No difference in quality of life between persons with severe haemophilia A and B
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Introduction: 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. Aim: 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. Methods: 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). Results: 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, R2.22) and EQ VAS score (B -.37, R2.17). Conclusion: 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.
Originalsprog | Engelsk |
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Tidsskrift | Haemophilia |
Vol/bind | 29 |
Udgave nummer | 4 |
Sider (fra-til) | 987-996 |
Antal sider | 10 |
ISSN | 1351-8216 |
DOI | |
Status | Udgivet - 2023 |
Bibliografisk note
Funding Information:
The authors would like to thank the study participants who volunteered to enroll in the B‐NORD study. We are grateful to the research nurses, physiotherapists and physicians at the participating study centres who have contributed to the enrolment of patients and collection of data. The B‐NORD study was partially funded through an unrestricted research grant from CSL Behring, Stockholm, Sweden.
Publisher Copyright:
© 2023 The Authors. Haemophilia published by John Wiley & Sons Ltd.
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