Glyn Elwyn

Rationale & Objective: People with advanced chronic kidney disease (CKD) often face barriers to communication and self-advocacy, which may be mitigated by the practice of collaborative agenda-setting. We developed Chronic Kidney Disease Talk Topics (CKD Talk Topics), a structured agenda-setting intervention designed to help people with CKD and their care partners identify and communicate their discussion priorities during nephrology visits. Study Design: Following a literature review, we used a participatory design approach involving semi-structured interviews with patients (with care partners who attended), and clinicians to develop CKD Talk Topics Setting & Participants: Interviews occurred in a nephrology clinic in rural northern New England with patients that had advanced CKD (stages 4 and 5), some attending care partners, and clinicians. Analytical Approach: We used Framework Analysis to summarize suggested content, format, and structure, and participatory Practical Thematic Analysis to explore communication needs and expectations. Results: We interviewed 12 patients (with 4 accompanying care partners), and 8 clinicians. Overall, participants viewed CKD Talk Topics as a helpful tool. Patients emphasized simplicity, larger visual elements, CKD-specific content, and flexibility in usage. Clinicians noted the intervention’s potential for patient-centered, efficient visits. The final tool features six plain-language topics: “Your Body,” “Your Feelings,” “What Matters to You,” “Taking Care of Yourself,” “What Happens Next,” and “Everyday Needs.” Limitations: Our findings may reflect the context of our clinic, which is in Northern New England with limited racial and ethnic diversity. Conclusions: The co-design process resulted in a simplified CKD Talk Topics intervention. These changes supported our goal: a patient-centered, structured agenda-setting tool to help people with advanced CKD and their care partners communicate priorities during nephrology visits. Feasibility testing is planned.

Background: Endometriosis treatment requires women to navigate complex, preference‐sensitive decisions. Patient Decision Aids (PtDAs) help patients make value‐aligned choices. However, the scope and quality of digital PtDAs for endometriosis, and the cap acity of conversational AI platforms to act as PtDAs, remain unclear. Objectives: Systematically map digital PtDAs for women of reproductive age with endometriosis, describe their content, development, and evaluation, and assess quality and replicability. Search Strategy: Electronic databases, Google Scholar, grey literature, and web searches were conducted from inception to July 2025. Selection Criteria: We included digital PtDAs for women aged 18–49 with a clinical diagnosis of endometriosis that met the minimum criteria established to qualify as a PtDA. Additionally, we developed a prompt to generate five PtDAs using conversational AI platforms, mirroring patient or clinician decision‐support queries. Data Collection and Analysis: Two independent reviewers extracted data per Joanna Briggs Institute (JBI) scoping reviews methodology. IPDAS criteria (requirements for PtDAs) and TIDieR items (intervention reporting) were applied; data were summarised descriptively and qualitatively. Results: Ten PtDAs were included (five expert‐developed; five AI‐generated). Overall, most addressed pharmacological and surgical options, while AI‐generated PtDAs included more complementary therapies. All described the health condition, decision, and options with balanced pros/cons, but most failed on important IPDAS criteria for high‐quality PtDAs. Most expert‐developed PtDAs also lacked transparent development reporting and had not been formally evaluated. Conclusions: Few digital PtDAs for endometriosis were identified; most showed limited adherence to IPDAS criteria, poor reporting transparency, and absent formal evaluation.

Introduction: Shared decision-making (SDM) is a process whereby patients are supported to reach decisions about their healthcare in collaboration with healthcare professionals. Despite decades of SDM research, the impact of using SDM interventions (eg, patient decision aids, decision coaching, question prompt lists, training and feedback or service changes) on clinical and health service outcomes remains uncertain. This is partly because synthesis of the existing literature is hindered by substantial heterogeneity in the evaluation of interventions to facilitate SDM. A core outcome set (COS) is an agreed standardised set of outcomes that should be measured and reported in all effectiveness studies. The aim of this study is to develop a generic COS for evaluating the impact of SDM interventions (COS-SDMi). Methods and analysis: This study will follow Core Outcome Measures in Effectiveness Trials (COMET) handbook and Core Outcome Set-STAndards for Development (COS-STAD) and reporting (COS-STAR). Relevant key interest holder groups include health professionals, patients, academic experts in SDM, representatives from policy/guideline development, journal editors and research funders. The scope of the COS was agreed through consultation with experts from key interest holder groups. The study will consist of three steps. In Step 1, we will produce a ‘long’ (comprehensive) list of candidate outcome domains using multiple data sources. Relevant outcomes will be extracted from a COS developed in the context of rheumatology, a synthesis of existing reviews of SDM interventions and qualitative interviews with a minimum of 20 representatives of key interest holder groups internationally. In Step 2, we will agree on a shorter list of outcome domains using a Delphi survey. A sequential two-round international online Delphi survey with two panels (professionals, public/patients) will be used to agree on the outcomes, seeking responses from a minimum of 150 international participants representing key interest groups. In Step 3, we will reach consensus on the final COS using consensus meetings. Consensus meetings with key interest holder group participants internationally will be held, applying modified nominal group techniques. The total project period will be from June 2025 until September 2026. Ethics and dissemination: Research ethics approval has been granted in the UK for undertaking qualitative interviews (University of Exeter Faculty Ethics Committee, ref: 8207624) and the Delphi survey and consensus meeting activities (University of Bristol Faculty Ethics Committee, ref: 7741). Written informed consent will be obtained digitally from all participants in the qualitative interviews, the Delphi surveys and the consensus meetings. The final COS will be disseminated through presentations at international conferences, briefing notes to key organisations and publication in a peer-reviewed journal. Further dissemination is planned through our patient/public advisory group, professional networks and executive group channels, as well as publications to patient groups, funders, journal editors, international regulatory bodies and health technology assessment boards. Study registration: COMET Database ( www.comet-initiative.org/Studies/Details/3586 ).

Background: Childhood vaccination rates are declining, and more parents are becoming hesitant about vaccinating their children. Higher levels of vaccine hesitancy occur among parents with lower levels of educational attainment, who are also likely to have lower levels of health literacy. Objective: We aimed to develop a web-based decision aid, considered a shared decision-making (SDM) approach, to inform and support Dutch parents in their decision-making about routine childhood vaccination, prioritizing the needs of hesitant parents and those with lower health literacy. We adapted the traditional SDM approach by balancing the ethical tension between the collective responsibility for public health and individual autonomy in vaccination decisions and focused the decision aid on evidence-guided (rather than preference-sensitive) decision-making. Methods: The development process involved content development and web application development. We adopted a user-centered approach by actively engaging stakeholders, including parents, health professionals, and other experts. Participating stakeholders were purposefully selected and engaged through different routes to include a variety of perspectives. The general concept of vaccination as an evidence-based intervention to promote health at the individual and societal levels remained central throughout the development process. Results: We conducted this project in the Netherlands from early 2023 through the end of 2024. We identified parental needs through interviews with 18 parents and a literature assessment. Parental needs, evidence-based information about vaccination, and how to communicate about vaccination informed the initial content of the decision aid. After feedback from the advisory group and subject matter experts, we refined the draft. At this stage, the textual content was inserted into a prototype web application. We subjected this prototype to 3 iterative cycles of testing, review, and adaptation. We analyzed and discussed the issues identified during testing and recommended adaptations to improve the design, structure, and content of the decision aid. These adaptations were subsequently discussed with the advisory group before being implemented. In response to the issues raised, we shortened the text blocks, replaced written information with visual elements, and restructured the layout to improve navigation. The final prototype consisted of the modules “Information” and “Decision Support.” Conclusions: We co-developed a parent-facing decision aid (PDA) for childhood vaccination tailored to the needs of hesitant parents and those with lower health literacy. Through this intervention, we adapted an SDM approach to evidence-guided decision-making, creating space for individual concerns and deliberations without compromising evidence-based recommendations. Future research should focus on the timing of the intervention and the optimal window for offering the PDA in relation to the parents’ decision-making process.

BACKGROUND Validated engagement quality instruments provide a practical starting point for evaluating engagement without imposing strict compliance metrics. Existing evaluations are predominantly qualitative and descriptive, limiting cross-study comparability and complicating efforts to assess engagement. Emerging efforts, such as the National Academy of Medicine’s work on community engagement measurement and the development of validated instruments such as the QPCOR, highlight a growing consensus that engagement should be evaluated not only in terms of participation or structure, but also by influence, accountability, and relational quality. OBJECTIVE To validate the Quality of Patient-Centered Outcomes Research Instrument (QPCOR). METHODS Baseline, 3-month, and 6-month follow-up data from a national prospective cohort study of 330 U.S. patients and community partners. The 10-item QPCOR was validated across several metrics: descriptive statistics, item response characteristics, internal consistency, test-retest reliability, and convergent validity RESULTS The QPCOR items (1) measured related aspects of researcher partnership efforts (correlations ranged from 0.485 to 0.712), (2) differentiated between levels of perceived researcher effort (all discrimination values >2.550), (3) demonstrated internal consistency (Cronbach’s alpha = 0.94) and test-retest reliability (intraclass correlation coefficient values ranged from 0.418 to 0.555), and (4) exhibited convergent validity with other validated scales, including the Brief Research Engagement Survey Tool (r = 0.75, p<0.001), the Subjective Numeracy Scale (r = 0.48, p<0.001), and the Trust in Medical Researchers Scale (r = 0.48, p<0.001). CONCLUSIONS The QPCOR provides a reliable, psychometrically validated instrument for measuring the quality of patient-centered outcomes research partnerships. This instrument advances the science of engagement through its inclusion as a standardized measure for patient-centered outcomes research. CLINICALTRIAL N/A

Importance Shared decision-making (SDM) improves patient adherence and may reduce costs, yet its adoption remains limited. A brief, valid, and practical measure of clinicians’ willingness to adopt SDM is needed to support implementation efforts and research. Objective To refine and improve the incorpoRATE measure of clinician willingness to incorporate shared decision-making. Design, Setting, and Participants Cognitive interview study conducted via video conference with physicians, nurse practitioners, and physician assistants working in primary care in rural New Hampshire, recruited through the Northern New England Practice and Community-Based Research Network (NNE CO-OP), October to December 2024. Main Outcomes and Measures Item-level feedback on clarity, interpretability, and social desirability of measure items; participant-rated willingness scores (0–10 scale) for each item. Results Cognitive interviews across two rounds with 16 health professionals (9 physicians, 6 nurse practitioners, 1 physician assistant) confirmed that further modifications were required to the measure. Changes reduced potential social desirability introduced by certain word choices and modified the question stems and response scale. Conclusions and Relevance Refinements improved incorpoRATE's clarity and applicability, with slightly higher and similar-more variable mean willingness scores (8.33, SD = 1.3) than earlier versions. A further version of the measure is now available for clinical validation.

Rationale & Objective: People who live in rural areas with advanced chronic kidney disease (CKD) face well-documented structural barriers to receiving care, yet little is known about how they experience their illness or perceive interactions with their healthcare teams. We aimed to characterize the lived experiences and care perceptions of adults living in rural areas with advanced, pre-dialysis CKD. Study Design: We conducted semi-structured qualitative interviews with patients and care partners. Setting & Participants: We recruited patients with advanced CKD (stages 4–5, not on dialysis) and their care partners from a single hospital-based nephrology clinic in northern New England serving a predominantly rural population. Analytical Approach: We analyzed interview transcripts using participatory Practical Thematic Analysis (PTA), an inductive, stakeholder-engaged approach to qualitative analysis. Results: We interviewed 12 patients and 4 care partners. Four themes were identified: (1) logistical challenges of rural CKD care were pervasive but frequently normalized as an expected feature of rural life; (2) disease progression and future treatments were sources of uncertainty and concern, with expectations about dialysis often shaped by peer accounts rather than clinical discussion; (3) clinical conversations centered on laboratory results and medications, leaving emotional concerns and psychologic challenges unaddressed; and (4) physical symptoms and lifestyle changes were common but frequently attributed to comorbid conditions rather than to CKD. Limitations: Recruitment from a single clinic with a small, racially homogeneous sample limits transferability. While in-person recruitment may have excluded patients with greater transportation barriers, those who attended represent a population navigating substantial access challenges to receive care. Conclusions: Adults living in rural areas with advanced CKD experience logistical, emotional, and informational challenges broadly consistent with those reported in non-rural CKD populations. Patients normalized geographic barriers and did not consistently identify rurality as a source of disadvantage, even as structural barriers persisted. These findings support the development of structured communication approaches in nephrology care that invite discussion of disease trajectory, daily life impacts, and emotional concerns.

Background: CollaboRATE is a 3-item instrument that measures patients’ perceived shared decision-making. Compared to other shared decision-making measures, it demonstrates strong content validity and is brief enough for use in busy clinical environments. However, no Korean version is currently available. Objectives: This study aimed to translate CollaboRATE into Korean and evaluate its psychometric properties among multimorbid patients with hypertension. Methods: The original version of CollaboRATE was translated into Korean using a forward- and back-translation process. Cognitive interviews were conducted with 6 patients. A cross-sectional survey was then conducted with 503 patients to evaluate the psychometric properties. Internal consistency was assessed using Cronbach’s alpha, and structural validity was examined with exploratory and confirmatory factor analyses. Construct validity was evaluated with hypothesis testing. Results: Based on the cognitive interviews, several phrases were revised to improve item clarity. Cronbach’s alpha for the Korean version of CollaboRATE was 0.93. Factor analysis suggested a one-factor structure. As hypothesized, CollaboRATE scores were positively correlated with scores of the Shared Decision Making Q-9 ( r = 0.67), the Patient Activation Measure ( r = 0.17), and the Partners in Health Scale measuring self-care ( r = 0.36), supporting its construct validity. Conclusion: The Korean version of CollaboRATE is a reliable and valid instrument for assessing patients’ perceptions of shared decision-making.