"I was in a very deep, dark place... I wasn't prepared for that": A qualitative assessment of the emotional well-being needs of patients undergoing cystectomy

Introduction: Studies have shown that cystectomy has a large psychological burden on patients with bladder cancer. However, there has been little work characterizing areas of improvement. This project aimed to understand cystectomy patients' experiences and to identify patient-centered methods to improve perioperative support.

Methods: Five focus groups, divided by diversion type and gender, (4 virtual, 1 in person) of patients with bladder cancer (n = 17) who underwent cystectomy were conducted. Conversations were transcribed and qualitatively analyzed using the Sort and Sift, Think and Shift© method. Transcripts were coded in NVivo and themes were summarized in higher-level analysis.

Results: Patients described feelings of depression, anger, and anxiety in response to their cancer diagnosis, need for cystectomy, and living with urinary diversion. Patients experienced daily mental hardship while adapting. They experienced distress from diversion visibility in public and private encounters. Many expressed a dichotomy of feeling grateful for the treatment while also feeling bitter about the impact on their daily life. Patients reported that while their care team provided support for tangible needs, they did not provide information for nor discuss mental and sexual health needs during this time. Patients reported that if their provider had initiated discussions and offered referrals, they would have accepted support. Patients also emphasized the benefit of social and peer support networks for emotional support.

Conclusions: Groups identified the psychological difficulties of bladder cancer diagnosis and cystectomy. Potential avenues for improvement included incorporating support resources into the care plan and perioperative discussion regarding the emotional impact of surgery.