Concordance Between Patient and Physician Reporting of Symptoms for Metastatic Urothelial Cancer in Europe: A Real-World Survey
Author(s)
Mia Unsworth, BSc Hons1, Cameron Forshaw, MS1, Maria Walley, MS1, Hannah Wear, BS1, Amber Simpson, BS1, Mairead Kearney, MB, BCh, MPH, MBA, MSC Econ2.
1Adelphi Real World, Bollington, United Kingdom, 2Global Value Demonstration, Market Access and Pricing, Biopharma, Global Operations, Merck Healthcare KGaA, Darmstadt, Germany.
1Adelphi Real World, Bollington, United Kingdom, 2Global Value Demonstration, Market Access and Pricing, Biopharma, Global Operations, Merck Healthcare KGaA, Darmstadt, Germany.
OBJECTIVES: Metastatic urothelial cancer (mUC) primarily affects older people and is associated with poor outcomes. Understanding patients’ symptoms helps physicians consider quality of life in treatment decisions. We aimed to explore patient and physician concordance of symptom perception in Europe.
METHODS: Data were drawn from the Adelphi Real World mUC Disease Specific Programme™, a cross-sectional survey of medical oncologists/urologists and their patients with mUC in Europe, from December 2023 to July 2024. Physicians reported patient demographics and mUC symptoms at data collection selected from a predetermined list. Patients voluntarily self-reported their mUC symptoms at data collection using the same list. Agreement was measured using the Cohen κ coefficient, with level of agreement categorized as perfect (κ>0.8 to ≤1.0), good (κ>0.6 to ≤0.8), moderate (κ>0.4 to ≤0.6), fair (κ>0.2 to ≤0.4), or poor (>0.0 to ≤0.2).
RESULTS: Overall, 98 physicians reported data for 442 patients with mUC. Mean (SD) patient age was 68.8 (8.3) years, 64% were male, and 63% were former smokers. Symptoms most frequently reported by patients were fatigue (64%) and tiredness (44%), and by physicians were fatigue (59%) and lack of energy (38%). Urinary urgency was reported by 22% of patients and by 19% of physicians. Physician- and patient-reported fatigue/lack of energy showed moderate agreement (κ=0.46; p<0.0001). Moderate agreement was also observed for pain, such as pelvis (κ=0.487; p<0.0001), flank (κ=0.455; p<0.0001), and bladder (κ=0.466; p<0.0001). Fair agreement was observed for urinary urgency (κ=0.287; p<0.0001), feeling the need but being unable to urinate (κ=0.288; p<0.0001), headaches/migraines (κ=0.366; p<0.0001), and frequent need to urinate (κ=0.393; p<0.0001).
CONCLUSIONS: Low to moderate patient-physician symptom alignment was reported, with low agreement for symptoms that patients may be embarrassed to report, such as urinary urgency and incontinence. Proper evaluation of symptom burden in patients with mUC is essential for informed treatment strategies that consider quality of life.
METHODS: Data were drawn from the Adelphi Real World mUC Disease Specific Programme™, a cross-sectional survey of medical oncologists/urologists and their patients with mUC in Europe, from December 2023 to July 2024. Physicians reported patient demographics and mUC symptoms at data collection selected from a predetermined list. Patients voluntarily self-reported their mUC symptoms at data collection using the same list. Agreement was measured using the Cohen κ coefficient, with level of agreement categorized as perfect (κ>0.8 to ≤1.0), good (κ>0.6 to ≤0.8), moderate (κ>0.4 to ≤0.6), fair (κ>0.2 to ≤0.4), or poor (>0.0 to ≤0.2).
RESULTS: Overall, 98 physicians reported data for 442 patients with mUC. Mean (SD) patient age was 68.8 (8.3) years, 64% were male, and 63% were former smokers. Symptoms most frequently reported by patients were fatigue (64%) and tiredness (44%), and by physicians were fatigue (59%) and lack of energy (38%). Urinary urgency was reported by 22% of patients and by 19% of physicians. Physician- and patient-reported fatigue/lack of energy showed moderate agreement (κ=0.46; p<0.0001). Moderate agreement was also observed for pain, such as pelvis (κ=0.487; p<0.0001), flank (κ=0.455; p<0.0001), and bladder (κ=0.466; p<0.0001). Fair agreement was observed for urinary urgency (κ=0.287; p<0.0001), feeling the need but being unable to urinate (κ=0.288; p<0.0001), headaches/migraines (κ=0.366; p<0.0001), and frequent need to urinate (κ=0.393; p<0.0001).
CONCLUSIONS: Low to moderate patient-physician symptom alignment was reported, with low agreement for symptoms that patients may be embarrassed to report, such as urinary urgency and incontinence. Proper evaluation of symptom burden in patients with mUC is essential for informed treatment strategies that consider quality of life.
Conference/Value in Health Info
2025-11, ISPOR Europe 2025, Glasgow, Scotland
Value in Health, Volume 28, Issue S2
Code
PCR51
Topic
Patient-Centered Research
Topic Subcategory
Health State Utilities, Patient-reported Outcomes & Quality of Life Outcomes
Disease
Urinary/Kidney Disorders