Improving value of care for renal cell carcinoma patients; development of a decision aid for metastatic clear-cell renal cell carcinoma.

Abstract

Patient decision aids (PtDAs) can support shared decision-making (SDM) by providing information about options, pros and cons and eliciting personal preferences. The aim of this study was to develop and test the acceptability and usability of a PtDA for patients with metastatic clear-cell renal cell carcinoma (RCC), the most common type of metastatic kidney cancer. User-centered mixed methods design. Co-creation process with stakeholders guided by the International Patient Decision Aids Standards (IPDAS) criteria, consisting of three main elements: (a) a needs assessment; (b) acceptability and usability testing; and (c) compatibility assessment with IPDAS criteria. Thirteen RCC patients and 29 healthcare professionals (HCP) participated in this study. Co-creation sessions were held with nine HCPs and a patient representative. Needs assessment (a) showed that patients lacked real treatment choices and wanted information on all treatment options, including life expectancy, side effects, psychological, and lifestyle advice. HCPs expect a PtDA to improve information delivery and patient engagement. A three-component PtDA was developed and tested (b), with positive feedback from both patients and professionals. The tool meets all 12 IPDAS criteria (c). The web-based PtDA was developed and adapted to address unmet needs and found to be acceptable and usable by patients and HCPs. The use of this tool could contribute to high quality, patient-centered and appropriate care for metastatic clear cell RCC patients in the Netherlands.