Parents' opinion of quality of life (QOL) in Pakistani thalassaemic children.
OBJECTIVE
To find out the physical, social, psychological life aspects and overall quality of life among thalassaemic children in Pakistan.


METHODS
This cross-sectional study was done in ten Thalassaemia treatment centres in three major cities of Pakistan during the year 2007-08. The study population comprised of 221 thalassaemic children ranging from 4 to 12 years age brought for blood transfusion by their parents. All ethical considerations were taken into account during the study. Questions related to physical, social and psychological aspects that assess quality of life (QOL) of children with thalassaemia were asked and were further analyzed using SPSS version 12.0.


RESULTS
Out of total 221 thalassaemic patients surveyed, the majority (61%) were boys with a mean age of 8.5 +/- 2.26 years for both sexes. An overwhelming majority of parents (86%) felt that the disease did not affect the child's family or social relationships. However, poorer quality of life (QOL) was found against psychological aspects (p < 0.05) and overall parent satisfaction for child's health (p < 0.001). Adverse impact of thalassaemia was also found for pain (73%), sleep (50%), eating habits (49%), leisure activities (54%) and task concentration (51%) among the participants.


CONCLUSIONS
There was a substantial amount of concern raised by the parents for various aspects of QoL in their affected children. Hence, it is crucial to provide proper health education to parents for better understanding of the disease and rehabilitation of their thalassaemic children.
Hamdard College of Medicine & Dentistry, Karachi.
Syed Ali
SA
Ammad
Syed Muhammad
SM
Mubeen
Syed Faraz Ul Hassan
SF
Shah
Salman
S
Mansoor
D002648:Child; D002675:Child, Preschool; D003430:Cross-Sectional Studies; D005190:Family; D005260:Female; D006801:Humans; D008297:Male; D010154:Pakistan; D010290:Parents; D011788:Quality of Life; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D013789:Thalassemia / Q000175:diagnosis / Q000503:physiopathology* / Q000523:psychology*