J Haem Pract 2014; 2(1):J Haem Pract 2015; 2(1): 20-26. doi: 10.17225/jhp00043

Authors: Sylvia von Mackensen, Karin Lindvall, Sölve Elmståhl, Erik Berntorp

Sylvia von Mackensen
Institute of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Martinistrsse 52, 20246 Hamburg, Germany. Email:

Karin Lindvall
Lund University, Malmö Centre for Thrombosis and Haemostasis, Malmö, Sweden.

Sölve Elmståhl
Department of Health Sciences, Division of Geriatric Medicine, Lund University, Malmo, Sweden.

Erik Berntorp
Lund University, Malmö Centre for Thrombosis and Haemostasis, Malmö, Sweden.


Assessment of health-related quality of life (HRQoL) in haemophilia is important in order to provide information for clinical decision-making and to verify the impact of haemophilia on patients and their partners. A cross-sectional single-centre study was performed to assess the health-related quality of life (HRQoL) and burden of the disease on partners of adult patients with haemophilia.
Self-reported outcomes were completed by partners and patients (SF-36, VAS of Interference); partners also completed the Caregivers’ Burden Scale.
A total of 108 of 150 eligible partners of adults with haemophilia (72%) participated. Mean age for partners was 44.7 years (range 20-79) and for patients 47.1 years (range 20-81). The majority of couples were married (65.7%). Couples reported being together a mean of 19.8 years and had, on average, 1.7 children. Partners of haemophilia patients across all severities reported lower HRQoL in the ‘emotional role’ domain of SF-36 (P=<0.001). In general, partners reported low burden of haemophilia in the Caregivers’ Burden Scale; ‘emotional involvement’ was the greatest burden in the mild and moderate group; while in the severe group ‘general strain’ was the greatest burden.
Partners of severe haemophilia patients on prophylaxis reported, in general, good HRQoL and low burden of the disease. Partners of moderate patients reported decreased HRQoL and higher burden. Our findings may be of importance for the care of the ageing person with haemophilia (PWH).


This study was supported with funds from Baxter Nordic, Sweden, The Arosenius Fund and regional fund (ALF).


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