Exploring Patient Perspectives on Upper Tract Urothelial Cancer: A Qualitative Interview Study

INTRODUCTION: Patient interview data exploring the experiences of the most relevant symptoms and impacts of upper tract urothelial cancer (UTUC) remain scarce. This study aimed to develop a conceptual disease model (CDM) of UTUC grounded in patients' own experiences of UTUC and to capture disease-specific symptoms and impacts experienced before, during, and after cancer treatment. METHODS: . The findings from both the TLR and qualitative interviews were synthesized to develop a CDM. RESULTS: We interviewed 15 adults with UTUC (mean age, 56 years), including nine with low-grade and six with high-grade UTUC. Patients reported 22 symptoms: 11 pre-treatment and 21 during treatment and/or post-treatment. The most frequently reported pre-treatment symptoms were blood in urine (60%), fatigue/tiredness (53%), and pain (47%). During or post-treatment, the most frequently reported symptoms were fatigue/tiredness (93%), pain (47%), and weight loss (40%). Patients with low- and high-grade UTUC reported comparable numbers of distinct symptoms, both pre- and post-treatment. UTUC and its treatment impacted patients' emotional well-being (100%), activities of daily life (73%), relationships (73%), social functioning (60%), sleep (60%), and physical functioning (27%), and treatment burden was explicitly mentioned by 13%. The CDM of UTUC was developed, capturing the symptoms and impacts experienced by patients with low- or high-grade UTUC. CONCLUSIONS: This qualitative study identified a broad range of symptoms and impacts of UTUC and its treatment, highlighting the unmet patient needs associated with current UTUC management. Our findings provide a qualitative foundation to inform endpoint and clinical outcome assessment selections in clinical research and to guide patient-centered care strategies for UTUC.