Awareness among parents of children with thalassemia major.

OBJECTIVE To determine the awareness among parents of children with thalassaemia major (TM) regarding the disease. METHODS This (cross sectional) study was conducted at Paediatric OPD of Civil Hospital Karachi from May 2007 to October 2007. Parents of thalassaemic children presenting to out patient department, receiving blood transfusion from Patient Welfare Association (PWA) were interviewed using a pre designed questionnaire. Informed verbal consent was taken from the parents. Questions regarding duration of illness, awareness regarding screening of blood, mode of transmission of disease, prevention and treatment were asked. RESULTS A total of 120 care takers were questioned. Majority was of low socioeconomic class and 66.7% were illiterate. Although nearly 100% of the patients were receiving blood transfusions either from PWA or Hussaini blood bank or both, only 15.8% knew the importance of blood screening. Knowledge regarding desferrol was present in 55% of the patient's parents but only 10.9% were receiving it adequately. Only 15% knew that thalassaemia is an inherited disorder and family screening of the siblings and antenatal diagnosis in subsequent pregnancies was done in 5.8% and 5% respectively. CONCLUSION Awareness of parents regarding the disease was inadequate. General public and parents of thalassemic children should be sensitized in this regard.