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No difference in quality of life between persons with severe haemophilia A and B

Kihlberg, Kristina LU ; Baghaei, Fariba ; Bruzelius, Maria ; Funding, Eva LU ; Andre Holme, Pål ; Lassila, Riitta ; Nummi, Vuokko LU ; Ranta, Susanna ; Gretenkort Andersson, Nadine LU and Berntorp, Erik LU , et al. (2023) In Haemophilia 29(4). p.987-996
Abstract

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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
keywords
arthropathy, coagulation factor IX, EQ-5D, haemophilia A, haemophilia B, quality of life
in
Haemophilia
volume
29
issue
4
pages
987 - 996
publisher
Wiley-Blackwell
external identifiers
  • scopus:85148352692
  • pmid:36791275
ISSN
1351-8216
DOI
10.1111/hae.14759
language
English
LU publication?
yes
id
80baefbb-b32b-42a3-8a4e-483a150a9b6f
date added to LUP
2023-03-08 08:51:36
date last changed
2024-06-13 13:13:24
@article{80baefbb-b32b-42a3-8a4e-483a150a9b6f,
  abstract     = {{<p>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, R<sub>2</sub>.22) and EQ VAS score (B -.37, R<sub>2</sub>.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.</p>}},
  author       = {{Kihlberg, Kristina and Baghaei, Fariba and Bruzelius, Maria and Funding, Eva and Andre Holme, Pål and Lassila, Riitta and Nummi, Vuokko and Ranta, Susanna and Gretenkort Andersson, Nadine and Berntorp, Erik and Astermark, Jan}},
  issn         = {{1351-8216}},
  keywords     = {{arthropathy; coagulation factor IX; EQ-5D; haemophilia A; haemophilia B; quality of life}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{987--996}},
  publisher    = {{Wiley-Blackwell}},
  series       = {{Haemophilia}},
  title        = {{No difference in quality of life between persons with severe haemophilia A and B}},
  url          = {{http://dx.doi.org/10.1111/hae.14759}},
  doi          = {{10.1111/hae.14759}},
  volume       = {{29}},
  year         = {{2023}},
}