American journal of kidney diseases : the official journal of the National Kidney Foundation
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Survival and quality of life for patients on hemodialysis therapy remain poor despite substantial research efforts. Existing trials often report surrogate outcomes that may not be relevant to patients and clinicians. The aim of this project was to generate a consensus-based prioritized list of core outcomes for trials in hemodialysis. ⋯ Patients/caregivers gave higher priority to lifestyle-related outcomes than health professionals. The prioritized outcomes for both groups were vascular access problems, dialysis adequacy, fatigue, cardiovascular disease, and mortality. This process will inform a core outcome set that in turn will improve the relevance, efficiency, and comparability of trial evidence to facilitate treatment decisions.
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Focal segmental glomerulosclerosis (FSGS) is a kidney disease that affects patients' functioning and well-being. This study aimed to develop patient-reported outcome questionnaires to measure patient experiences related to FSGS. ⋯ The FSGS Symptom Diary and FSGS Symptom Impact Questionnaire are new FSGS-specific patient-reported outcomes measures designed to support a comprehensive assessment of symptoms and symptom impact in adults with FSGS. Future research is needed to evaluate their quantitative measurement properties.