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Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making.

ABSTRACT: BACKGROUND:Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly. METHODS:We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys with topics such as informational/decisional needs of users and requirements for PDAs. Our user-base consisted of 8 urologists, 4 radiation oncologists, 2 oncology nurses, 8 general practitioners, 19 former prostate cancer patients, 4 usability experts and 11 healthy volunteers. RESULTS:Informational needs for patients centered on three key factors: treatment experience, post-treatment quality of life, and the impact of side effects. Patients and clinicians valued a PDA that presents balanced information on these factors through simple understandable language and visual aids. Usability questionnaires revealed that patients were more satisfied overall with the PDA than clinicians; however, both groups had concerns that the PDA might lengthen consultation times (42 and 41%, respectively). The PDA is accessible on http://beslissamen.nl/ . CONCLUSIONS:User-centered design provided valuable insights into PDA requirements but challenges in integrating diverse perspectives as clinicians focus on clinical outcomes while patients also consider quality of life. Nevertheless, it is crucial to involve a broad base of clinical users in order to better understand the decision-making process and to develop a PDA that is accurate, usable, and acceptable.

SUBMITTER: Ankolekar A

PROVIDER: S-EPMC6624887 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making.

Ankolekar Anshu A Vanneste Ben G L BGL Bloemen-van Gurp Esther E van Roermund Joep G JG van Limbergen Evert J EJ van de Beek Kees K Marcelissen Tom T Zambon Victor V Oelke Matthias M Dekker Andre A Roumen Cheryl C Lambin Philippe P Berlanga Adriana A Fijten Rianne R

BMC medical informatics and decision making 20190711 1

<h4>Background</h4>Patient decision aids (PDAs) can support the treatment decision making process and empower patients to take a proactive role in their treatment pathway while using a shared decision-making (SDM) approach making participatory medicine possible. The aim of this study was to develop a PDA for prostate cancer that is accurate and user-friendly.<h4>Methods</h4>We followed a user-centered design process consisting of five rounds of semi-structured interviews and usability surveys wi ...[more]

PMID: 31296199

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Project description:Objective: The objective was to develop a decision aid (DA) to facilitate shared decision making (SDM) around whether to obtain computed tomography (CT) imaging in patients presenting to the emergency department (ED) with suspected uncomplicated ureterolithiasis.Methods: We used evidence-based DA development methods, including qualitative methods and iterative stakeholder engagement, to develop and refine a DA. Guided by the Ottawa Decision Support Framework, International Patient Decision Aid Standards (IPDAS), and a steering committee made up of stakeholders, we conducted interviews and focus groups with a purposive sample of patients, community members, emergency clinicians, and other stakeholders. We used an iterative process to code the transcripts and identify themes. We beta-tested the DA with patient-clinician dyads facing the decision in real time.Results: From August 2018 to August 2019, we engaged 102 participants in the design and iterative refinement of a DA focused on diagnostic options for patients with suspected ureterolithiasis. Forty-six were ED patients, community members, or patients with ureterolithiasis, and the remaining were emergency clinicians (doctors, residents, advanced practitioners), researchers, urologists, nurses, or other physicians. Patients and clinicians identified several key decisional needs including an understanding of accuracy, uncertainty, radiation exposure/cancer risk, and clear return precautions. Patients and community members identified facilitators to SDM, such as a checklist of signs and symptoms. Many stakeholders, including both patients and ED clinicians, expressed a strong pro-CT bias. A six-page DA was developed, iteratively refined, and beta-tested.Conclusions: Using stakeholder engagement and qualitative inquiry, we developed an evidence-based DA to facilitate SDM around the question of CT scan utilization in patients with suspected uncomplicated ureterolithiasis. Future research will test the efficacy of the DA in facilitating SDM.

Project description:Clinicians face challenges in promoting colorectal cancer screening due to multiple competing demands. A decision aid that clarifies patient preferences and improves decision quality can aid shared decision making and be effective at increasing colorectal cancer screening rates. However, exactly how such an intervention improves shared decision making is unclear. This study, funded by the National Cancer Institute, seeks to provide detailed understanding of how an interactive decision aid that elicits patient's risks and preferences impacts patient-clinician communication and shared decision making, and ultimately colorectal cancer screening adherence.This is a two-armed single-blinded randomized controlled trial with the target of 300 patients per arm. The setting is eleven community and three academic primary care practices in Metro Detroit. Patients are men and women aged between 50 and 75 years who are not up to date on colorectal cancer screening. ColoDATES Web (intervention arm), a decision aid that incorporates interactive personal risk assessment and preference clarification tools, is compared to a non-interactive website that matches ColoDATES Web in content but does not contain interactive tools (control arm). Primary outcomes are patient uptake of colorectal cancer screening; patient decision quality (knowledge, preference clarification, intent); clinician's degree of shared decision making; and patient-clinician concordance in the screening test chosen. Secondary outcome incorporates a Structural Equation Modeling approach to understand the mechanism of the causal pathway and test the validity of the proposed conceptual model based on Theory of Planned Behavior. Clinicians and those performing the analysis are blinded to arms.The central hypothesis is that ColoDATES Web will improve colorectal cancer screening adherence through improvement in patient behavioral factors, shared decision making between the patient and the clinician, and concordance between the patient's and clinician's preferred colorectal cancer screening test. The results of this study will be among the first to examine the effect of a real-time preference assessment exercise on colorectal cancer screening and mediators, and, in doing so, will shed light on the patient-clinician communication and shared decision making 'black box' that currently exists between the delivery of decision aids to patients and subsequent patient behavior.ClinicalTrials.gov ID NCT01514786.

Project description:BACKGROUND:There is little information about the functions and behavior change techniques (BCTs) needed to implement shared decision making (SDM) in clinical practice. To guide future implementation initiatives, we sought to develop a BCT taxonomy for SDM implementation interventions. METHODS:This study is a secondary analysis of a 2018 Cochrane review on interventions for increasing the use of shared decision making by healthcare professionals. We examined all 87 studies included in the review. We extracted relevant information on each study intervention into a spreadsheet. Coders had undergone a training workshop on intervention functions and online training on BCT Taxonomy version 1 (BCTTv1). We performed functions and BCTs coding trials, and identified coding rules. We used Michie's guide for designing behavior change interventions to code the functions and BCTs used in the interventions. Coders met to compare coding and discrepancies were discussed until consensus was reached. Data was analyzed using simple descriptive statistics. RESULTS:Overall, 7 functions, 24 combinations of functions and 32 BCTs were used in the 87 SDM implementation interventions. The mean of functions per intervention was 2.5 and the mean of BCTs per intervention was 3.7. The functions Coercion and Restriction were not found. The most common function was Education (73 studies). Three combinations of functions were most common (e.g: Education + Persuasion, used in 10 studies). The functions associated with more effective SDM implementation interventions were Modeling and Training. The most effective combination of functions was Education + Training + Modeling + Enablement. The most commonly used BCT was Instruction on how to perform the behavior (43 studies). BCTs associated with more effective SDM implementation interventions were: Instruction on how to perform the behavior, Demonstration of the behavior, Feedback on behavior, Pharmacological support, Material reward, and Biofeedback. Twenty-five BCTs were associated with less effective SDM implementation interventions. Four new BCTs were identified: General information to support the behavior, Tailoring, Exercises to conceptually prepare for the behavior, and Experience sharing and learning. CONCLUSIONS:We established a BCT taxonomy specific to the field of SDM to guide future SDM implementation interventions. Four new BCTs should be added to BCTTv1.

Project description:Background. Although effective interventions for shared decision making (SDM) exist, there is a lack of uptake of these tools into clinical practice. "Nudges," which draw on behavioral economics and target automatic thinking processes, are used by policy makers to influence population-level behavior change. Nudges have not been applied in the context of SDM interventions but have potential to influence clinician motivation, a primary barrier to long-term adoption of SDM tools. Objective. Describe, evaluate, and propose recommendations for the use of a behavioral economics framework (MINDSPACE) on clinician motivation and behavior during implementation of a validated decision aid (DA) for left ventricular assist device at nine hospitals. Methods. Qualitative thematic analysis of process notes from stakeholder meetings during the first 6 months of implementation to identify examples of how the MINDSPACE framework was operationalized. Quantitative implementation progress was evaluated using the RE-AIM framework. Results. MINDSPACE components were translated into concrete approaches that leveraged influential stakeholders, fostered ownership over the DA and positive emotional associations, spread desirable norms across sites, and situated the DA within established default processes. DA reach to eligible patients increased from 9.8% in the first month of implementation to 70.0% in the sixth month. Larger gains in reach were observed following meetings using MINDSPACE approaches. Limitations. The MINDSPACE framework does not capture all possible influences on behavior and responses to nudges may differ across populations. Conclusions. Behavioral economics can be applied to implementation science to foster uptake of SDM tools by increasing clinician motivation. Our recommendations can help other researchers effectively apply these approaches in real-world settings when there are often limited incentives and opportunities to change organizational- or structural-level factors.

Dataset Information

Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making.

Publications

Development and validation of a patient decision aid for prostate Cancer therapy: from paternalistic towards participative shared decision making.

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