Health-related quality of life (HR-QOL) measures in renal cell carcinoma (RCC): Patient-reported relevance of items of the FKSI-19, EORTC QLQ-C30, and EQ-5D.

Abstract

4540 Background: Given the need to balance both quantity and quality of life among patients with advanced cancer, developing a robust, relevant, and consensus-driven patient-focused measurement strategy is a necessity. Our study expands upon previous findings (Bergerot et al., The Oncologist 2023) in evaluating the perceived relevance of questions on the FKSI-19, EORTC QLQ-C30, and EQ-5D among patients with RCC. Methods: Eligible patients were diagnosed with RCC and asked to evaluate the relevance of each question of the FKSI-19, EORTC QLQ-C30, and EQ-5D (items rated as relevant vs non-relevant). Patients also responded to 2 open-ended questions regarding topics not covered by these measures and their perception of wearable technologies. Questions identified as meaningful required ≥66% “relevant” ratings. Descriptive statistics were collated, and open-ended questions were analyzed by 2 independent reviewers (CB, PB). Results: 116 patients were recruited from Brazil and the US. Most (69%) were male with a median age of 64 (32-88) years. 83% were diagnosed with advanced disease, and 75% received immunotherapy and/or targeted therapy as primary treatment. Few items across surveys were identified as meaningful including 8/19 FKSI-19 questions (lack of energy, fatigue, appetite, sleeping, worry, able to work, enjoyment and quality of life), 3/30 EORTC QLQ-C30 questions (tired, overall health and quality of life), and 0/5 EQ-5D questions. Patients suggested items pertaining to treatment side effects, emotional symptoms, physical function, social/family support, and financial distress should be included. Notably, 58% of patients were open to using wearable devices to assess HRQOL. Conclusions: Our multi-institutional international study confirms findings from our single-institution pilot data suggesting that HRQOL measures for RCC require substantial refinement. These data will inform development of a novel-RCC specific HRQOL tool in a joint effort between experts and patients.