Patients' Perceptions Regarding the Relevance of Items Contained in the Functional Assessment of Cancer Therapy Kidney Symptom Index-19

Cristiane Decat Bergerot, Jasnoor Malhotra, Paulo Bergerot, Errol J. Philip, Daniela V. Castro, Jo Ann Hsu, Augusto Cesar De Andrade Mota, Andressa Cardoso De Azeredo, João Nunes De Matos Neto, Thomas Hutson, Viktor Grünwald, Axel Bex, Sarah P. Psutka, Brian Rini, Elizabeth R. Plimack, Viraj Master, Laurence Albiges, Toni K. Choueiri, Sumanta Pal, Thomas Powles

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

Abstract

Background: There is a lack of consensus regarding the optimal method of assessing health-related quality of life (HR-QOL) among patients with metastatic renal cell carcinoma (mRCC). This study explored the perceived relevance of items that make up the Functional Assessment of Cancer Therapy Kidney Symptom Index-19 (FKSI-19), as judged by patients with mRCC. Methods: This was a multinational cross-sectional survey. Eligible patients responded to a questionnaire composed of 18 items that assessed the perceived relevance of each item in the FKSI-19 questionnaire. Open-ended questions assessed additional issues deemed relevant by patients. Responses were grouped as relevant (scores 2-5) or nonrelevant (score 1). Descriptive statistics were collated, and open-ended questions were analyzed and categorized into descriptive categories. Spearman correlation statistics were used to test the association between relevance and clinical characteristics. Results: A total of 151 patients were included (gender: 78.1 M, 21.9F; median age: 64; treatment: 38.4 immunotherapy, 29.8 targeted therapy, 13.9 immuno-TKI combination therapy) in the study. The most relevant questions evaluated fatigue (77.5), lack of energy (72.2), and worry that their condition will get worse (71.5). Most patients rated blood in urine (15.2), fevers (16.6), and lack of appetite (23.2) as least relevant. Qualitative analysis of open-ended questions revealed several themes, including emotional and physical symptoms, ability to live independently, effectiveness of treatment, family, spirituality, and financial toxicity. Conclusion: There is a need to refine widely used HR-QOL measures that are employed among patients diagnosed with mRCC treated with contemporary therapies. Guidance was provided for the inclusion of more relevant items to patients' cancer journey.

Original languageEnglish
Pages (from-to)494-500
Number of pages7
JournalOncologist
Volume28
Issue number6
DOIs
StatePublished - Jun 2023

Keywords

  • Functional Assessment of Cancer Therapy Kidney Symptom Index-19
  • health care survey
  • health-related quality of life
  • patient-reported outcomes
  • renal cell carcinoma

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