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. 2023 Mar;29(2):538-544.
doi: 10.1111/hae.14751. Epub 2023 Feb 2.

Health and quality of life of patients with haemophilia: A national study of 124 Danish men

Christina Schnohr  1 , Ola Ekholm  2 , Lone Hvitfeldt Poulsen  3 , Lars Lehrmann  4 , Terkel Andersen  4 , Eva Funding  5   6 , Karen Binger Holm  4 , Jakob Bue Bjorner  1
Affiliations

Health and quality of life of patients with haemophilia: A national study of 124 Danish men

Christina Schnohr et al. Haemophilia. 2023 Mar.

Abstract

Purpose: In the past decades, haemophilia treatment has greatly improved the health of persons with haemophilia (PWH). This study compares PWH to the general population on social conditions and health.

Methods: In December 2021, all Danes with moderate or severe haemophilia A or B, or von Willebrands disease type 3 were invited to participate in an online self-report survey concerning sociodemographic factors, self-rated health, teeth status, chronic health conditions, symptoms and loneliness. This study compares responses from the 124 adult male PWH with responses from a male general population sample (N = 4849). Analyses used logistic regression, controlling for age and highest completed education.

Results: Fewer PWH were in the oldest age group (65-84 years). Controlling for age, no significant differences were found regarding cohabitation status or education. Fewer PWH were employed (OR = .48, [.33-.71])-particularly in the 45-64 age group. PWH were less likely to report good health (OR = .49, [.31-.77]). The odds of joint disease was much higher (OR = 13.00, [8.37-20.28]). Also, hypertension (OR = 2.25, [1.13-5.65]) and previous stroke (OR = 2.51, [1.44-3.50]) were more frequent. PWH were more likely to report pain in the arms/hands/legs/hips (OR = 2.94, [1.92-4.52]), but less likely to report pain in the head/neck/shoulder (OR = .66, [.45-.96]).

Conclusion: The disease burden of haemophilia has improved so PWH resembles the general population in areas such as marriage and education. However, even for young PWH, the disease still imposes a significant burden from hemophilia arthropathy and pain in extremities and joints. Middle-aged PWH also have poorer levels of employment than same-aged peers.

Keywords: haemophilia; quality of life; questionnaire.

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