Abstract A017: Patient-reported experience related to aspects of quality of life after cystectomy from an exploratory focus group
Authors: Imran Nida , Peters Wesley , Fixler Karen , Madireddi Priyanka , Shea Lisa M. , Ireland Andrea 
Published: May 2024

Purpose: These exploratory focus groups examined patient experiences after having a cystectomy following bladder cancer. Methods: US individuals aged &gt;50 years with self-reported diagnosis of non-muscle invasive bladder cancer (NMIBC) or muscle invasive bladder cancer (MIBC) who had undergone partial or radical cystectomy were recruited through a Patient Engagement Research Council program and invited to participate in an exploratory focus group (October 2022). Patients completed a prework survey on initial diagnosis, treatments, and how aspects of their life changed over time from pre-diagnosis, around the time of decision to undergo cystectomy, 90 days after cystectomy, and at present day. Patients attended gender-specific focus group sessions to discuss their patient journey, support needs, and how having a cystectomy affected their lives. Discussions were facilitated by a gender-matched moderator using a semi-structured discussion guide. Patients provided written informed consent and were compensated for their time. Key themes were identified by coding of audio transcripts and direct observations via the qualitative research analysis software MAXQDA. Results: Patients were six White adults (female n=3, male n=3, median age 68 years) with NMIBC (n=2) or MIBC (n=4) who underwent radical cystectomy between 2000 and 2020. Patients reported that bladder-sparing approaches were rarely introduced or discussed by their care team during their diagnostic journey, instead identifying disease eradication and pain improvement as primary drivers for choosing cystectomy. In the first 90 days post-surgery, patients reported that cystectomy negatively affected their ability to perform daily activities, mental health, and physical intimacy while adapting to a “new normal,” citing challenges with urinary diversion routes. Female patients cited a general lack of female-centric support (e.g. feminine hygiene and care education) as their support groups were mostly comprised of male patients focusing on male-centric issues (e.g., erectile dysfunction). In the present day, patients reported lower sex drive, satisfaction with body image, and physical intimacy. Patients called for more privacy consideration during medical examinations, better ostomy care support, increased awareness among healthcare professionals about the struggles patients face throughout their cystectomy journey, and improved education about available treatment options (including bladder preservation) and possible ramifications of cystectomy on all aspects of life (including sexual health and female-centric needs). Conclusions: Cystectomy can negatively affect patients’ lives, affecting their ability to participate in daily activities, mental health, and physical intimacy among those with NMIBC and MIBC. Patients expressed the need for holistic, long-term support (including awareness of treatment options, emotional support, and ostomy care) before, during, and after cystectomy.

Citation Format: Nida Imran, Wesley Peters, Karen Fixler, Priyanka Madireddi, Lisa M. Shea, Andrea Ireland. Patient-reported experience related to aspects of quality of life after cystectomy from an exploratory focus group [abstract]. In: Proceedings of the AACR Special Conference on Bladder Cancer: Transforming the Field; 2024 May 17-20; Charlotte, NC. Philadelphia (PA): AACR; Clin Cancer Res 2024;30(10_Suppl):Abstract nr A017.