OBJECTIVES: The socioeconomic cost of severe haemophilia has previously been studied in Europe and the US, however there is a lack of data in Latin America. This study aims to quantify the socioeconomic burden of severe haemophilia across four Latin American countries: Argentina, Brazil, Chile, and Colombia.

METHODS: Haematologists were recruited using a panel-based approach, with patients recruited prospectively, with the index date defined as the date of clinical consultation. The CHESS LATAM study was a retrospective, cross-sectional burden of illness study. Case report forms (completed by haematologist) captured clinical, demographic, and direct medical cost data associated with haemophilia, with linked patient-completed (voluntary) forms capturing direct non-medical and indirect costs, as well as health-related quality of life, via the EQ-5D-5L, using a Uruguayan value set. Data was collected between September 2020 and May 2021, with resource use collected over the 12 months prior to the index date. Health-related quality of life was captured at the index date. Local unit costs were applied to resource use data to calculate per-patient costs, and converted into 2021 US dollars. Ethical compliance for this study was confirmed by the University of Chester Ethical committee.

RESULTS:: A total of 105 haematologists completed 830 patient case report forms, with 157 associated patient-completed forms captured. Mean, per-patient, total costs across all four countries were $117,414 and $49,920 per year for Haemophilia A and Haemophilia B, respectively. EQ-5D-5L scores averaged at 0.85 for both Haemophilia A and B across countries.

CONCLUSIONS: The ‘CHESS LATAM’ study is a novel and comprehensive dataset, encompassing the burden of severe haemophilia in four South American countries. This dataset allows for exploration of the socioeconomic burden across people with either haemophilia A or B, as well as identification of potential areas of unmet need in the population.