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

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. 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. Physicians (n = 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. 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. Metastatic urothelial cancer (meaning urothelial cancer that has spread from its original location) is an advanced form of urothelial cancer mainly affecting older people. Its symptoms and treatments can greatly reduce a person’s quality of life, with patients often needing help with day-to-day tasks. With more treatment options, doctors need to balance effectiveness, safety, and quality of life when choosing treatment. To help with this, we must understand how metastatic urothelial cancer impacts quality of life, which symptoms have the biggest impact, how well doctors recognize symptoms, and what supportive care patients need. We looked into these factors using results from a survey of patients and their doctors conducted in France, Germany, Italy, Spain, and the United Kingdom between December 2023 and July 2024. We found that patients had worse quality of life than the general population, with pain and fatigue having the largest impact. Compared with patients, doctors often underreported symptoms, with only fair to moderate agreement on symptoms patients were experiencing. Overall, 61% of physicians reported that their patient received additional support/care from a caregiver, and 49% of patients also reported receiving additional care. Most received this care from family or friends. On average, patients reported needing 25 hours of care per week (with tasks such as help getting around and with household tasks). These results show the need for new approaches to improve communication between patients and their doctors to allow doctors to treat the symptoms that have the biggest impact and potentially reduce the burden on caregivers.