Podium Session

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PD06-06: The Burden of Cystoscopic Bladder Cancer Surveillance – Anxiety, Discomfort, and Patient Preferences for Decision Making

Friday, May 12
10:20 AM - 10:30 AM
Location: BCEC: Room 161

Presentation Authors: Kevin Koo*, Lebanon, NH, Lisa Zubkoff, Brenda Sirovich, White River Junction, VT, John Seigne, Lebanon, NH, Philip Goodney, Florian Schroeck, White River Junction, VT

Introduction: Periodic cystoscopic surveillance involves a trade-off for patients with non-muscle-invasive bladder cancer (NMIBC), who must balance their discomfort and anxiety related to cystoscopy against the risk for cancer recurrence. The 2016 AUA NMIBC guideline recommends shared decision making for these patients, although evidence on the topic is scarce. We examined patient discomfort, anxiety, and preferences for decision making in NMIBC to inform future work on implementing shared decision making.

Methods: Veterans with a prior diagnosis of NMIBC were invited to complete a validated survey instrument assessing procedural discomfort and worry and to participate in focus groups about their experience and desire to be involved in surveillance decision making. Focus group transcripts were analyzed qualitatively, using (1) systematic iterative coding, (2) triangulation involving multiple perspectives from urologists and an implementation scientist, and (3) searching and accounting for disconfirming evidence.

Results: 12 patients participated in 3 focus groups. Median number of lifetime cystoscopy procedures was 6.5 (interquartile range (IQR) 4-10). Based on survey responses, participants experienced a high degree of procedural discomfort (mean 62 of maximum possible (max) 70, IQR 46-64,) and worry (mean 36 of max 42, IQR 31-42). Qualitative findings are summarized in the Table. Participants expressed substantial pre-procedural anxiety and worry about disease. Most did not perceive themselves as having a defined role in decision making surrounding their surveillance care. Their preferences to be involved in decision making, however, varied widely, ranging from acceptance of the physician's recommendation to uncertainty to dissatisfaction with not being involved more in determining the frequency and intensity of surveillance.

Conclusions: Bladder cancer patients experience substantial discomfort, anxiety, and worry related to surveillance cystoscopy and potential progression of disease. While some patients may be content to defer surveillance decisions to their physicians, others would prefer to be more involved. Future work should focus on defining patient-centered approaches to surveillance decision making and developing effective shared decision support tools.

Source Of Funding: Department of Veterans Affairs VISN 1 Career Development Award; Conquer Cancer Foundation Career Development Award; Dartmouth-Hitchcock Medical Center Department of Surgery internal Career Development Award

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