Recovering from Cystectomy: Patient Perspectives

• DOI: 10.3233/blc-180202
• Publication Date: 2019-02-01T16:56:35Z
• Authors: Carmit K. McMullen; Marilyn L. Kwan; Janice C. Colwell; Julie R. Munneke; James V. Davis; Alison Firemark; Neon Brooks; Marcia Grant; Scott M. Gilbert; Andrea Altschuler
• Keywords: Urinary diversion

Background: Bladder cancer patients who undergo cystectomy and urinary diversion face functional quality-of-life challenges.Little is known about these patients' experiences during decision-making, surgery, recovery, or how they vary by treatment setting.Objective: To learn with choice, surgical care, recovery across health settings.Understanding patient essential to closing care gaps developing patient-reported measures.Methods: We conducted focus groups family caregivers at a large comprehensive system (N = 32 patients) an NCI-designated center 25 5 caregivers).Using standard qualitative methods, we identified themes that are not well-represented in existing research.Results: Across both systems, described variable decision-making their diversion.Some felt overwhelmed information; others poorly informed.Many found self-care equipment challenging; many knew little what expect regarding chemotherapy, transitioning home.At times, personnel could help manage ostomies catheterization equipment.Our study also contributes grounded theoretical framework for describing meaningful domains of experience diversion.We common trajectory includes surgery post-operative mastery self-care, reintegration.Conclusions: Patients radical report wide variety captured quantitative measures.These findings demonstrate benefit from additional support.We offer measure patient-centered future research.