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 ß-thalassemia, 360 patients (20.3%) had hemoglobin E ß-thalassemia, and 50 patients (2%) had sickle ß-thalassemia. There were unacceptably high serum ferritin levels in almost all centers. The annual number of births of patients with ß-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.

Preconceptional care of women at booking visit at De Soysa Maternity Hospital and Castle Street Hospital for Women.

OBJECTIVE: To study the preconceptional preparedness of women attending two antenatal clinics. DESIGN: Cross-sectional descriptive study done in August and September 2001. SUBJECTS AND SETTING: Pregnant women attending the antenatal clinics De Soysa Maternity Hospital and Castle Street Hospital for Women for their booking visit. MATERIAL AND METHODS: Pregnant women were randomly selected. Before collecting data the purpose of the study was explained and those who consented were recruited for the study. Data were collected on the basis of an interviewer administered questionnaire. Ethical approval was obtained from the Ethical Review Committee of the Faculty of Medicine, University of Colombo. RESULTS: 225 pregnant women were recruited. 55% of them were between the ages of 18 and 30 years. 96% had achieved an educational level of above year five. 55% were in their first pregnancy and 2.75 were grand-multipara. 186 (82.7%) were housewives. 81% had a planned pregnancy. Only 21% had received pre-pregnancy counselling, 52% of them from a specialist obstetrician, and 21% and 19% from a general practitioner and public health midwife. Only 15 (6.6%) had taken preconceptional folic acid supplementation, and all of them had a level of education of GCE (A/L) or above. 11 of those who took preconceptional folic acid were primipara. 159 (70.6%) had received rubella vaccination. Of those who did not take the vaccine, 44% knew about it but did not know its importance, and 38% did not know about its availability. 18% did not take it because of various myths that they believed in. Preconceptional health knowledge regarding pregnancy was assessed by asking 10 questions and expressing it as a score out of 10. This score showed a positive correlation to the level of education of the woman. A majority received information from the print (81.7%) and electronic (72.4%) media. 50% received information from a public health midwife, and 36% from doctors. CONCLUSIONS: Preconceptional preparedness among our women is poor. However, rubella vaccination is relatively successful compared to other aspects of preconceptional preparedness.