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. A targeted literature review (TLR) informed the qualitative interview guide development. Qualitative concept elicitation interviews were then performed with patients who had UTUC to understand their experiences of the disease and its treatment, focusing on symptoms and impacts. Interview transcripts were thematically analyzed using ATLAS.ti©. The findings from both the TLR and qualitative interviews were synthesized to develop a CDM. 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. 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.
Filipenko et al. (Wed,) studied this question.