Defining Priorities to Improve Patient Experience in Non-Muscle Invasive Bladder Cancer.

Background: Although approximately 75% of bladder cancers are non-muscle invasive (NMIBC) at diagnosis, most research tends to focus on invasive disease (e.g., experiences related to radical cystectomy and urinary diversion). There is a lack of studies on quality of life, and especially qualitative research, in bladder cancer generally. As a result, relatively little is known about the experiences and needs of NMIBC patients.

Objective: To understand patient experience, define care priorities, and identify targets for care improvement in NMIBC across the cancer continuum.

Methods: Through focus groups, patients treated for NMIBC (stage <T2) were invited to share their care experiences including diagnosis, treatment, and survivorship. Transcripts were analyzed using conventional content analysis to identify themes and subthemes.

Results: Twenty patients (16 male, 4 female, all white) participated in three focus groups. Five primary themes emerged: access to care, provider characteristics and communication, quality of life, goals of care/influences on decision-making, and role of social support. Patients with NMIBC desired timely access to care and honest and caring provider communication. They described urinary function and emotional quality of life changes resulting from diagnosis and treatment. Avoiding cystectomy and being alive for family were the major decision influencers.

Conclusion: In this qualitative study, we identified access to care, provider characteristics and communication, quality of life, values/influences on decision-making, and social support as priority areas to improve patient experience in NMIBC. Care redesign efforts should focus on improving access, enhancing provider communication, reducing side effects, and supporting caregiver roles.