Objective: 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.
Methods: 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.
Results: 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).
Conclusions: The web-based PtDA was developed and adapted to address unmet needs and found to be acceptable and usable by patients and HCPs.
Practice implications: The use of this tool could contribute to high quality, patient-centered and appropriate care for metastatic clear cell RCC patients in the Netherlands.
Keywords: Decision aid; Metastatic clear-cell renal cell carcinoma; Shared decision-making.
Copyright © 2025 The Authors. Published by Elsevier B.V. All rights reserved.