Abstract
Patient involvement in research can help to ensure that the evidence generated aligns with their needs and priorities. In the Establishing Meaningful Patient-Centered Outcomes With Relevance for Patients with Polycystic Kidney Disease (EMPOWER PKD) project we aimed to identify patient-important outcomes and discuss the impact of PKD on patients. Nine focus groups were held with adult patients with PKD, caregivers, and clinical or research experts in PKD. We used a nominal, multi-vote technique to rank patient-important outcomes to be prioritized by future PKD research. We conducted a thematic analysis of verbatim transcriptions to identify themes regarding the impact of PKD on their daily lives. Other focus group topics included insurability and patient engagement. Ninety patients and/or caregivers and eight clinicians and/or researchers participated in the focus groups. Nine focus groups yielded 35 outcomes important to patients which were grouped into six categories, ranked in order of importance: kidney health, comorbidities, lifestyle, psychological impact, family and awareness, and mortality. Regarding the impact of PKD on the patient's daily lives, we identified 5 themes, listed in order of importance: psychological impact, effect on daily living, issues affecting decision-making, healthcare-related issues, and PKD-specific testing dilemmas. This study of stakeholder engagement in patients with PKD revealed important priorities and values that should be considered for future research and when caring for patients with PKD. Future research should focus on kidney health and managing comorbidities in patients with PKD. This will help to bridge the knowledge gap and develop meaningful comparative effectiveness research (CER) in PKD.
Published Version
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