20th Anniversary Update of the Ottawa Decision Support Framework: Part 2 Subanalysis of a Systematic Review of Patient Decision Aids

Background. The Ottawa Decision Support Framework (ODSF) has guided the development of patient decision aids (PtDAs) for 20 years and needs updating across a range of decisions and hypothesized outcomes. Purpose. To determine the effectiveness of ODSF-developed PtDAs on hypothesized outcomes and to recommend framework changes. Data Source. A subanalysis of randomized controlled trials included in the 2017 Cochrane review of PtDAs comparing PtDAs to usual care in adults considering health treatment or screening decisions (searched to 2015). Study Selection. Trials in the original review that evaluated ODSF-developed PtDAs. Data Synthesis. Meta-analyses of ODSF outcomes with similar measurements and descriptions of other reported outcomes. Results. Of 105 trials, 24 evaluated ODSF-developed PtDAs. Compared with usual care, ODSF PtDAs improved knowledge (mean difference [MD] 13.85; 95% confidence interval [CI] 10.32−17.37; 14 trials), increased accurate risk perceptions (risk ratio [RR] 2.41; 95% CI 1.66−3.48; 7 trials), and increased congruence between informed values and chosen options (RR 1.32; 95% CI 1.09−1.59; 4 trials). They reduced perceived decisional needs as measured using the Decisional Conflict Scale (MD −5.92; 95% CI −8.58 to −3.26; 15 trials) and the proportion of undecided patients (RR 0.65; 95% CI 0.50−0.83; 13 trials). Non-ODSF PtDAs, designed with or without a specific framework, also outperformed usual care. Few ODSF trials measured secondary outcomes. Limitations. The included trials had heterogeneity. Conclusion. ODSF PtDAs address decisional needs and improve decision quality; the best indicator of addressing perceived uncertainty is “proportion undecided.” Secondary ODSF outcomes should be reduced to adherence to one’s chosen option and use/costs of health services, which warrant further research.

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20th Anniversary Ottawa Decision Support Framework: Part 3 Overview of Systematic Reviews and Updated Framework

Medical Decision Making ◽

10.1177/0272989x20911870 ◽

2020 ◽

Vol 40 (3) ◽

pp. 379-398 ◽

Cited By ~ 3

Author(s):

Dawn Stacey ◽

France Légaré ◽

Laura Boland ◽

Krystina B. Lewis ◽

Marie-Chantal Loiselle ◽

...

Keyword(s):

Decision Support ◽

Systematic Reviews ◽

Decision Aids ◽

Decisional Conflict ◽

Decision Quality ◽

Current Evidence ◽

Inadequate Knowledge ◽

Decision Support Framework ◽

Overview Of Systematic Reviews ◽

Ottawa Decision Support Framework

Introduction. The Ottawa Decision Support Framework (ODSF) has guided practitioners and patients facing difficult decisions for 20 years. It asserts that decision support interventions that address patients’ decisional needs improve decision quality. Purpose. To update the ODSF based on a synthesis of evidence. Methods. We conducted an overview of systematic reviews, searching 9 electronic databases. Eligible reviews included decisional needs assessments, decision support interventions, and decisional outcome measures guided by the ODSF. We extracted data and synthesized results narratively. Eight ODSF developers/expert users from 4 disciplines revised the ODSF. Results. Of 4656 citations, we identified 4 eligible reviews (>250 studies, >100 different decisions, >50,000 patients, 18 countries, 5 continents). They reported current ODSF decisional needs and their most frequent manifestations in the areas of inadequate knowledge/information, unclear values, decisional conflict/uncertainty, and inadequate support. They uncovered 11 new manifestations of 6 decisional needs. Using the Decisional Conflict Scale (DCS) to assess decisional needs, average scores were elevated at baseline and declined shortly after decision making, even without information interventions. Patient decision aids were superior to usual care in reducing total DCS scores and improving decision quality. We revised the ODSF by refining definitions of 6 decisional needs and adding new interventions to address 4 needs. We added a decision process outcome and eliminated secondary outcomes unlikely to improve across a range of decisions, retaining the implementation/continuance of the chosen option and appropriate use/costs of health services. Conclusions. We updated the ODSF to reflect the current evidence and identified implications for practice and further research.

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Are We Improving? Update and Critical Appraisal of the Reporting of Decision Process and Quality Measures in Trials Evaluating Patient Decision Aids

Medical Decision Making ◽

10.1177/0272989x211011120 ◽

2021 ◽

pp. 0272989X2110111

Author(s):

Logan Trenaman ◽

Jesse Jansen ◽

Jennifer Blumenthal-Barby ◽

Mirjam Körner ◽

Joanne Lally ◽

...

Keyword(s):

Systematic Review ◽

Decision Aids ◽

Cochrane Review ◽

Informed Choice ◽

Cochrane Collaboration ◽

Decision Quality ◽

Quality Of Reporting ◽

Patient Decision Aids ◽

Patient Decision ◽

Reported Data

Background In 2014, a systematic review found large gaps in the quality of reporting of measures used in 86 published trials evaluating the effectiveness of patient decision aids (PtDAs). The purpose of this study was to update that review. Methods We examined measures of decision making used in 49 randomized controlled trials included in the 2014 and 2017 Cochrane Collaboration systematic review of PtDAs. Data on development of the measures, reliability, validity, responsiveness, precision, interpretability, feasibility, and acceptability were independently abstracted by 2 paired reviewers. Results Information from 273 measures was abstracted, and 109 of these covered the core domains of decision processes ( n = 55) and decision quality including informed choice/knowledge ( n = 48) and values-choice concordance ( n = 12). Very few studies reported data on the performance and clinical sensibility of measures, with reliability (23%) and validity (6%) being the most common. Studies using new measures were less likely to include information about their psychometric performance compared with previously published measures. Limitations The review was limited to reporting of measures in studies included in the Cochrane review and did not consult prior publications. Conclusion There continues to be very little reported about the development or performance of measures used to evaluate the effectiveness of PtDAs in published trials. Minimum reporting standards have been published, and efforts to require investigators to use them are needed.

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20th Anniversary Update of the Ottawa Decision Support Framework Part 1: A Systematic Review of the Decisional Needs of People Making Health or Social Decisions

Medical Decision Making ◽

10.1177/0272989x20936209 ◽

2020 ◽

Vol 40 (5) ◽

pp. 555-581 ◽

Cited By ~ 3

Author(s):

Lauren Hoefel ◽

Annette M. O’Connor ◽

Krystina B. Lewis ◽

Laura Boland ◽

Lindsey Sikora ◽

...

Keyword(s):

Systematic Review ◽

Decision Support ◽

Family Involvement ◽

Information Overload ◽

Decision Makers ◽

Difficult Decision ◽

Social Decisions ◽

Patient Decision ◽

Decision Support Framework ◽

Ottawa Decision Support Framework

Background. The Ottawa Decision Support Framework (ODSF) has been used for 20 years to assess and address people’s decisional needs. The evidence regarding ODSF decisional needs has not been synthesized. Objectives. To synthesize evidence from ODSF-based decisional needs studies, identify new decisional needs, and validate current ODSF decisional needs. Methods. A mixed-studies systematic review. Nine electronic databases were searched. Inclusion criteria: studies of people’s decisional needs when making health or social decisions for themselves, a child, or a mentally incapable person, as reported by themselves, families, or practitioners. Two independent authors screened eligibility, extracted data, and quality appraised studies using the Mixed Methods Appraisal Tool. Data were analyzed using narrative synthesis. Results. Of 4532 citations, 45 studies from 7 countries were eligible. People’s needs for 101 unique decisions (85 health, 16 social) were reported by 2857 patient decision makers ( n = 36 studies), 92 parent decision makers ( n = 6), 81 family members ( n = 5), and 523 practitioners ( n = 21). Current ODSF decisional needs were reported in 2 to 40 studies. For 6 decisional needs, there were 11 new (manifestations): 1) information (overload, inadequacy regarding others’ experiences with options), 2) difficult decisional roles (practitioner, family involvement, or deliberations), 3) unrealistic expectations (difficulty believing outcome probabilities apply to them), 4) personal needs (religion/spirituality), 5) difficult decision timing (unpredictable), and 6) unreceptive decisional stage (difficulty accepting condition/need for treatment, powerful emotions limiting information processing, lacking motivation to consider delayed/unpredictable decisions). Limitations. Possible publication bias (only peer-reviewed journals included). Possible missed needs (non-ODSF studies, patient decision aid development studies, 3 ODSF needs added in 2006). Conclusion. We validated current decisional needs, identified 11 new manifestations of 6 decisional needs, and recommended ODSF revisions.

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

Medical Decision Making ◽

10.1177/0272989x21997330 ◽

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.

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Providing Balanced Information about Options in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Medical Decision Making ◽

10.1177/0272989x211021397 ◽

2021 ◽

pp. 0272989X2110213

Author(s):

Richard W. Martin ◽

Stina Brogård Andersen ◽

Mary Ann O’Brien ◽

Paulina Bravo ◽

Tammy Hoffmann ◽

...

Keyword(s):

Visual Information ◽

Decision Aids ◽

Cochrane Review ◽

Multiple Perspectives ◽

Patient Decision Aids ◽

Design Elements ◽

Patient Decision ◽

Definition Of ◽

Balanced Information ◽

Structure And Design

Background The objective of this International Patient Decision Aids Standard (IPDAS) review is to update and synthesize theoretical and empirical evidence on how balanced information can be presented and measured in patient decision aids (PtDAs). Methods A multidisciplinary team conducted a scoping review using 2 search strategies in multiple electronic databases evaluating the ways investigators defined and measured the balance of information provided about options in PtDAs. The first strategy combined a search informed by the Cochrane Review of the Effectiveness of Decision Aids with a search on balanced information. The second strategy repeated the search published in the 2013 IPDAS update on balanced presentation. Results Of 2450 unique citations reviewed, the full text of 168 articles was screened for eligibility. Sixty-four articles were included in the review, of which 13 provided definitions of balanced presentation, 8 evaluated mechanisms that may introduce bias, and 42 quantitatively measured balanced with methods consistent with the IPDAS criteria in PtDAs. The revised definition of balanced information is, “Objective, complete, salient, transparent, evidence-informed, and unbiased presentation of text and visual information about the condition and all relevant options (with important elements including the features, benefits, harms and procedures of those options) in a way that does not favor one option over another and enables individuals to focus attention on important elements and process this information.” Conclusions Developers can increase the balance of information in PtDAs by informing their structure and design elements using the IPDAS checklist. We suggest that new PtDA components pertaining to balance be evaluated for cognitive bias with experimental methods as well by objectively evaluating patients’ and content experts’ beliefs from multiple perspectives.

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Evaluation of decision support tools for patients with advanced cancer: A systematic review of literature

Palliative & Supportive Care ◽

10.1017/s1478951518000512 ◽

2018 ◽

Vol 17 (03) ◽

pp. 356-364 ◽

Cited By ~ 1

Author(s):

Diane Tapp ◽

Marie-Claude Blais

Keyword(s):

Palliative Care ◽

Decision Support ◽

Advanced Cancer ◽

Decision Aids ◽

Quality Standard ◽

Decision Support Tools ◽

Patient Decision Aids ◽

Ottawa Hospital ◽

Patient Decision ◽

Support Tools

AbstractObjectiveMedical decisions in the context of advanced cancer are more based on patient values and preferences than during the early stages of the disease. The implementation of shared decision-making is particularly important with an oncology palliative care population. However, few decision support tools focus on this population. This literature review aims to identify decision support tools related to palliative care for an oncological population and to assess their quality using International Patient Decision Aids Standards criteria.MethodThe tools were identified through PsycINFO, EMBASE, MEDLINE, and CINAHL databases; the inventory of tools to assist the decisions of the Ottawa Hospital Research Institute; and through the register of Cochrane trials. They were then evaluated using the third version of the International Patient Decision Aids Standards instrument.ResultSixteen tools were identified, which targeted five types of cancer and addressed a particular decision or the use of chemotherapy in addition to palliative care. The quality of the reviewed tools varies.Significance of resultsClinicians can use four decision support tools related to palliative care with an oncology population that meet a certain quality standard. Further studies are needed to develop new decision support tools targeting more types of cancer and decisions.

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Problem with patient decision aids

BMJ evidence-based medicine ◽

10.1136/bmjebm-2020-111371 ◽

2020 ◽

pp. bmjebm-2020-111371

Author(s):

Joshua R Zadro ◽

Adrian C Traeger ◽

Simon Décary ◽

Mary O'Keeffe

Keyword(s):

Decision Making ◽

Risk Perceptions ◽

Patient Involvement ◽

Decision Aids ◽

Quality Care ◽

Medical Overuse ◽

Patient Decision Aids ◽

Patient Decision ◽

Patient Values

Patient decision aids are evidence-based tools designed to help patients make specific and deliberated choices among healthcare options. Research shows that patient decision aids increase knowledge, accuracy of risk perceptions, alignment of care with patient values and preferences, and patient involvement in decision making. Some patient decision aids can reduce the use of invasive and potentially low-value procedures. On this basis, clinical practice guidelines and international organisations have begun to recommend the use of patient decision aids and shared decision making as a strategy to reduce medical overuse. Although patient decision aids hold promise for improving healthcare, there are fundamental issues with patient decision aids that need to be addressed before further progress can be made. The problems with patient decision aids are: (1) Guidelines for developing patient decision aids may not be sufficient to ensure developers select the best available evidence and present it appropriately; (2) Biased presentation of low-certainty evidence is common and (3) Biased presentation of low-certainty evidence is misleading, and could inadvertently support, low-value care. We explore these issues in the article and present a case study of online patient decision aids for musculoskeletal pain. We suggest ways to ensure patient decision aids help patients understand the evidence and, where possible, support high-quality care.

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Comparison of the Effects of a Pharmaceutical Industry Decision Guide and Decision Aids on Patient Choice to Intensify Therapy in Rheumatoid Arthritis

Medical Decision Making ◽

10.1177/0272989x17696995 ◽

2017 ◽

Vol 37 (5) ◽

pp. 577-588 ◽

Cited By ~ 3

Author(s):

Richard W. Martin ◽

Ryan D. Enck ◽

Donald J. Tellinghuisen ◽

Aaron T. Eggebeen ◽

James D. Birmingham ◽

...

Keyword(s):

Rheumatoid Arthritis ◽

Decision Support ◽

Pharmaceutical Industry ◽

Decision Aids ◽

Mail Survey ◽

Mediating Effect ◽

Patient Choice ◽

Persuasive Communication ◽

Patient Decision Aids ◽

Patient Decision

Objective. To compare the effects a pharmaceutical industry decision guide and International Patient Decision Aids Standard (IPDAS) compliant patient decision aids (PtDA) on patient medication beliefs and choice to intensify therapy. Methods. Rheumatoid arthritis (RA) patients, who had never taken etanercept (Enbrel), took part in a mail survey. They were presented with a hypothetical decision scenario where they were asked to consider adding etanercept to their current regimen. Each patient was randomized to review 1 of 3 forms of an etanercept-specific decision support: a long PtDA (LONG DA), a short PtDA (SHORT DA), or the manufacturer’s Enbrel decision guide (Pharm Booklet). Results. We had 402 RA patients participate in the study (response rate, 52%). Of the patients randomized to the Pharm Booklet, 30.6% elected to initiate etanercept. Only 14.6% and 14.0% of patients who reviewed the LONG DA or SHORT DA choose to take etanercept (χ2 = 15.7; P < 0.001). Patients who reviewed the LONG DA or SHORT DA had a greater increase in knowledge about etanercept than those who reviewed the Pharm Booklet. There was no difference in decisional conflict among the groups. A logistic regression model explained 44.2% (R2 = 0.442) of patient choice to intensify therapy by initiating etanercept. The strongest predictor of choice to intensify therapy were beliefs about etanercept’s ability to improve symptoms (OR = 2.56, 96%CI [1.71, 3.80]), and its use by others like the respondent (OR = 2.24, 95%CI [1.49, 3.35]). Mediation analysis confirmed the presence of a partial mediating effect of decision support on patients’ intent to take etanercept (OR = 0.59, 95%CI [0.39, 0.89]). Conclusions. Patients supported by the Pharm Booklet were twice as likely to choose to intensify therapy. The Pharm Booklet’s effects are partially mediated through persuasive communication techniques that influence patients’ beliefs that symptoms will improve, and increase social normative beliefs, rather than by increasing the relevant knowledge, clarifying patient values about positive or negative treatment outcomes, or increasing their self-efficacy.

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