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

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 selfreport 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,). Also, hypertension (OR = 2.25,) 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,). 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.

Analysis of single-center Hemophilia A patients :demographics, clinical characteristics and treatment strategies

“…Our ndings demonstrate the actual status of HA patients, including singleness, low employment and low educational attainment, as shown in Table 1, and are more likely to be associated with nancial burden and physical disability. However, a Danish study showed that by controlling for age differences, no signi cant differences were found in education and marital levels between PWH and the general population, and employment rates for PWH were signi cantly lower in 45-64 year olds than in their peers of the same age, but no differences were found in the younger (16-44 year old) group [7]. This may be because our analysis is for all age groups, and there is still a degree of wealth disparity in our large population.…”

The good, the bad and the ugly of pain in haemophilia: Recent evidence on the epidemiology, molecular mechanisms and knowledge gaps preventing optimal treatment

“…49 Some encouraging data arose from a self-reported survey comparing Danish PWH from 16 to 84 years of age versus the Danish general population on selected indicators of HRQoL, which revealed that PWH now resembles the general population in areas such as marriage and education compared with earlier surveys. 50 However, even for young PWH, the disease still imposes poorer levels of employment compared with the general population and a significant burden from arthropathy and pain in extremities and joints.…”