Mp33-03 “I Was in a Very Deep, Dark Place… I Wasn’t Prepared for That”: A Qualitative Analysis of the Mental Health Needs of Cystectomy Patients

You have accessJournal of UrologyHealth Services Research: Quality Improvement & Patient Safety II (MP33)1 May 2024MP33-03 "I WAS IN A VERY DEEP, DARK PLACE… I WASN'T PREPARED FOR THAT": A QUALITATIVE ANALYSIS OF THE MENTAL HEALTH NEEDS OF CYSTECTOMY PATIENTS Alexa Rose, Erica Zeng, Bhabna Pati, Megan Saucke, Taviah Levenson, E. Jason Abel, Tudor Borza, David F. Jarrard, Michael Risk, Daniel D. Shapiro, Esra Alagoz, and Kyle A. Richards Alexa RoseAlexa Rose , Erica ZengErica Zeng , Bhabna PatiBhabna Pati , Megan SauckeMegan Saucke , Taviah LevensonTaviah Levenson , E. Jason AbelE. Jason Abel , Tudor BorzaTudor Borza , David F. JarrardDavid F. Jarrard , Michael RiskMichael Risk , Daniel D. ShapiroDaniel D. Shapiro , Esra AlagozEsra Alagoz , and Kyle A. RichardsKyle A. Richards View All Author Informationhttps://doi.org/10.1097/01.JU.0001009520.30626.80.03AboutPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract INTRODUCTION AND OBJECTIVE: Studies have shown that cystectomy has a large psychological and emotional burden on patients with bladder cancer. However, there has been little work characterizing potential areas of improvement. This project aimed to understand patients' experiences undergoing cystectomy and to identify patient-centric methods that improve perioperative support. METHODS: We conducted five focus groups (4 virtual, 1 in person) including patients with bladder cancer (n=17) who underwent cystectomy. Groups were divided by diversion type and gender. Patients were asked questions about their experiences and potential areas of improvement. The conversations were recorded and transcribed. Qualitative analysis was conducted using the "Sort and Sift, Think and Shift" method. Transcripts were coded in Nvivo and themes were summarized in higher level analysis. RESULTS: Throughout the discussion, patients reported that while their care team provided physical support for their illness, they did not provide information or discuss support for mental health during this challenging time. Patients described feelings of depression, anger, and anxiety in response to their cancer diagnosis, need for cystectomy, and living with urinary diversion. Many expressed a dichotomy in feeling grateful for the lifesaving surgery, while also feeling bitter about the impact cystectomy has had on their daily life. An overarching theme was the unexpected psychological burden of cystectomy. Patients experienced daily mental hardship while adapting to managing their urinary diversion. They experienced distress from diversion visibility in public and in sexual encounters. Patients did not bring up their mental health struggles with their surgeon, however, they reported that if their provider had initiated the discussion and offered a referral, they would have accepted support. Patients reported the benefit of social support networks for emotional support before and after surgery. CONCLUSIONS: Focus groups consistently identified the psychological difficulties of bladder cancer diagnosis and cystectomy. Patients identified potential avenues for improvement such as incorporating mental health support into the care plan and perioperative discussion regarding the potential emotional impact of surgery. Source of Funding: National Institute of Diabetes and Digestive and Kidney, NIH grant, T35DK062709. Wisconsin Urologic Research Institute © 2024 by American Urological Association Education and Research, Inc.FiguresReferencesRelatedDetails Volume 211Issue 5SMay 2024Page: e561 Advertisement Copyright & Permissions© 2024 by American Urological Association Education and Research, Inc.Metrics Author Information Alexa Rose More articles by this author Erica Zeng More articles by this author Bhabna Pati More articles by this author Megan Saucke More articles by this author Taviah Levenson More articles by this author E. Jason Abel More articles by this author Tudor Borza More articles by this author David F. Jarrard More articles by this author Michael Risk More articles by this author Daniel D. Shapiro More articles by this author Esra Alagoz More articles by this author Kyle A. Richards More articles by this author Expand All Advertisement PDF downloadLoading ...