J Haem Pract 2017; 4(1). doi: 10.17225/jhp00094

Authors: Kate Khair, Sylvia von Mackenson

Kate Khair
Nurse Consultant
Haemophilia Centre, Great Ormond Street Hospital for Children NHS Foundation Trust, London WC1N 3JH, UK. Email:

Sylvia von Mackenson
Institute and Policlinics of Medical Psychology, University Medical Centre Hamburg-Eppendorf, Martinistrasse 52, 20246 Hamburg, Germany.


Haemophilia caregivers face limitations in their life leading to perceived burden. This single-centre study investigates the impact of burden on caregivers’ health-related quality of life (HRQoL).
Methods: Questionnaires for caregivers comprised demographic data, HRQoL (EQ-5D, SF-36) and caregiver burden (IOF: Impact on Family Scale). Children were also asked about their HRQoL (EQ-5D, Haemo-QoL Short Form).
Results: 20 consecutive parent/child dyads participated. 80% were mothers (mean age of 39.80±6.2 years) with 1-3 haemophilic children aged 8-17 years and 2.5±1.2 children <0.024) of the SF-36. Caregivers who reported that haemophilia had an economic impact on their family and those with a chronic disease showed significant higher impairments in caregiver burden and their HRQoL.
Conclusions: The perceived burden of haemophilia has a direct impact on caregivers’ HRQoL. Further studies with haemophilia-specific instruments are needed to verify these findings.


KK and SvM received an unrestricted educational grant for the conduct of the study by Baxalta.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
We would like to thank the parents who participated in this study for donating their time so willingly.


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