The patient experience with localized upper tract urothelial cancer.

OBJECTIVE: To understand the experiences of patients with low-grade upper tract urothelial carcinoma via in-depth interviews covering the diagnosis, treatment, and follow-up.

METHODS: A qualitative study was performed using 60 minutes interviews with patients diagnosed with low-grade UTUC. The participants received either endoscopic treatment (ET), radical nephroureterectomy (RNU) or intracavity mitomycin gel for the pyelocaliceal system. Interviews were conducted by trained interviewers via telephone using a semi-structured questionnaire. The raw interviews were coded into discrete phrases that were grouped together based on similarity of meaning. Inductive data analysis methodology was used. Themes were identified and refined to overarching themes striving to encompass the original meaning and intent of participant's words.

RESULTS: Twenty individuals were enrolled; 6 were treated with ET, 8 were treated with a RNU, and 6 were treated with intracavitary mitomycin gel. The median age was 74 years (52-88) and half of participants were women. Most endorsed good, very good, or excellent health. Four unique themes were identified: 1. Misunderstandings of the nature of disease; 2. Importance of physical symptoms during treatment as a proxy for recovery; 3. Competing desires for kidney preservation versus expeditious treatment; and 4. Trust in doctors and minimal perceived shared decision-making.

CONCLUSIONS: Low grade UTUC is a disease with a diverse clinical presentation and an evolving landscape of available treatments. This study provides insight into patients' perspective and can help guide counseling and treatment selection.