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

Objective To examine discomfort, anxiety, and preferences for decision making in patients undergoing surveillance cystoscopy for non–muscle-invasive bladder cancer (NMIBC). Methods Veterans with a prior diagnosis of NMIBC completed validated survey instruments assessing procedural discomfort, worry, and satisfaction, and were invited to participate in semistructured 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 Twelve patients participated in 3 focus groups. Median number of lifetime cystoscopy procedures was 6.5 (interquartile range 4-10). Based on survey responses, two-thirds of participants (64%) experienced some degree of procedural discomfort or worry, and all participants reported improvement in at least 2 dimensions of overall well-being following cystoscopy. Qualitative analysis of the focus groups indicated that participants experience preprocedural anxiety and worry about their disease. Although many participants did not perceive themselves as having a defined role in decision making surrounding their surveillance care, their preferences to be involved in decision making varied widely, ranging from acceptance of the physician's recommendation, to uncertainty, to dissatisfaction with not being involved more in determining the intensity of surveillance care. Conclusion Many patients with NMIBC experience discomfort, anxiety, and worry related to disease progression and not only cystoscopy. Although some patients are content to defer surveillance decisions to their physicians, others prefer to be more involved. Future work should focus on defining patient-centered approaches to surveillance decision making.