Nabir, Azie Jumaatul Adawiyah
(2017)
Health-related quality of life among haemophilia children in Hospital Universiti Sains Malaysia.
Masters thesis, Universiti Sains Malaysia.
Abstract
Background
Haemophilia is one of the most common genetic disorders in the world. It is caused by factor
VIII deficiency in haemophilia A and factor IX deficiency in haemophilia B. These factors are
important in human body coagulation system. Patients with these disorders are exposed to the
risk of excessive bleeding that occur either spontaneous or trauma. Thus, they would need
factor replacement therapy either as prophylactic therapy or on-demand need to reduce the
risk of any bleeding complication such as neurological abnormality post intracranial bleeding,
joint deformity, transfusion transmitted infection such as hepatitis B, C or HIV and even death.
As any other chronic illnesses, haemophilia does not only affect patient’s physical function but
also their emotional, psychosocial and school function. This research is aimed on evaluating
health-related quality of life among paediatric patients with haemophilia using translated and
validated questionnaire PedsQLTM 4.0 Generic Core Scale.
Objective
To study the health-related quality of life (HRQOL) among children with haemophilia who
received treatment in Hospital Universiti Sains Malaysia.
Methodology
This study involved all 12 haemophilia patients who received treatment or came for follow up
at Paediatric Clinic Hospital USM, Haemato-oncology ward Hospital USM until April 2017.
PedsQL TM 4.0 Generic Core Scale self-report and parents’ reports were used. Wilcoxonsigned-rank test was used to compare the level of each patient HRQOL from patient’s own
perspective and the caregiver’s perspective.
Results:
All twelve Haemophilia A patients in Hospital USM were male with median age of 16 years
old. Overall health-related quality of life of the haemophilia patient was good especially in
physical domain with score of 90 (83,99) and social domain with score of 90 (80,99).
Meanwhile, the lowest score was in school function domain with score of 68 (60,75) especially
in item of missed school during unwell and for hospital visit. Total median scored for healthrelated
quality of life reported by parents was lower compared with child self-report with score
of [81 (75,89), 75 (73,83), z score -2.09, p value 0.037]. Parents-proxy reported lower score
especially in emotional function domain [85 (76,94), 75 (58,85) z score -2.12, p value 0.034]
and social function domain [90 (80,94), 80 (71,89)) z score -1.98, p value 0.047].
Conclusion:
Health-related quality of life (HRQOL) among children with haemophilia that received
treatment in Hospital Universiti Sains Malaysia was good. Parents and child both agreed that
school function domain was affected due to missed school during unwell and for hospital visit.
Parents perceived differently on their child HRQOL especially in social and emotional function.
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