Assessment of quality of life in Thalassemia major
Sachdeva, A.; Yadav, S.P.; Berry, A.M.; Kaul, D. and Khanna, V.K. (2002) Assessment of quality of life in Thalassemia major. Presented at International Journal of Hematology 2002 '76(SI) :4, 76. 4.
Full text available as:
Aim: Children with thalassemia major have good survival but little is known about their quality of life. We assessed Health Related Quality of Life in these children. Method: Quality of life was assessed of 26 children (average age 16 yr±5.5) with thalassemia major on regular blood transfusion, registered with Thalassemia unit at Sir Ganga Ram Hospital by using an 85-item Thalassemia Quality of life questionnaire. This questionnaire was developed by modifying Pediatric Cancer Quality of life scale developed by Varni et al covering five domains - disease and symptoms, physical, psychological, social and cognitive fields. Both desired and present quality of life assessed by patient's response in each domain. Overall Quality of Life given as percentage of desired quality of life score. Result: Overall quality of life (QOL) was affected (<90%) in 88% of patients and severely affected (<70%) in only 15% of patients. QOL assessed in each domain showed that in disease and symptom domain 96% had QOL<90%, in physical domain 70% had QOL<90%, in psychological domain 81% had QOL<90%, in social domain 81% had QOL <90% and in cognitive domain 65% had QOL<90% Conclusions: QOL for each child was given as a summary score between 0% (worst QOL) and 100% (best possible QOL). Each child himself acted as a control for his best possible QOL i.e. desired at that point of life according to his understanding and development. This concept can be very useful for serial assessment of QOL of child with Thalassemia major and interventions can be done in various domains to improve QOL
Archive Staff Only: edit this record