DESCRIPTION (provided by applicant): Few studies have explored treatment-related disabilities among cancer survivors, yet for many survivors, surgical interventions have persistent effects on everyday life. In the case of muscle-invasive bladder cancer, surgery for cancer treatment involves removing the bladder. Each year 7,000 people with bladder cancer in the United States have cystectomy surgery (bladder removal). Portions of their bowel are used to create different types of urinary diversions, which are new conduits and reservoirs that create new ways for urine to be eliminated from the body. Urinary diversion (UD) reconstructions allow patients to pass urine by creating a new bladder (neobladder) that allows urine to flow through the urethra, or by creating an ileal conduit leading to an opening in the abdomen (urostomy). To date, research has not provided clear evidence to guide patients' and clinicians' decision-making about choosing between a neobladder or ileal conduit diversion. The choice has profound implications for cancer survivors and their families, and the long-term costs and complications of ileal conduit vs. neobladder diversions are unknown. This mixed-method, comparative effectiveness study will compare costs, complications, patient- and family- centered outcomes related to UD. Study participants will include bladder cancer patients undergoing cystectomy and their family caregivers within three Kaiser Permanente (KP) regions with a membership base of over six million enrollees. This population base, along with comprehensive electronic medical record data, form a unique opportunity to compare varied outcomes in a large, defined cohort of bladder cancer patients treated in integrated delivery systems. We will collect extensive data on a cohort of 1,500 bladder cancer patients with cystectomies and UD performed in 2010-2015. We will also recruit the subgroup of patients whose cystectomies are performed during 2013-2015, along with their family caregivers, for participation in two annual surveys to gather patient-centered, care giving and economic data. Our specific aims are: AIM 1: Determine the socio-demographic, clinical, and surgeon characteristics that predict UD choice among bladder cancer patients receiving cystectomies from 2010 through 2015 (N=1,500). (Approximately 20% will be neobladder patients.) AIM 2: Compare incremental health care expenses attributable to UD and the incidence of late UD-related complications (>90 days post-op) for patients with ileal conduits vs. neobladders (N=1,500). AIM 3: Determine the impacts of UD type on economic and patient- and family-centered outcomes, as collected in surveys of 375 patients and 178 family caregivers 5 and 17 months after UD surgery.
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