血液学および血栓塞栓性疾患ジャーナル
オープンアクセス

概要

The Compromised Quality of Life in β-Thalassemia Major Children in Non- Urban Setup in a Developing Country

Jameel T, Suliman IM, Rehman D

Background: Thalassemia is a chronic autosomal recessive disorder, resulting in ineffective blood formation and chronic hemolytic anemia. Patient of beta thalassemia major is exposed to multiple stresses including multiple transfusions, exposure to hepatitis B and C viruses and multiple psychological and metabolic problems. Assessment was carried out in the form of a survey to find out extent of problems and the measures to improve the quality of life of these patients. Objectives: To determine the problems faced by thalassemic children and highlight their personal, social and psychological affect so as to assess their quality of life.

Methods and Study Design: A cross sectional study was carried out in Day care Thalassemia center. 50 children aging 7-18 years were enrolled. After recording the subject's demographic and disease details a survey based of SF-36 questionnaire was filled. The correlation with demographic and clinical parameter was evaluated.

Results: A total of 50 patients with the mean age of 15 ± 34 with the distribution of 35 males and 15 females from urban cum rural areas were analyzed. Majority of them were either illiterate or under primary education (92%). All of them were transfusion dependent. Consanguinity of parents was mentioned in 88% of patients. Females secured low scores as compared to males in almost all the parameters. Poor socioeconomic status, non-compliance and presence of multiple complications determined the low scoring in SF-36.

Conclusions: The quality of life in our cohort was found to be compromised and low due to multiple factors such as low family income, bigger families, repeated episodes of illness and anemia. The management can be improved if psychological and financial support is available for the patients