Core Outcome Measure for Life Participation in Patients with Chronic Kidney Disease: Standardized Outcomes in Nephrology Workshops Report.
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INTRODUCTION: Life participation is of critical importance to patients with chronic kidney disease (CKD) not requiring kidney replacement therapy (KRT), their caregivers and health professionals. However, life participation is rarely and inconsistently assessed in trials in CKD. The aim was to establish a core outcome measure for life participation in patients with CKD not requiring KRT. METHODS: An online (English language) and an in-person (Spanish language) consensus workshop, one-hour in length, were held in March and April 2024 respectively, were held to discuss and establish a meaningful, relevant and feasible core patient-reported outcome measure for life participation for trials in CKD. Transcripts were analyzed thematically. RESULTS: Workshops included 130 participants, including 74 patients and caregivers, and 56 health professionals, from 18 countries. Four themes were identified. Enabling interpretation within individual contexts and circumstances included considering relevance to patients' own priorities, capturing key life activities common to all patients, reflecting the goal of leading a fulfilling life, acknowledging the variability and multiplicity of domains, and facilitating linguistic and cultural translation. Having broad clinical relevance across CKD meant covering the spectrum of CKD stages and diagnoses, and allowing comparison across treatment stages. Supporting widespread implementation entailed minimizing burden of administration and completion, establishing psychometric robustness, seeking endorsement to legitimize the measure, and ensuring accessibility and acceptability across different settings. Highlighting opportunities to address life participation captured promoting person-centered clinical care and generating ideas for novel interventions to improve life participation. CONCLUSION: A core outcome measure for life participation in patients with CKD should enable a patient to interpret life participation in their own context, have applicability across the CKD population, and be psychometrically robust and feasible to implement. Measuring life participation in a consistent and meaningful way across trials can better support patient-centered decision making and outcomes.
