BACKGROUND: The considerable burden of haemophilia in Europe necessitates continued generation of up-to-date information. CHESS aims to assess the socio-economic burden of haemophilia in adult male patients of all severities in 5 European countries: Italy, France, Germany, Spain and the United Kingdom.

OBJECTIVES: The primary objective was to quantify haemophilia-related costs, by disease severity, encompassing direct medical costs (e.g. treatment costs, hospital visits), direct non-medical costs (e.g. health aids/devices, travel costs) and indirect costs (e.g. work productivity impact, caregiver burden). Clinical burden was also assessed.

METHODS: CHESS is a 12-month retrospective, repeated cross-sectional study recruiting patients via their haematologists for the collection of physician-reported demographic, clinical and healthcare resource use data and patient-reported productivity and humanistic burden. Total costs (per patient) were quantified by summing the costs across components, using quantities collected in CHESS 2022 wave and unit costs sourced from the literature. Results are presented by clinical severity (based on baseline factor level): mild (>5-40%), moderate (1-5%), and severe (<1%).

RESULTS: The final sample consisted of 754 physician-forms and 166 corresponding patient-forms. Half of the cohort had severe haemophilia, 19% mild and 31% moderate condition. In the mild cohort, mean (SD) ABR was reported as 1.1 (3.2), increasing to 1.5 (2.1) and 2.7 (4.6) for moderate and severe respectively. Joint damage was also observed, with mean (SD) problem joints reported as 0.8 (1.4), 0.8 (1.3) and 1.0 (1.2) for the mild, moderate and severe cohorts. The highest per-patient cost component was factor treatment cost, averaging at approximately €47,000 for mild, €99,000 for moderate and €380,000 for severe condition. Total costs per-patient excluding factor also increased with severity, at approximately €3,000, €9,000 and €12,000 respectively.

CONCLUSIONS: These findings demonstrate the significant clinical and financial burden of haemophilia in Europe.