Anxiety and depression among adults with haemophilia A: Patient and physician reported symptoms from the real‐world European CHESS II study

Abstract

Introduction: The physical pain and disability affecting many people with haemophilia A (PwHA) are known detractors from psychological wellbeing. While psychosocial support is considered a core tenet of the haemophilia comprehensive care structure, the extent to which mental health challenges are detected and monitored by the individuals treating haematologist remains relatively unexplored. Aim: To describe prevalence of anxiety and depression in a real‐world cohort of adult PwHA and evaluate the congruence in reporting of anxiety or depression (A/D) between PwHA and their treating physicians. Methods: Data for PwHA without inhibitors was drawn from the European ‘Cost of Haemophilia: A Socioeconomic Survey II’ (CHESS II) study. Haematologist‐indicated comorbidities of anxiety and depression were unified into a single A/D indicator. The EQ‐5D‐5L health status measure was used to characterise self‐reported A/D, with individuals stratified into two non‐mutually exclusive subgroups based on level of A/D reported (Subgroup A: ‘some’ or above; Subgroup B: ‘moderate’ or above). Result: Of 381 PwHA with evaluable EQ‐5D‐5L responses, 54% (n = 206) self‐reported at least some A/D (Subgroup A) and 17% (n = 66) reported at least moderate A/D (Subgroup B). Patient‐physician congruence in A/D reporting was 53% and 76% for Subgroups A and B, respectively. Descriptive analysis suggested that individuals with physician‐ and/or self‐reported A/D experienced worse clinical outcomes (bleeding events, joint disease, chronic pain). Conclusion: While adverse clinical outcomes appear to correlate with A/D, self‐reports of moderate–severe symptoms occasionally lacked formal recognition from treating physicians. Cross‐disciplinary surveillance of mental health issues could improve both psychological and clinical outcomes among PwHA.