Health-related quality of life, symptoms, and burden in metastatic urothelial cancer in Europe: a real-world survey

AIMS: To describe health-related quality of life (HRQoL), physician-patient symptom agreement, and caregiver burden in patients with metastatic urothelial cancer (mUC) using real-world physician-patient matched data. METHODS: Data were drawn from the Adelphi mUC Disease Specific Programme™, a cross-sectional survey (December 2023-July 2024) of patients and physicians in France, Germany, Italy, Spain, and the United Kingdom. Physicians provided demographic, symptom, and caregiver data. Patients completed questions on symptoms and caregiving, the EQ-5D-5L, European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30), and Brief Pain Inventory (BPI). Kappa analysis assessed agreement; other analyses were descriptive. RESULTS: = 98) reported on 455 patients with a self-completion form (median age, 69.0 years; 69% male). Mean EORTC QLQ-C30, EQ-5D-5L, and BPI composite scores were 54.1, 0.77, and 3.3, respectively; pain and fatigue were highly impactful symptoms. Physician-patient agreement was moderate for all symptoms except frequent need to urinate, headaches/migraines, feeling the need but being unable to urinate, and urinary urgency, for which agreement was fair. Half of patients reported needing a caregiver. CONCLUSIONS: Patient and caregiver burden was substantial, with limited physician-patient symptom agreement. Better communication and a patient-centric approach to care are needed to alleviate burden.