Psychosocial Problems Faced by Thalassemia Patients and their Parents

Abstract

Introduction

Thalassemia is one of the most highly prevalent autosomal recessive diseases worldwide [23]. The prevalence of the disease in the Mediterranean, Middle East and Central Asia ranges from 2% to 25% [24]. Pakistan is considered as one of the highest thalassemia burden countries in the world. In Pakistan, the estimated carrier rate of thalassemia is 5-8% with 9.8 million carriers in the whole population and every year 5000 thalassemia major children are born [25].

Thalassemia major patients require repeated transfusion of blood and iron chelation therapy for their survival which is continuous source of distress for thalassemia major patients and their parents [28,29]. Up to 80% of thalassemia children are likely to have psychosocial problems [30,31]. Increased anxiety, depression, social withdrawal, aggression, poor relationships and poor school performance are among common psychosocial burden experienced by thalassemia patients [32,22].