Development and acceptability testing of a patient decision aid for individuals with localized renal masses considering surgical removal with partial or radical nephrectomy

Abstract

IntroductionPatient decision aids are structured clinical tools that facilitate shared decision-making. In urology, the decision between partial and radical nephrectomy for a renal mass can be difficult. We sought to develop and evaluate a decision aid for patients with a localized renal mass considering surgery. This paper describes the development process and acceptability testing of our patient decision aid. Material and methodsA decision aid was systematically created using the International Patient Decision Aids Standards. Review of the literature identified evidence regarding patient-important outcomes of partial and radical nephrectomy. A mixed methods survey was designed to assess acceptability of the decision aid. Kidney cancer survivors, patient advocates, methodological experts, and urologists were recruited to evaluate the decision aid. The primary outcome was the acceptability of the decision aid reported by survey responders. ResultsAn evidence-based decision aid was created. Included benefits were overall survival, cancer-free survival, and length of hospital stay. Included harms were postoperative bleeding, urine leak, stage 3 renal failure, renal replacement therapy, and flank bulge. The decision aid met the International Patient Decision Aids Standards defining (6 of 6), certification (6 of 6), and quality criteria (21 of 23). Results of acceptability testing were highly favorable. Responders (n = 22) reported the decision aid had acceptable language (91%), an appropriate length (82%), and presented balanced options (91%). Nine of 11 urologists (82%) reported intended use with future patients. ConclusionsA novel, evidence-based decision aid was created for patients with renal masses considering surgery. The decision aid is available at https://decisionaid.ohri.ca/AZsumm.php?ID=1913. A separate decision aid addressing the management of small renal masses is currently under development.