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

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dc.contributor.authorCarneiro, J. D. A.
dc.contributor.authorBlanchette, V.
dc.contributor.authorOzelo, M. C.
dc.contributor.authorAntunes, S. V. [UNIFESP]
dc.contributor.authorVillaca, P. R.
dc.contributor.authorYoung, N. L.
dc.contributor.authorCastro, D.
dc.contributor.authorBrandao, L. R.
dc.contributor.authorCarcao, M.
dc.contributor.authorAbad, A.
dc.contributor.authorFeldman, B. M.
dc.date.accessioned2019-08-19T11:48:33Z
dc.date.available2019-08-19T11:48:33Z
dc.date.issued2017
dc.description.abstractIntroduction: 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.en
dc.description.affiliationUniv São Paulo, Ctr Hemofilia, São Paulo, Brazil
dc.description.affiliationUniv São Paulo, Inst Crianca, Hosp Clinicas, Fac Med, São Paulo, Brazil
dc.description.affiliationHosp Sick Children, Div Hematol Oncol, Toronto, ON, Canada
dc.description.affiliationUniv Toronto, Dept Pediat, Toronto, ON, Canada
dc.description.affiliationUniv Estadual Campinas, Unit Hemophilia IHTC Claudio LP Correa, INCT Sangue Hemoctr Unicamp, Campinas, SP, Brazil
dc.description.affiliationUniv Fed São Paulo UNIFESP, Dept Hematol, São Paulo, Brazil
dc.description.affiliationUniv São Paulo, Hosp Clin, Serv Hematol, Fac Med, São Paulo, Brazil
dc.description.affiliationLaurentian Univ, Sch Rural & Northern Hlth, Sudbury, ON, Canada
dc.description.affiliationHosp Sick Children, Dept Diagnost Imaging, Toronto, ON, Canada
dc.description.affiliationHosp Sick Children, Div Hematol Oncol, Dept Pediat, Toronto, ON, Canada
dc.description.affiliationHosp Sick Children, Dept Child Hlth Evaluat Sci, Toronto, ON, Canada
dc.description.affiliationHosp Sick Children, Div Rheumatol, Dept Pediat, Toronto, ON, Canada
dc.description.affiliationUniv Toronto, Inst Hlth Policy Management & Evaluat, Dalla Lana Sch Publ Hlth, Toronto, ON, Canada
dc.description.affiliationUnifespUniv Fed São Paulo UNIFESP, Dept Hematol, São Paulo, Brazil
dc.description.sourceWeb of Science
dc.description.sponsorshipBaxalta US Inc. Corporation through the Baxalta
dc.format.extent682-688
dc.identifierhttp://dx.doi.org/10.1111/hae.13230
dc.identifier.citationHaemophilia. Hoboken, v. 23, n. 5, p. 682-688, 2017.
dc.identifier.doi10.1111/hae.13230
dc.identifier.issn1351-8216
dc.identifier.urihttp://repositorio.unifesp.br/handle/11600/51279
dc.identifier.wosWOS:000411824500031
dc.language.isoeng
dc.publisherWiley
dc.rightsinfo:eu-repo/semantics/restrictedAccess
dc.subjectfactor VIII and IXen
dc.subjectglobal healthen
dc.subjecthaemophiliaen
dc.subjectoutcome measuresen
dc.subjectprophylaxisen
dc.titleComparing the burden of illness of haemophilia between resource-constrained and unconstrained countries: the Sao Paulo-Toronto Hemophilia Studyen
dc.typeinfo:eu-repo/semantics/article
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