Haemophilia. 2019;1–6. wileyonlinelibrary.com/journal/hae
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1 © 2019 John Wiley & Sons Ltd
1 | INTRODUCTION
Although many studies of the impact of haemophilia on the health‐
related quality of life (HRQoL) and social status were conducted
all over the world,
1
specific data pertaining to Lebanese persons
with haemophilia (PWH) are lacking. PWH are at risk of bleeding,
especially in the joints, haemophilic arthropathy being the main
comorbidity in adult patients who did receive adequate treatment
during childhood.
2,3
These complications must be properly managed
as they can aggravate the impact of their illness on the physical and
psychosocial level and consequently affect their HRQoL.
4,5
The first
specific antihaemophilia treatment was introduced in Lebanon in
1996, so the majority of our adult PWH population could not ben‐
efit from adequate treatment. Some studies around the world have
Received: 1 December 2018
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Revised: 14 January 2019
|
Accepted: 14 January 2019
DOI: 10.1111/hae.13694
ORIGINAL ARTICLE
The impact of haemophilia on the social status and the
health‐related quality of life in adult Lebanese persons with
haemophilia
Elie Naous
1,2
| Philippe de Moerloose
3
| Ghassan Sleilaty
1
| Alessandro Casini
3
|
Claudia Djambas Khayat
1,2
1
Hotel Dieu de France Hospital, Saint Joseph
University, Beirut, Lebanon
2
Lebanese Association of Hemophilia, Jal El
Dib, Lebanon
3
Division of Angiology and
Haemostasis, University Hospitals and
Faculty of Medicine, Geneva, Switzerland
Correspondence
Elie Naous, Hotel Dieu de France Hospital,
Saint Joseph University, Beirut, Lebanon.
Email: elie-naous@hotmail.com
Introduction: Health‐related quality of life (HRQoL) studies are increasingly needed
to prevent and improve the medical care of persons with haemophilia (PWH).
Aim: We assessed the impact of haemophilia on HRQoL and social status of adult
Lebanese PWH compared to a reference population.
Methods: In this case‐control study, 60 severe and moderate PWH were compared
to 112 healthy controls. Detailed socio‐demographic data and disease characteristics
were collected, and HRQoL was assessed using the SF‐36 questionnaire.
Results: Age, body mass index and the percentage of married people were similar in
PWH and controls. A greater proportion of controls attained a higher educational level
than cases (88.4% vs 59.3%, respectively, P < 0.001). PWH were more likely to have a
job requiring physical activity than controls (55.9% vs 31.4%) and more likely to be
unemployed (10.2% vs 1.0%), whereas more controls had higher socio‐economic jobs
(10.5% vs 1.7%). PWH had significantly (P < 0.001) worse scores in all SF‐36 domains
except for energy/fatigue. Affected targeted joints (2.7 ± 1.5) and monthly bleeding
frequency (2.9 ± 2.4) were inversely correlated with almost all SF‐36 domains. Only
26.7% of PWH walk normally, and walking abnormalities were inversely correlated
with all SF‐36 domains except role‐emotional and emotional well‐being.
Conclusion: As compared with controls, the majority of Lebanese PWH has difficulties
in social integration, has severe physical limitations and psychological impairments.
KEYWORDS
education, haemophilia, Lebanon, quality of life, sexuality, SF‐36 questionnaire