Comparing the burden of illness of haemophilia between resource-constrained and unconstrained countries: the São Paulo-Toronto Hemophilia Study

Autor:	Manuel Carcao, Brian M. Feldman, L. R. Brandao, Audrey Abad, Victor S. Blanchette, Jorge David Aivazoglou Carneiro, Paula Ribeiro Villaça, D Castro, S. V. Antunes, Margareth C. Ozelo, Nancy L. Young
Rok vydání:	2017
Předmět:	Male Pediatrics medicine.medical_specialty Canada Standard of care Adolescent Resource constrained Developing country 030204 cardiovascular system & hematology Haemophilia Hemophilia A Severity of Illness Index Limited access 03 medical and health sciences 0302 clinical medicine Cost of Illness Global health medicine Health Status Indicators Humans Child Developing Countries Genetics (clinical) Clotting factor business.industry Outcome measures Hematology General Medicine medicine.disease Cross-Sectional Studies 030220 oncology & carcinogenesis Quality of Life Health Resources business Brazil
Zdroj:	Haemophilia : the official journal of the World Federation of Hemophilia. 23(5)
ISSN:	1365-2516
Popis:	Introduction Although the regular replacement of clotting factor concentrates (prophylaxis) has been well established as the standard of care for severe haemophilia, the high cost of factor concentrates has limited access to prophylaxis in countries with under-developed or developing economies. Aims We studied the health gap that could be addressed by providing unlimited access to clotting factor concentrates with implementation of long-term prophylaxis initiated from an early age in life. Methods We performed a cross-sectional study of a random, representative sample of boys with moderate and severe haemophilia at three haemophilia treatment centres in Sao Paulo, Brazil, and one centre in Toronto, Canada. Results Canadian subjects were more often treated with prophylaxis, and began treatment at an earlier age. Fewer Canadian subjects had bleeds within the preceding 6 months (19 vs. 34, P = 0.003). Canadian subjects had lower (better) Pettersson radiographic scores (1.5 vs. 6.0, P = 0.0016), lower (better) Hemophilia Joint Health Scores (5.5 vs. 10.5, P = 0.0038), higher (better) Activity Scale for Kids scores (96.6 vs. 92.0, P = 0.033), more time spent in vigorous activity, and higher (better) social participation scores. Conclusions Our findings suggest that increasing access to clotting factor concentrates for young boys with severe haemophilia is a global imperative.
Databáze:	OpenAIRE
Externí odkaz:	https://explore.openaire.eu/search/publication?articleId=doi_dedup___::d7bd2ab87dbfc3f1f749d63188ba66a6 https://pubmed.ncbi.nlm.nih.gov/28440005 Zobrazit plný text záznamu Plný text ve formátu PDF Plný text ve formátu HTML
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