Background

Thalassemic patients have deteriorated quality of life, which affects their social status, leisure activities, ability to focus on task or series of task and relationships.

Objectives

The objective of this study is to find factors associated with health-related quality of life (HRQoL) that either hinder or augment the effectiveness of therapy in thalassemia patients in Pakistan.

Material and methods

A cross-sectional observational study was conducted among 178 children and adolescents with thalassemia in Lahore, Pakistan. The clinical characteristics of patients were recorded by checking medical records, and HRQoL was calculated using the PedsQL (Pediatric Quality of Life Inventory) scale.

Results

The average of the total summary score of the study population was 63.91 (SD: 15.52). For the subscales of the PedsQL score, it was revealed that the social functioning score was 10.24 (SD: 5.55), school functioning score was 10.66 (SD: 4.75), emotional functioning score was 10.68 (SD: 3.78), physical functioning score was 14.84 (SD: 15.52) and general health functioning score was 17.49 (SD: 3.15). It was shown that age, rural residence, as well as serum ferritin, urea and AST levels, were significantly associated with HRQoL. White blood cell count, red blood cell count, platelet count and alanine transaminase were not significant predictors of HRQoL.

Conclusions

Keeping in mind the current scenario in Pakistan, our study revealed that there is a need for improvement in thalassemia treatment management. For this, a modification of healthcare services can improve HRQoL, and thus improve the percentage of treatment outcomes in thalassemic patients.