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. 2019 Jan 31;5(1):51-61.
doi: 10.3233/BLC-180202.

Recovering from Cystectomy: Patient Perspectives

Carmit K McMullen  1 , Marilyn L Kwan  2 , Janice C Colwell  3 , Julie R Munneke  2 , James V Davis  1 , Alison Firemark  1 , Neon Brooks  1 , Marcia Grant  4 , Scott M Gilbert  5 , Andrea Altschuler  2
Affiliations

Recovering from Cystectomy: Patient Perspectives

Carmit K McMullen et al. Bladder Cancer. .

Abstract

Background: Bladder cancer patients who undergo cystectomy and urinary diversion face functional and quality-of-life challenges. Little is known about these patients' experiences during decision-making, surgery, and recovery, or how they vary by treatment setting.

Objective: To learn about patients' experiences with treatment choice, surgical care, and recovery across health settings. Understanding patient experiences is essential to closing care gaps and developing patient-reported measures.

Methods: We conducted focus groups with cystectomy patients and family caregivers at a large comprehensive health care system (N = 32 patients) and an NCI-designated comprehensive cancer center (N = 25 patients and 5 caregivers). Using standard qualitative methods, we identified themes that are not well-represented in existing research.

Results: Across both systems, patients described variable experiences in decision-making about their cystectomy and urinary diversion. Some felt overwhelmed by information; others felt poorly informed. Many found self-care equipment challenging; many felt they knew little about what to expect regarding chemotherapy, recovery, and transitioning home. At times, health care personnel could not help manage patients' ostomies or catheterization equipment. Our study also contributes a grounded theoretical framework for describing meaningful domains of patient experience with cystectomy and urinary diversion. We identified a common trajectory that includes decision-making, surgery and post-operative recovery, mastery of self-care, and reintegration.

Conclusions: Patients with radical cystectomy and urinary diversion report a wide variety of experiences not captured by quantitative measures. These findings demonstrate that many cystectomy patients could benefit from additional post-operative support. We offer a framework to measure patient-centered domains in future research.

Keywords: Patient-reported outcomes; bladder cancer; cystectomy; focus groups; qualitative methods.

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Conflict of interest statement

The authors have no conflicts of interest to report.

Figures

Fig.1
Fig.1
Discussion prompts for focus groups and individual interviews.
Fig.2
Fig.2
Domains and themes of patient experience.
See this image and copyright information in PMC

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