A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka
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A nationwide survey of hospital-based thalassemia patients and standards of care and a preliminary assessment of the national prevention program in Sri Lanka
Objectives
Our aim was to describe the numbers and distribution of patients with different types of thalassemia
and to assess the standards of care in all thalassemia treatment centers throughout
Sri Lanka and the success of the ongoing prevention programme.
Methods
This cross-sectional island-wide survey was conducted by two trained medical graduates,
who visited each thalassemia center to collect data from every patient, using a standardized
form. Data was collected through review of patient registers and clinical records.
Results
We collected data on 1774 patients from 23 centers. 1219 patients (68.7%) had homozygous
β-thalassemia, 360 patients (20.3%) had hemoglobin E β-thalassemia, and 50 patients (2%) had sickle β-thalassemia. There were unacceptably high serum ferritin levels in almost
all centers. The annual number of births of patients with β-thalassaemia varied between 45–
55, with little evidence of reduction over 19 years.
Conclusions
Central coordination of the treatment and ultimately prevention of thalassemia is urgently
needed in Sri Lanka. Development of expert centers with designated staff with sufficient
resources will improve the quality of care and is preferred to managing patients in multiple
small units.