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.