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Objective: To determine the impact of beta thalassaemia major on health related quality of life in terms of physical and psychosocial aspects of thalassaemia children and to compare their perception on quality of life with their parents’ perception.
Duration and Place of Study: Thalassaemia centre Sir Ganga Ram Hospital, Lahore from July 2014 to December 2014.
Study Design: Cross sectional study
Methodology: Diagnosed cases of beta thalassaemia major aged 2-18 years on regular blood transfusion and their parents were included in the study. Patients with beta thalassaemia minor and intermedia, alpha thalassaemia and other haemoglobinopathies were excluded from the study. PedsQLTM 4.0 generic core scale questionnaire translated into Urdu was used with permission of MAPI Research Institute, Lyon, France.
Results: Total 266 patients of 2-18 years of age and their parents were recruited. Male children and adolescents were 169 (63%) and 97(37%) were female. Their mean age at diagnosis of beta thalassaemia major was 10.43±12.02 months. Children receiving one blood transfusion per month were 129 (49%) while 137 (51%) were receiving two or more than two blood transfusions per month. In general, Parents reported lower PedsQL 4.0 score as compare to their thalassaemic children. Psychosocial health summary score was 75.37± 25.79 versus 70.73 ± 23.16 with pvalue 0.04. Mean score for emotional functioning was 75.38 ±28.89 versus 67.31± 23.51 (p= 0.00). No significant association of age, gender and number of blood transfusion was found on perception of health related quality of life.
Conclusion: Beta thalassemia major impairs patient’s health related quality of life regarding physical and psychosocial aspects. Parents scored lower as compare to their children at psychosocial and emotional health parameters.
Rashida Sultana, Shamsa Humayun, Tehmina Noor, Sara Humayun, Ummarah Zafar. (2016) Impact of Thalassaemia on Quality of Life, Journal of the Society of Obstetrics and Gynaecologists of Pakistan , Volume-06, Issue-4.
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