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Cross-Sectional Epidemiological Study to Understand the Approach to Treatment in the Routine Care of Patients with Hemophilia B in Spain and Portugal

2023Journal article Open access
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dc.contributor.authorÁlvarez-Román, MT
dc.contributor.authorCarvalho, M
dc.contributor.authorBenítez-Hidalgo, O
dc.contributor.authorCatarino, C
dc.contributor.authorGarcía-Frade, LJ
dc.contributor.authorRodríguez-López, M
dc.contributor.authorAntunes, M
dc.contributor.authorFernández-Mosteirín, N
dc.contributor.authorKjöllerström, P
dc.contributor.authorMorais, S
dc.contributor.authorGalmes, B
dc.contributor.authorLópez-Fernández, MF
dc.contributor.authorRiera-Sans, L
dc.contributor.authorRodrigues, JF
dc.contributor.authorJiménez-Yuste, V
dc.contributor.authorSalvado, R
dc.date.accessioned2024-08-13T09:02:14Z
dc.date.available2024-08-13T09:02:14Z
dc.date.issued2023
dc.description.abstractIntroduction: Treatment options for patients with hemophilia B (PWHB) have improved in the last decade, but epidemiological studies are required to optimize clinical management and define unmet needs. Objective: The objective of the study is to investigate current disease management and quality of life (QoL) in PWHB in Spain and Portugal. Methods: Epidemiological, cross-sectional, multicenter study with moderately severe and severe PWHB. Sociodemographic, epidemiological, clinical, treatment, and QoL data were collected retrospectively over a 24-month period. Results: Of the 75 patients included in the study, 78.7% received prophylactic treatment and 21.3% on demand; 65.3% were treated with SHL-FIX and 10.7% with rIX-FP. Bleeding occurred in 81.3%, mainly in the form of spontaneous bleeding. Prophylaxis resulted in a lower annualized bleeding rate, better joint health, and better QoL, compared to on-demand treatments. Patients treated with rIX-FP throughout the study had better disease control and QoL than those treated with SHL-FIX. Conclusion: With the largest sample to date of PWHB from Spain and Portugal, our understanding of the management and impact of hemophilia B is broadened and, in accordance with previous evidence, it shows the benefits of prophylaxis and the advantages that the FIX extended half life products life FIX can offer.pt_PT
dc.description.versioninfo:eu-repo/semantics/publishedVersionpt_PT
dc.identifier.citationSangre (Eng). 2023;42(2):47-58pt_PT
dc.identifier.urihttp://hdl.handle.net/10400.17/4978
dc.language.isoengpt_PT
dc.peerreviewedyespt_PT
dc.publisherSociedad Española de Hematología y Hemoterapia.pt_PT
dc.subjectHemophilia Bpt_PT
dc.subjectEpidemiologic studiespt_PT
dc.subjectTreatment outcomept_PT
dc.subjectQuality of lifept_PT
dc.subjectSpainpt_PT
dc.subjectPortugalpt_PT
dc.subjectHDE HEM PEDpt_PT
dc.titleCross-Sectional Epidemiological Study to Understand the Approach to Treatment in the Routine Care of Patients with Hemophilia B in Spain and Portugalpt_PT
dc.title.alternativeEstudio Epidemiológico Transversal para Comprender el Abordaje del Tratamiento en la Atención Habitual de Pacientes con Hemofilia B en España y Portugalpt_PT
dc.typejournal article
dspace.entity.typePublication
oaire.citation.endPage58pt_PT
oaire.citation.issue2pt_PT
oaire.citation.startPage47pt_PT
oaire.citation.volume42pt_PT
rcaap.rightsopenAccesspt_PT
rcaap.typearticlept_PT

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