The loss of reason in patient decision aid research: Do checklists damage the quality of informed choice interventions?

2010 ◽  
Vol 78 (3) ◽  
pp. 357-364 ◽  
Author(s):  
Hilary L. Bekker
Keyword(s):  
Decision Aid ◽  
Informed Choice ◽  
Patient Decision Aid ◽  
Patient Decision

scholarly journals Informed Choice for Participation in Down Syndrome Screening: Development and Content of a Web-Based Decision Aid

2015 ◽  
Vol 4 (3) ◽  
pp. e113 ◽  
Author(s):  
Mette Maria Skjøth ◽  
Helle Ploug Hansen ◽  
Eva Draborg ◽  
Claus Duedal Pedersen ◽  
Ronald F Lamont ◽  
...  
Keyword(s):  
Down Syndrome ◽  
Pregnant Women ◽  
Decision Aid ◽  
Screening Program ◽  
Informed Choice ◽  
Care Providers ◽  
Patient Decision Aid ◽  
Web Based ◽  
Patient Decision ◽  
Down Syndrome Screening

Background In Denmark, all pregnant women are offered screening in early pregnancy to estimate the risk of having a fetus with Down syndrome. Pregnant women participating in the screening program should be provided with information and support to allow them to make an informed choice. There is increasing interest in the use of Web-based technology to provide information and digital solutions for the delivery of health care. Objective The aim of this study was to develop an eHealth tool that contained accurate and relevant information to allow pregnant women to make an informed choice about whether to accept or reject participation in screening for Down syndrome. Methods The development of the eHealth tool involved the cooperation of researchers, technology experts, clinicians, and users. The underlying theoretical framework was based on participatory design, the International Patient Decision Aid Standards (IPDAS) Collaboration guide to develop a patient decision aid, and the roadmap for developing eHealth technologies from the Center for eHealth Research and Disease Management (CeHRes). The methods employed were a systematic literature search, focus group interviews with 3 care providers and 14 pregnant women, and 2 weeks of field observations. A qualitative descriptive approach was used in this study. Results Relevant themes from pregnant women and care providers with respect to information about Down syndrome screening were identified. Based on formalized processes for developing patient decision aids and eHealth technologies, an interactive website containing information about Down syndrome, methods of screening, and consequences of the test was developed. The intervention was based on user requests and needs, and reflected the current hospital practice and national guidelines. Conclusions This paper describes the development and content of an interactive website to support pregnant women in making informed choices about Down syndrome screening. To develop the website, we used a well-structured process based on scientific evidence and involved pregnant women, care providers, and technology experts as stakeholders. To our knowledge, there has been no research on the combination of IPDAS standards and the CeHRes roadmap to develop an eHealth tool to target information about screening for Down syndrome.

scholarly journals Measures of Decision Aid Quality Are Preference-Sensitive and Interest-Conflicted – 2: Empirical Measures

2020 ◽  
Author(s):  
Jack Dowie ◽  
Mette Kjer Kaltoft ◽  
Vije Kumar Rajput
Keyword(s):  
Policy Making ◽  
Decision Aid ◽  
Research Policy ◽  
Healthcare Research ◽  
Decision Quality ◽  
Patient Decision Aid ◽  
Empirical Measures ◽  
Patient Decision ◽  
Quality Instruments

Empirical measures of ‘decision aid quality’, like normative ones, are of a formative construct and therefore embody interest-conflicted preferences in their criteria selection and weighting. The preferences of the International Patient Decision Aid Standards consortium distinguish the quality of the decision-making process and the quality of the choice that is made ‘(i.e., decision quality)’. The Decision Conflict Scale features heavily in their profile measure of the former and Decision Quality Instruments (DQIs), have been developed by members of the consortium to measure the latter. We confirm that both of these, and other components, like the higher-level measures, are preference-sensitive and interest-conflicted. Non-financial interest-conflicted preferences are endemic in healthcare research, policy-making, and practice. That they are inevitable means the main problem lies in the denial of this and attitude to and behaviour towards alternatives, equally interest-conflicted.

scholarly journals Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

PLoS ONE ◽  
2009 ◽  
Vol 4 (3) ◽  
pp. e4705 ◽  
Author(s):  
Glyn Elwyn ◽  
Annette M. O'Connor ◽  
Carol Bennett ◽  
Robert G. Newcombe ◽  
Mary Politi ◽  
...  
Keyword(s):  
Decision Support ◽  
Decision Aid ◽  
Patient Decision Aid ◽  
Patient Decision

Is quality of life a suitable measure of patient decision aid effectiveness? Sub-analysis of a Cochrane systematic review

2018 ◽  
Vol 28 (3) ◽  
pp. 593-607 ◽  
Author(s):  
Claudia Rutherford ◽  
Madeleine T. King ◽  
Phyllis Butow ◽  
France Legare ◽  
Anne Lyddiatt ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Decision Aid ◽  
Aid Effectiveness ◽  
Patient Decision Aid ◽  
Cochrane Systematic Review ◽  
Patient Decision ◽  
Suitable Measure

scholarly journals Optimising intervals for abdominal aortic aneurysm surveillance: A pilot study analysing patient opinion

Ultrasound ◽  
2020 ◽  
pp. 1742271X2095250
Author(s):  
Lisa Robertson
Keyword(s):  
Abdominal Aortic Aneurysm ◽  
Aortic Aneurysm ◽  
Decision Aid ◽  
Informed Choice ◽  
Patient Decision Aid ◽  
Specific Patient ◽  
Patient Decision ◽  
Abdominal Aortic ◽  
Surveillance Interval ◽  
Patient Opinion

Introduction Optimising abdominal aortic aneurysm surveillance intervals will improve current surveillance programmes. To the author’s knowledge, no known study has exclusively asked patient opinion with regards to their surveillance interval. The aim of this study was to therefore determine a patient’s perspective of their optimal intervals, encouraging shared decision-making and creating a patient-focused service. Methods Fifty patients, currently under abdominal aortic aneurysm surveillance, were interviewed. Patients were asked their opinions before and after seeing a patient decision aid. A patient decision aid presents information of risk in an easy-to-understand format. This specific patient decision aid, designed and created for this study, informed patients of the ‘risk of exceeding the 5.5 cm surgical threshold’ with regards to various surveillance intervals. The chosen optimal surveillance interval was recorded for each patient, and a median interval was calculated for each abdominal aortic aneurysm group. Groups were categorised based upon maximum aortic diameter (3.0–3.4 cm, 3.5–3.9 cm, 4.0–4.4 cm and 4.5–4.9 cm). Results After assessing the patient decision aid, the median surveillance interval calculated for each abdominal aortic aneurysm group was 24 months (3.0–3.4 cm), 12 months (3.5–3.9 cm), 12 months (4.0–4.4 cm) and 6 months (4.5–4.9 cm), respectively. The majority of patients (78%, n = 39) agreed that the patient decision aid was a useful tool to help make an informed choice. Conclusion Overall, patients in abdominal aortic aneurysm groups 3.0–3.4 cm and 4.5–4.9 cm would choose to lengthen abdominal aortic aneurysm surveillance intervals. Lengthening the current surveillance intervals to 24 months (currently 12 months) for abdominal aortic aneurysm group 3.0–3.4 cm and to 6 months (currently 3 months) for abdominal aortic aneurysm group 4.5–4.9 cm would not only increase capacity but also reflect the needs and wishes of those using the National Health Service. The use of a patient decision aid is an effective way of communicating, to the patient, the risk of the proposed changes and thus alleviating potential anxiety.

scholarly journals Improving treatment decision-making in bipolar II disorder: a phase II randomised controlled trial of an online patient decision-aid

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Alana Fisher ◽  
Rachael Keast ◽  
Daniel Costa ◽  
Louise Sharpe ◽  
Vijaya Manicavasagar ◽  
...  
Keyword(s):  
Decision Making ◽  
Decision Aid ◽  
Treatment Decision ◽  
Decisional Conflict ◽  
Patient Decision Aid ◽  
Treatment Decision Making ◽  
Patient Decision ◽  
Potential Efficacy ◽  
Bipolar Ii

Abstract Background Many patients with bipolar II disorder (BPII) prefer to be more informed and involved in their treatment decision-making than they currently are. Limited knowledge and involvement in one’s treatment is also likely to compromise optimal BPII management. This Phase II RCT aimed to evaluate the acceptability, feasibility, and safety of a world-first patient decision-aid website (e-DA) to improve treatment decision-making regarding options for relapse prevention in BPII. The e-DA’s potential efficacy in terms of improving quality of the decision-making process and quality of the decision made was also explored. Methods The e-DA was based on International Patient Decision-Aid Standards and developed via an iterative co-design process. Adults with BPII diagnosis (n = 352) were recruited through a specialist outpatient clinical service and the social media of leading mental health organisations. Participants were randomised (1:1) to receive standard information with/without the e-DA (Intervention versus Control). At baseline (T0), post-treatment decision (T1) and at 3 months’ post-decision follow-up (T2), participants completed a series of validated and purpose-designed questionnaires. Self-report and analytics data assessed the acceptability (e.g., perceived ease-of-use, usefulness; completed by Intervention participants only), safety (i.e., self-reported bipolar and/or anxiety symptoms), and feasibility of using the e-DA (% accessed). For all participants, questionnaires assessed constructs related to quality of the decision-making process (e.g., decisional conflict) and quality of the decision made (e.g., knowledge of treatment options and outcomes). Results Intervention participants endorsed the e-DA as acceptable and feasible to use (82.1–94.6% item agreement); most self-reported using the e-DA either selectively (51.8%; relevant sections only) or thoroughly (34%). Exploratory analyses indicated the e-DA’s potential efficacy to improve decision-making quality; most between-group standardised mean differences (SMD) were small-to-moderate. The largest potential effects were detected for objective treatment knowledge (− 0.69, 95% CIs − 1.04, − 0.33 at T1; and − 0.57, 95% CIs − 0.99,-0.14 at T2), decisional regret at T2 (0.42, 95% CIs 0.01, 0.84), preparation for decision-making at T1 (− 0.44, 95% CIs − 0.81, − 0.07), and the Decisional Conflict Scale Uncertainty subscale (0.42, 95% CIs 0.08, 0.08) and Total (0.36, 95% CIs 0.30, 0.69) scores, with all SMDs favouring the Intervention over the Control conditions. Regarding safety, e-DA use was not associated with worse bipolar symptoms or anxiety. Conclusion The e-DA appears to be acceptable, feasible, safe and potentially efficacious at improving patients’ decision-making about BPII treatment. Findings also support the future adoption of the e-DA into patient care for BPII to foster treatment decisions based on the best available evidence and patient preferences. Trial registration Australian New Zealand Clinical Trials Registry ACTRN12617000840381 (prospectively registered 07/06/2017).

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]

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