Health-related quality of life and symptom concordance between patients and physicians in pulmonary arterial hypertension in the United States, Europe, and Japan

• Published in: Respiratory medicine 2024-11, p.107869, Article 107869
• Main Authors: White, R. James, Vizza, Dario, Klok, Rogier, Lautsch, Dominik, Harley, Julia, Small, Mark
• Format: Article
• Language: English
• Subjects: Concordance; Health-Related Quality of Life; Patient-reported; Pulmonary arterial hypertension; Real-world; Symptomology
• ISSN: 0954-6111; 1532-3064; 1532-3064
• DOI: 10.1016/j.rmed.2024.107869

This study involved analysis of a real world, cross-sectional survey of physicians and their patients with pulmonary arterial hypertension (PAH). Physician and patient symptom concordance was assessed and patients self-reported Health-Related Quality of Life (HRQoL). Data were drawn from the Adelphi PAH Disease Specific Programme (DSP)™ in the United States, France, Germany, Italy, Spain, United Kingdom, and Japan, between March and August 2022. EQ-5D 5L utility, EQ-5D Visual Analogue Scale (VAS) scores, and emPHasis-10 (e10) HRQoL scores were reported by patients and physician-patient symptom concordance which was assessed with Cohen’s Weighted Kappa (κ) analysis. Of 628 PAH patients, the mean (SD) EQ-5D VAS and e10 scores were 66 (17) and 23 (11). Data was stratified by World Health Organization Functional Class (WHO-FC). As WHO-FC increased, EQ-5D utility and VAS scores decreased and e10 scores increased, indicating poorer patient-reported HRQoL. Symptom concordance varied, ranging from κ = 0.11 - 0.57 (slight-moderate agreement), and physicians frequently underestimated the presence and severity of patient-reported symptoms. Future research should aim to bridge this gap between patient and physician understanding of HRQoL and the symptom burden associated with PAH. •A high disease burden was observed in comparison to age-matched population samples•As limitation to physical activity increased, patient quality of life worsened•Physicians underestimated the presence and severity of patient-reported symptoms•Symptom discordance was associated with greater limitation to physical activity