta-analyses when appropriate. Results Of 1022 citations, we found no RCTs that evaluated guidance in PtDAs. The 2013 definition for guidance was endorsed, and we made minimal changes to the description of guidance. Of 3039 citations, we identified 21 RCTs on decision coaching informed by 5 conceptual models stating that people exposed to decision coaching are more likely to progress in making informed decisions consistent with their values. Compared to usual care, decision coaching with PtDAs led to improved knowledge mean difference [MD], 19.5/100; 95% confidence interval [CI], 10.0–29.0; 5 RCTs). Compared to decision coaching alone, PtDAs led to a small improvement in knowledge (MD, 3.6/100; 95% CI, 1.0–6.3; 3 RCTs). There were variable effects on other outcomes. We simplified the decision coaching definition slightly and defined minimal decision coaching elements. Conclusion We found no evidence on which to propose changes in guidance in IPDAS. Decision coaching is continuing to be used alongside PtDAs, but there is inadequate evidence on the added effectiveness compared to PtDAs alone. The decision coaching definition was updated with minimal elements.

scholarly journals Experts' views on the implementation of the prenatal screening decision aid in Iran: A qualitative study

2021 ◽  
Author(s):  
Razieh Zahedi ◽  
Leila Nemati-Anaraki ◽  
Shahram Sedghi ◽  
Mamak Shariat
Keyword(s):  
Decision Making ◽  
Qualitative Study ◽  
Decision Aid ◽  
Prenatal Screening ◽  
Decision Aids ◽  
Personal Factors ◽  
Snowball Sampling ◽  
Structured Interviews ◽  
Patient Decision Aids ◽  
Patient Decision

Background & Aim: Patient decision aids are detailed and personalized health education materials that assist patients in decision making. According to expert viewpoints, this study aimed to determine important factors in implementing the prenatal screening decision aid in Iran. Methods & Materials: In this qualitative study, 24 experts, including seven obstetricians, four information scientists, five managers or policymakers, and eight midwives, were selected using purposive and snowball sampling approaches. Semi-structured interviews were conducted to collect the data between January 2020 and June 2020 in Tehran, Iran. A prenatal screening decision aid was presented to the participants, and we asked them to raise their concerns and thoughts regarding the factors influencing the implementation of patient decision aids. We used MAXQDA 10 and applied conventional content analysis for data analysis. Results: Two organizational and personal factors themes were identified to implement Iran's prenatal screening decision aids. Conclusion: We identified the viewpoints of experts regarding major factors in patient decision aids implementation for prenatal screening. Before implementing prenatal screening decision aids in Iran, it would be helpful to consider these organizational and personal factors. Prenatal screening decision aids can provide better information for pregnant women and strengthen their decision-making ability.

scholarly journals Do published patient decision aids for end-of-life care address patients’ decision-making needs? A systematic review and critical appraisal

2019 ◽  
Vol 33 (8) ◽  
pp. 985-1002 ◽  
Author(s):  
Georgina Phillips ◽  
Kate Lifford ◽  
Adrian Edwards ◽  
Marlise Poolman ◽  
Natalie Joseph-Williams
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Decision Aid ◽  
Decision Aids ◽  
Patient Needs ◽  
Patient Decision Making ◽  
Patient Decision Aids ◽  
Patient Decision ◽  
End Of Life Decision ◽  
Life Decision

Background: Many decisions are made by patients in their last months of life, creating complex decision-making needs for these individuals. Identifying whether currently existing patient decision aids address the full range of these patient decision-making needs will better inform end-of-life decision support in clinical practice. Aims and design: This systematic review aimed to (a) identify the range of patients’ decision-making needs and (b) assess the extent to which patient decision aids address these needs. Data sources: MEDLINE, PsycINFO and CINAHL electronic literature databases were searched (January 1990–January 2017), supplemented by hand-searching strategies. Eligible literature reported patient decision-making needs throughout end-of-life decision-making or were evaluations of patient decision aids. Identified decision aid content was mapped onto and assessed against all patient decision-making needs that were deemed ‘addressable’. Results: Twenty-two studies described patient needs, and seven end-of-life patient decision aids were identified. Patient needs were categorised, resulting in 48 ‘addressable’ needs. Mapping needs to patient decision aid content showed that 17 patient needs were insufficiently addressed by current patient decision aids. The most substantial gaps included inconsistent acknowledgement, elicitation and documentation of how patient needs varied individually for the level of information provided, the extent patients wanted to participate in decision-making, and the extent they wanted their families and associated healthcare professionals to participate. Conclusion: Patient decision-making needs are broad and varied. Currently developed patient decision aids are insufficiently addressing patient decision-making needs. Improving future end-of-life patient decision aid content through five key suggestions could improve patient-focused decision-making support at the end of life.

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