Pain interferes with daily activities, emotions and sleep in adults with severe, moderate and mild haemophilia: A national cross‐sectional survey

Introduction Pain is a major issue in people with haemophilia (PwH). Few studies comprehensively assessed pain in PwH using a biopsychosocial framework and studies in mild PwH are lacking. Aim To assess pain prevalence, pain interference and their relationship with health‐related quality of life (HR‐QoL) in male adults with haemophilia. Methods A survey was initiated by the Belgian national member organisation. Pain in the last 24 h, pain severity (BPI‐PS) and pain interference (BPI‐PI) scores were obtained with the Brief Pain Inventory short‐form (BPI). HR‐QoL was evaluated with the EQ‐5D‐3L, giving the health utility index (EQ‐HUI). Associations between EQ‐HUI, BPI‐PS and BPI‐PI were analysed using Pearson's correlation test. A multiple regression analysed the relationship between HR‐QoL and BPI‐PS, with age and haemophilia severity as confounding factors. Results Within 185 respondents (97, 31 and 57 respectively severe, moderate and mild PwH), 67% (118/177) reported pain. In severe, moderate and mild PwH, respectively 86% (79/92), 71% (22/31) and 32% (17/54) reported pain. Median [IQR] BPI‐PS, BPI‐PI and EQ‐HUI scores were respectively 1.5 [.0; 4.0], 1.6 [.0; 3.6] and .81 [.69; 1.00]. PwH reported pain interference with general activity (56% (99/176)), psychosocial factors such as mood (53% (93/175)), and sleep (51% (90/177)). Moderate correlations were found between EQ‐HUI, BPI‐PS and BPI‐PI. After adjusting for age and haemophilia severity, BPI‐PS explained 14% of HR‐QoL variance. Conclusions Pain is a major issue amongst PwH, including people with mild haemophilia. Pain interferes with activities, emotions, sleep and HR‐QoL, arguing for a comprehensive biopsychosocial approach of pain.