No difference in quality of life between persons with severe haemophilia A and B.
EQ-5D
arthropathy
coagulation factor IX
haemophilia A
haemophilia B
quality of life
Journal
Haemophilia : the official journal of the World Federation of Hemophilia
ISSN: 1365-2516
Titre abrégé: Haemophilia
Pays: England
ID NLM: 9442916
Informations de publication
Date de publication:
Jul 2023
Jul 2023
Historique:
revised:
24
01
2023
received:
12
12
2022
accepted:
29
01
2023
medline:
21
7
2023
pubmed:
16
2
2023
entrez:
15
2
2023
Statut:
ppublish
Résumé
Good health-related quality of life (HRQoL) is an important goal in the treatment of persons with haemophilia B (PwHB). Studies focusing on this population are limited, however, and data are insufficient. To assess the HRQoL in PwHB and to compare this to data on persons with haemophilia A (PwHA), as well as to evaluate the impact of joint health on HRQoL and to identify areas of insufficient care. The B-NORD study enrolled persons with severe haemophilia B and matched controls with haemophilia A. HRQoL was assessed using the EQ-5D-3L questionnaire and joint health using Haemophilia Joint Health Score 2.1 (HJHS). The EQ-5D-3L was completed by 63 PwHB and 63 PwHA. Mobility problems were reported by 46% of PwHB and 44% of PwHA, pain/discomfort by 62% and 56%, and anxiety/depression by 33% and 17%, respectively. No significant difference was observed between PwHA and PwHB in EQ-5D profiles, level sum score, EQ-5D index (PwHB mean .80, PwHA mean .83, p = .24), or EQ VAS score (PwHB: mean 70, PwHA: mean 77, p = .061). Linear regression adjusted for age demonstrated that an increase in HJHS score was associated with a significant decrease in both EQ-5D index (B -.003, R Despite the majority of patients being treated with prophylaxis, impaired HRQoL was reported in both PwHB and PwHA. No differences in HRQoL were found between the two groups. Impaired joint health had a significant negative impact on HRQoL.
Substances chimiques
6-S-hexadecyl-2-methoxythioascorbic acid
8065-53-0
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
987-996Subventions
Organisme : CSL Behring, Stockholm, Sweden
Informations de copyright
© 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.
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