Recovering from Cystectomy: Patient Perspectives

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.

Comparison of Robot-Assisted and Open Radical Cystectomy in Recovery of Patient-Reported and Performance-Related Measures of Independence

“…Baseline characteristics including age, sex, performance status, body mass index, tumor stage, diversion type, and receipt of perioperative chemotherapy were similar in both groups (Table 1). 10.5-12.1] vs 9.4 [95% CI, 8.9-9.9]; P < .001). Also, there was a significant increase in the mean deterioration from baseline after surgery in patients undergoing CUD.…”

A journey to a new stable state—further development of the postoperative recovery concept from day surgical perspective: a qualitative study

“…Hence, postoperative recovery after day surgery is an individual process. This way of describing the postoperative period as a process has similarities with McMullen et al's 23 study, in which postoperative recovery among patients who had surgery for bladder cancer was described as a transformative process that started with preoperative decision-making and ended with mastery of self-care and reintegration into the activities of daily life. In the present study, it became obvious that the participants were not fully recovered at the time of the interviews-that is, they had not reached a new stable state.…”

Information needs in patients with bladder cancer undergoing radical cystectomy – A qualitative review with thematic synthesis

“…When this did not occur, the patient's information needs were not met (Garg et al, 2018;Mohamed et al, 2014;Rammant et al, 2021;Smith et al, 2019). Alternative sources of information were used to create security and confidence and helped to fill the information gap and the unmet information needs (Klein et al, 2021;McMullen et al, 2019). One of the most significant alternative sources of information was lived experience from patients who had previously undergone cystectomy.…”

“…The importance of health care staff knowing that information needed to come from different sources was crucial to meet the patients' information needs. It provided a holistic perspective that led to patients feeling safe (McMullen et al, 2019;Rammant et al, 2021).…”