Quality of life in patients with thalassemia major

BACKGROUND: With modern medical management, thalassemia major is now extending into adulthood and it is expected to have a negative impact on the quality of life (QOL) of the patients. The aim of this study was to evaluate quality of life in patients with thalassemia major. MATERIALS AND METHODS: This is an analytic case control study. Two hundred and fifty patients and 51 participants as controls were assessed using WHOQOL- BREF (Farsi version) questionnaire. All questions were answered based on the self-evaluated status in the past 2 weeks before enrollment and were rated on a five-point Likert scale. Therefore, the raw item score ranged from 1 to 5 and scaled in a positive direction and 6 dimensions including overall QOL, overall health, physical, psychological, social, and environmental relationship were assessed. RESULTS: Results showed that the QOL in all 6 dimensions was lower in patients compared to the controls (P< 0.05).Also age, higher education level, lower ferritin level and using oral iron chelator were associated with better QOL scores. On the other hand, cardiac disease, hepatitis C and history of psychiatric disorders were associated with impaired QOL scores. CONCLUSION: These findings were important for future refinement of national thalassemia program. So, we recommended regular screening for psychiatric disorders and facilitated access to oral iron chelators. Regular monitoring and treatment of complications especially cardiac disease and hepatitis along with strict quality control of blood products were also mandatory. Also, higher education of the patients may improve quality of life.