Designing for patient decision-making: Design challenges generated by patients with atrial fibrillation during evaluation of a decision aid prototype.
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ABSTRACT:
SUBMITTER: Fanio J
PROVIDER: S-EPMC9854261 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
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Designing for patient decision-making: Design challenges generated by patients with atrial fibrillation during evaluation of a decision aid prototype.
Fanio Janette J Zeng Erin E Wang Brian B Slotwiner David J DJ Reading Turchioe Meghan M
Frontiers in digital health 20230106
Shared decision-making (SDM) empowers patients and care teams to determine the best treatment plan in alignment with the patient's preferences and goals. Decision aids are proven tools to support high quality SDM. Patients with atrial fibrillation (AF), the most common cardiac arrhythmia, struggle to identify optimal rhythm and symptom management strategies and could benefit from a decision aid. In this Brief Research Report, we describe the development and preliminary evaluation of an interacti ...[more]
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Project description:AimThe purpose of this study was to translate evidence from Cochrane Reviews into a format that can be used to facilitate shared decision making during the consultation, namely patient decision aids.MethodsA systematic development process (a) established a stakeholder committee; (b) developed a prototype according to the International Patient Decision Aid Standards; (c) applied the prototype to a Cochrane Review and used an interview-guided survey to evaluate acceptability/usability; (d) created 12 consult decision aids; and (e) used a Delphi process to reach consensus on considerations for creating a consult decision aid.ResultsThe 1-page prototype includes (a) a title specifying the decision; (b) information on the health condition, options, benefits/harms with probabilities; (c) an explicit values clarification exercise; and (d) questions to screen for decisional conflict. Hyperlinks provide additional information on definitions, probabilities presented graphically, and references. Fourteen Cochrane Consumer Network members and Cochrane Editorial Unit staff participated. Thirteen reported that it would help patient/clinician discussions and were willing to use and/or recommend it. Seven indicated the right amount of information, six not enough, and one too much. Changes to the prototype were more links to definitions, more white space, and details on GRADE evidence ratings. Creating 12 consult decision aids took about 4 h each. We identified ten considerations when selecting Cochrane Reviews for creating consult decision aids.ConclusionsUsing a systematic process, we developed a consult decision aid prototype to be populated with evidence from Cochrane Reviews. It was acceptable and easy to apply. Future studies will evaluate implementation of consult decision aids.
| S-EPMC5107194 | biostudies-literature
Project description:BackgroundPatients with atrial fibrillation (AF) must decide between warfarin and direct oral anticoagulants (DOACs), a decision involving important tradeoffs. Our objective was to understand whether physicians engage patients in informed decision making for anticoagulants.DesignWe performed an analysis of recorded conversations between physicians and anticoagulation-naïve patients in the Verilogue Point-of-Practice database. We assessed the presence of 7 elements of informed decision making, as well as a discussion of financial costs.ResultsOf 37 encounters with 21 physicians, 92% resulted in a DOAC prescription and 8% resulted in a warfarin prescription. Seventy percent met criteria for discussion of pros and cons, 70% for discussion of the alternatives, 43% presented the decision, 30% included an assessment of patient understanding, 22% included an explanation of the patient's role in decision making, 22% included an assessment of patient preferences, and 19% included a discussion of uncertainty. Two encounters (5%) included all 7 elements and 9 (24%) included none. Physicians discussed treatment costs with patients in 43% of encounters.LimitationsWe assessed informed decision making in a single encounter. Physicians and patients may have had other discussions that were not captured in our data.ConclusionsPhysicians often presented the alternatives but did not generally engage patients in informed decision making. The high rate of DOAC prescriptions is likely the result of physician preferences, as patient preferences were rarely assessed.ImplicationsStrategies to support physicians in engaging patients in informed decision making for anticoagulation are needed.HighlightsWhile physicians discussed the alternatives and presented pros and cons with patients, they rarely assessed patient preferences, explained the patient's role in decision making, or addressed uncertainty.The cost of treatment with DOACs versus warfarin was discussed by physicians in less than half of encounters, limiting patients' ability to make informed decisions for anticoagulation.Only 2 encounters (5%) fulfilled all 7 elements of informed decision making.
| S-EPMC9825626 | biostudies-literature
Project description:BackgroundShared decision-making (SDM) is an approach in which patients and clinicians act as partners in making medical decisions. Patients receive the information needed to decide and are encouraged to balance risks, benefits, and preferences. Informative materials are vital to SDM. Atrial fibrillation (AF) is the most common cardiac arrhythmia and responsible for 10% of ischemic strokes, however 1/3 of patients are not on appropriate anticoagulation. Decision sharing may facilitate treatment acceptance, improving outcomes.AimsTo develop a framework of the components needed to create novel SDM tools and to provide practical examples through a case-study of stroke prevention in AF.MethodsWe analyze the design values of a web-based SDM tool created to better inform AF patients about anticoagulation. The tool was developed in partnership with patient advocates, multi-disciplinary investigators, and private design firms. It was refined through iterative, recursive testing in patients with AF. Its effectiveness is being evaluated in a multisite clinical trial led by Stanford University and sponsored by the American Heart Association.FindingsThe main components considered when creating the Stanford AFib tool included: design and software; content identification; information delivery; inclusive communication, user engagement; patient feedback; clinician experience; and anticipation of implementation and dissemination. We also highlight the ethical principles underlying SDM; matters of diversity and inclusion, linguistic variety, accessibility, and health literacy. The Stanford AFib Guide patient tool is available at: https://afibguide.com and the clinician tool at https://afibguide.com/clinician.ConclusionAttention to a range of vital development and design factors can facilitate tool adoption and information acquisition by diverse cultural, educational, and socioeconomic subpopulations. With thoughtful design, digital tools may decrease decision regret and improve treatment outcomes across many decision-making situations in healthcare.
| S-EPMC9893868 | biostudies-literature
Project description:BACKGROUND:Care of patients with diabetes often occurs in the context of other chronic illness. Competing disease priorities and competing patient-physician priorities present challenges in the provision of care for the complex patient. Guideline implementation interventions to date do not acknowledge these intricacies of clinical practice. As a result, patients and providers are left overwhelmed and paralyzed by the sheer volume of recommendations and tasks. An individualized approach to the patient with diabetes and multiple comorbid conditions using shared decision-making (SDM) and goal setting has been advocated as a patient-centred approach that may facilitate prioritization of treatment options. Furthermore, incorporating interprofessional integration into practice may overcome barriers to implementation. However, these strategies have not been taken up extensively in clinical practice. OBJECTIVES:To systematically develop and test an interprofessional SDM and goal-setting toolkit for patients with diabetes and other chronic diseases, following the Knowledge to Action framework. METHODS:1. Feasibility study: Individual interviews with primary care physicians, nurses, dietitians, pharmacists, and patients with diabetes will be conducted, exploring their experiences with shared decision-making and priority-setting, including facilitators and barriers, the relevance of a decision aid and toolkit for priority-setting, and how best to integrate it into practice.2. Toolkit development: Based on this data, an evidence-based multi-component SDM toolkit will be developed. The toolkit will be reviewed by content experts (primary care, endocrinology, geriatricians, nurses, dietitians, pharmacists, patients) for accuracy and comprehensiveness.3. Heuristic evaluation: A human factors engineer will review the toolkit and identify, list and categorize usability issues by severity.4. Usability testing: This will be done using cognitive task analysis.5. Iterative refinement: Throughout the development process, the toolkit will be refined through several iterative cycles of feedback and redesign. DISCUSSION:Interprofessional shared decision-making regarding priority-setting with the use of a decision aid toolkit may help prioritize care of individuals with multiple comorbid conditions. Adhering to principles of user-centered design, we will develop and refine a toolkit to assess the feasibility of this approach.
| S-EPMC3937124 | biostudies-literature
Project description:PurposeShared decision-making (SDM) is a method for a patient and physician to cooperatively consider a diagnostic or therapeutic option, ultimately empowering the patient to make an informed decision. Atrial fibrillation (AF) ablation is a procedure that would benefit from SDM given the risk of serious adverse events, the high rate of arrhythmia recurrence, and alternative treatment options. Implementing a patient decision aid (PDA) may help facilitate AF ablation SDM by succinctly conveying important information to patients.MethodsPatients scheduled for initial AF catheter ablation were randomized to a virtual SDM visit utilizing a PDA, which covered procedural risks and benefits, or a virtual control visit with a tool outlining periprocedural processes. Preoperatively, patients completed a questionnaire assessing procedural risk and benefit knowledge, as well as perceived involvement with the decision-making process. Unpaired t-tests were used to compare groups.ResultsThe SDM group scored significantly better overall on knowledge-based questions compared to the control group (69% correct [n=34] vs 53% [n=32]; P=0.00013). In particular, the SDM group was significantly more likely to answer questions correctly about stroke risk (P=0.01), anticoagulation (P=0.01), and potential need for additional procedures (P=0.03 and P=0.03). Perceived involvement in the decision-making process was overall not improved with PDA use (4.7 vs 4.6 out of 5; P=0.72).ConclusionsThe addition of a PDA for AF ablation significantly improved procedural knowledge but did not impact patients' perceived involvement in the decision-making process compared to traditional preprocedural discussion alone.
| S-EPMC11262844 | biostudies-literature
Project description:AimsTo determine the extent of shared decision-making (SDM), during selection of oral anticoagulant (OAC) and rhythm control treatments, in patients with newly diagnosed atrial fibrillation (AF).Methods and resultsWe evaluated survey data from 1006 patients with new-onset AF enrolled at 56 US sites participating in the SATELLITE substudy of the Outcomes Registry for Better Informed Treatment of Atrial Fibrillation (ORBIT II). Patients completed surveys at enrolment and at 6-month follow-up. Patients were asked about who made their AF treatment decisions. Shared decision-making was classified as one that the patient felt was an autonomous decision or a shared decision with their healthcare provider (HCP). Approximately half of patients reported that their OAC treatment decisions were made entirely by their HCP. Compared with those reporting no SDM, patients reporting SDM for OAC were more often female (47.2% vs. 38.4%), while patients reporting SDM for rhythm control were more often male (62.2% vs. 57.6%). The most important factors cited by patients during decision-making for OAC were reducing stroke and bleeding risk, and their HCP's recommendations. After adjustment, patients with self-reported understanding of OAC, and rhythm control options, had higher odds of having participated in SDM [odds ratio (OR) 2.54, confidence interval (CI): 1.75-3.68 and OR 2.36, CI: 1.50-3.71, both P ≤ 0.001, respectively].ConclusionShared decision-making is not widely implemented in contemporary AF practice. Patient understanding about available therapeutic options is associated with a more than a two-fold higher likelihood of SDM, and may be a potential target for future interventions.
| S-EPMC7778449 | biostudies-literature
Project description:ObjectivePatient values and preferences are an important component to decision making when tradeoffs exist that impact quality of life, such as tradeoffs between stroke prevention and hemorrhage in patients with atrial fibrillation (AF) contemplating anticoagulant therapy. Our objective is to describe the development of an Atrial Fibrillation Guideline Support Tool (AFGuST) to assist the process of integrating patients' preferences into this decision.Materials and methodsCHA2DS2VASc and HAS-BLED were used to calculate risks for stroke and hemorrhage. We developed a Markov decision analytic model as a computational engine to integrate patient-specific risk for stroke and hemorrhage and individual patient values for relevant outcomes in decisions about anticoagulant therapy.ResultsIndividual patient preferences for health-related outcomes may have greater or lesser impact on the choice of optimal antithrombotic therapy, depending upon the balance of patient-specific risks for ischemic stroke and major bleeding. These factors have been incorporated into patient-tailored booklets which, along with an informational video, were developed through an iterative process with clinicians and patient focus groups.Key limitationsCurrent risk prediction models for hemorrhage, such as the HAS-BLED, used in the AFGuST, do not incorporate all potentially significant risk factors. Novel oral anticoagulant agents recently approved for use in the United States, Canada, and Europe have not been included in the AFGuST. Rather, warfarin has been used as a conservative proxy for all oral anticoagulant therapy.ConclusionsWe present a proof of concept that a patient-tailored decision-support tool could bridge the gap between guidelines and practice by incorporating individual patient's stroke and bleeding risks and their values for major bleeding events and stroke to facilitate a shared decision making process. If effective, the AFGuST could be used as an adjunct to published guidelines to enhance patient-centered conversations about the anticoagulation management.
| S-EPMC4708062 | biostudies-literature
Project description:IntroductionMany parents who choose hypospadias repair for their sons experience decisional conflict (DC) and decisional regret (DR). We previously found that parental decision-making about hypospadias surgery is a complex process characterized by cyclic information-seeking to alleviate anxiety and confusion.ObjectiveThe objective of this study was to engage parents of hypospadias patients and pediatric providers in the co-design of a decision aid (DA) prototype to facilitate shared decision-making about hypospadias surgery and address DC and DR.MethodsFrom August 2018 to January 2019, we conducted three co-design workshops with parents of hypospadias patients, pediatric urology and general pediatric providers to discuss their recommendations for a DA prototype. Activities were audio recorded and professionally transcribed. Transcripts and worksheets were analyzed by six coders using qualitative analysis to identify key aspects of a hypospadias DA desired by stakeholders. We conducted a collaborative design and prototyping session to establish key features and requirements, created a content map visualizing this work, and then developed a DA prototype.ResultsParent participants included 6 mothers and 4 fathers: 8 Caucasian, 2 African-American; median age 31 years. Providers included pediatric urology (n = 7) and general pediatric providers (n = 10): median age 47.5 years, 83.3% Caucasian, 58.3% male, 58.3% MD's and 41.7% nurse practitioners. Participants created user-friendly, interactive DA prototypes with "24/7" availability that had three key functions: 1) provide accurate, customizable, educational content, 2) connect parents with each other, and 3) engage them in a decision-making activity. The prototype consisted of five modules (Extended Summary Figure). "Hypospadias Basics" includes epidemiology and a hypospadias severity scale. "Surgery Basics" includes goals, illustrated steps, and pros/cons of surgery. "Testimonials" includes videos of parents and adolescents discussing their experiences. "Help me Decide" includes a decisional conflict scale and a decision-making activity (i.e. values clarification method). "Frequently Asked Questions" covers general hypospadias information, perioperative expectations and a review of postoperative care.DiscussionTo our knowledge, this is the first DA prototype developed for a pediatric urology condition using a human-centered design approach to engage many key stakeholders in the development process. One limitation of this study is the small population sampled, which limits generalizability and means that our findings may not reflect the views of all parents or pediatric providers involved in hypospadias decision-making.ConclusionsWe created a parent-centered hypospadias DA prototype that provides decision support in an online, interactive format. Future directions include further testing with usability experts, providers and parents.
| S-EPMC7686073 | biostudies-literature
Project description:AimsAs a first step in developing a decision aid to support shared decision-making (SDM) for patients with atrial fibrillation (AF) to evaluate treatment options for rhythm and symptom control, we aimed to measure decision quality and describe decision-making processes among patients and clinicians involved in decision-making around catheter ablation for AF.Methods and resultsWe conducted a cross-sectional, mixed-methods study guided by an SDM model outlining decision antecedents, processes, and outcomes. Patients and clinicians completed semi-structured interviews about decision-making around ablation, feelings of decision conflict and regret, and preferences for the content, delivery, and format of a hypothetical decision aid for ablation. Patients also completed surveys about AF symptoms and aspects of decision quality. Fifteen patients (mean age 71.1 ± 8.6 years; 27% female) and five clinicians were recruited. For most patients, decisional conflict and regret were low, but they also reported low levels of information and agency in the decision-making process. Most clinicians report routinely providing patients with information and encouraging engagement during consultations. Patients reported preferences for an interactive, web-based decision aid that clearly presents evidence regarding outcomes using data, visualizations, videos, and personalized risk assessments, and is available in multiple languages.ConclusionDisconnects between clinician efforts to provide information and bolster agency and patient experiences of decision-making suggest decision aids may be needed to improve decision quality in practice. Reported experiences with current decision-making practices and preferences for decision aid content, format, and delivery can support the user-centred design and development of a decision aid.
| S-EPMC10111971 | biostudies-literature
Project description:Background Oral anticoagulation reduces stroke and disability in atrial fibrillation (AF) but is underused. We evaluated the effects of a novel patient-clinician shared decision-making (SDM) tool in reducing oral anticoagulation patient's decisional conflict as compared with usual care. Methods and Results We designed and evaluated a new digital decision aid in a multicenter, randomized, comparative effectiveness trial, ENHANCE-AF (Engaging Patients to Help Achieve Increased Patient Choice and Engagement for AF Stroke Prevention). The digital AF shared decision-making toolkit was developed using patient-centered design with clear health communication principles (eg, meaningful images, limited text). Available in English and Spanish, the toolkit included the following: (1) a brief animated video; (2) interactive questions with answers; (3) a quiz to check on understanding; (4) a worksheet to be used by the patient during the encounter; and (5) an online guide for clinicians. The study population included English or Spanish speakers with nonvalvular AF and a CHA2DS2-VASc stroke score ≥1 for men or ≥2 for women. Participants were randomized in a 1:1 ratio to either usual care or the shared decision-making toolkit. The primary end point was the validated 16-item Decision Conflict Scale at 1 month. Secondary outcomes included Decision Conflict Scale at 6 months and the 10-item Decision Regret Scale at 1 and 6 months as well as a weighted average of Mann-Whitney U-statistics for both the Decision Conflict Scale and the Decision Regret Scale. A total of 1001 participants were enrolled and followed at 5 different sites in the United States between December 18, 2019, and August 17, 2022. The mean patient age was 69±10 years (40% women, 16.9% Black, 4.5% Hispanic, 3.6% Asian), and 50% of participants had CHA2DS2-VASc scores ≥3 (men) or ≥4 (women). The primary end point at 1 month showed a clinically meaningful reduction in decisional conflict: a 7-point difference in median scores between the 2 arms (16.4 versus 9.4; Mann-Whitney U-statistics=0.550; P=0.007). For the secondary end point of 1-month Decision Regret Scale, the difference in median scores between arms was 5 points in the direction of less decisional regret (P=0.078). The treatment effects lessened over time: at 6 months the difference in medians was 4.7 points for Decision Conflict Scale (P=0.060) and 0 points for Decision Regret Scale (P=0.35). Conclusions Implementation of a novel shared decision-making toolkit (afibguide.com; afibguide.com/clinician) achieved significantly lower decisional conflict compared with usual care in patients with AF. Registration URL: https://www.clinicaltrials.gov; Unique identifier: NCT04096781.
| S-EPMC9973612 | biostudies-literature