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Differential humanistic and economic burden of mild, moderate and severe haemophilia in european adults: a regression analysis of the CHESS II study
Rodriguez-Santana, Idaira DasMahapatra, Pronabesh Burke, Tom Hakimi, Zalmai Bartelt-Hofer, José Nazir, Jameel O'Hara, Jamie
Rodriguez-Santana, Idaira
DasMahapatra, Pronabesh
Burke, Tom
Hakimi, Zalmai
Bartelt-Hofer, José
Nazir, Jameel
O'Hara, Jamie
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Publication Date
2022-04-04
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Abstract
Background: The lifelong nature of haemophilia makes patient-centred and societal assessments of its impact important to clinical and policy decisions. Quantifying the humanistic and economic burden by severity is key to assessing the impact on healthcare systems. We analysed the annual direct medical (excluding factor replacement therapy costs) and non-medical costs as well as societal costs and health-related quality of life (HRQoL) of mild, moderate and severe disease among adults with haemophilia A or B without inhibitors in Europe. Participants in the CHESS II study reported their HRQoL, non-medical costs, and work impairment; physicians provided costs and consultation history from the medical chart. Descriptive statistics summarized patient characteristics, costs, and HRQoL scores. Regression models estimated differences in outcomes for moderate and severe versus mild disease, adjusting for age, body mass index, country, comorbidities, weight-adjusted factor consumption and education.
Results: The analytic sample included 707 patients with a mean age of 38 years; the majority of patients had haemophilia A (81%), and 47% had severe disease, followed by moderate (37%) and mild disease (16%). Patients with severe or moderate disease had on average higher direct costs, €3105 and €2469 respectively, versus mild disease. Societal costs were higher for patients with severe and moderate disease by €11,115 and €2825, respectively (all P < 0.01). HRQoL scores were also significantly worse for severe and moderate patients versus those with mild disease.
Conclusion: Severity of haemophilia is predictive of increasing economic and humanistic burden. The burden of moderate disease, as measured by direct costs and HRQoL, did not appear to be substantially different than that observed among patients with severe haemophilia.
Citation
Rodriguez-Santana, I., DasMahapatra, P., Burke, T., Hakimi, Z., Bartelt-Hofer, J., Nazir, J., & O'Hara, J. Differential humanistic and economic burden of mild, moderate and severe haemophilia in european adults: a regression analysis of the CHESS II study. Orphanet Journal of Rare Diseases, 17(1), article-number 148. https://doi.org/10.1186/s13023-022-02300-1
Publisher
BioMed Central
Journal
Orphanet Journal of Rare Diseases
Research Unit
DOI
10.1186/s13023-022-02300-1
PubMed ID
PubMed Central ID
Type
Article
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Series/Report no.
ISSN
EISSN
1750-1172