CHESS Study Investigates Economic Burden of Severe Hemophilia in Europe

Severe hemophilia often results in a significant economic and psychological burden on patients, caregivers, and the healthcare system as a whole. According to recent research, the majority of the cost burden can be attributed to the costs of clotting factor replacement therapy.

The Cost of Haemophilia in Europe: Socioeconomic Survey (CHESS) study, published by the Orphanet Journal of Rare Diseases, collected data from 2 questionnaires completed by patients and specialists in the 5 largest European Union countries (France, Germany, Italy, Spain, and the United Kingdom) referred to as the EU5. The data included clinical, economic, and demographic information from clinicians, while the information gathered from patients included non-medical resource use, work productivity impact, activity impairment, and therapy adherence.

To further identify the distributions of costs, the study took the questionnaire data and classified it into 4 categories:

1. Haemophilia-related ambulatory activity
2. Haemophilia-related hospital admissions
3. Clotting factor replacement therapy
4. Use of a professional care provider

The results of the data revealed the total 1-year costs of severe haemophilia among the 5 countries as €1.55 billion ($1.78 billion), while the annual cost per patient was calculated to be €199,541 ($228,195).

“With an overall population of more than 300 million, the EU5 is home to approximately 8,123 people with severe haemophilia A and 1,370 people with severe haemophilia B,” the researchers noted. “The CHESS study aimed to provide a snapshot view of the economic, societal, and psychological burden of severe haemophilia in adults within the EU5.”

The study estimated the overall total economic and societal cost of severe haemophilia in 2014 as €1.4 billion ($1.6 billion). Expenditures on clotting factor replacement therapy made up 97% of direct costs and accounted for the majority of the cost burden.

“Based on other existing studies of this patient group, we believe that the cost estimates from the CHESS cohort extrapolate well to the population of severe haemophilia patients in the EU5,” concludes the study. “The CHESS study highlights the benefits of observational study methodologies in capturing a ‘snapshot’ of information for patients with rare diseases.”