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

Author:

Schnohr Christina1,Ekholm Ola2,Poulsen Lone Hvitfeldt3,Lehrmann Lars4,Andersen Terkel4,Funding Eva56,Holm Karen Binger4,Bjorner Jakob Bue1

Affiliation:

1. Department of Public Health University of Copenhagen Copenhagen Denmark

2. National Institute of Public Health Copenhagen Denmark

3. Centre for Haemophilia and Thrombosis Aarhus University Aarhus Denmark

4. The Danish Hemophilia Society Copenhagen Denmark

5. Department of Haematology Rigshospitalet Copenhagen Denmark

6. Institute of Clinical Medicine University of Copenhagen Copenhagen Denmark

Abstract

AbstractPurposeIn 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.MethodsIn 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.ResultsFewer 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]).ConclusionThe 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.

Funder

Bayer

CSL Behring

Novo Nordisk

Pfizer

Roche

Swedish Orphan Biovitrum

Publisher

Wiley

Subject

Genetics (clinical),Hematology,General Medicine

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