Penicillin prophylaxis in children with sickle cell disease in Brent.

OBJECTIVE To assess compliance with oral penicillin prophylaxis in children with sickle cell disease and identify possible reasons for poor compliance. DESIGN Closed questionnaires given to parents of children with sickle cell disease and general practitioners in Brent. Urine samples from 23 children were tested for penicillin. SETTING Paediatric haematology clinic, Central Middlesex Hospital, and general practices in Brent. SUBJECTS 50 children (aged less than or equal to 16) attending clinic with sickle cell disease over six months (33 HbSS, 12 HbSC, five HbS beta thalassaemia). 30 general practitioners: 15 with the greatest number of patients with sickle cell disease on the Brent register; 15 selected randomly from family practitioner committee's list. MAIN OUTCOME MEASURES Reported compliance with and awareness of importance of penicillin prophylaxis. Results of urine tests for penicillin. RESULTS 31 parents claimed that their children received penicillin every day and 19 that they received it most days (greater than or equal to 5 days a week). Penicillin was detected in only 10 of 23 urine samples tested. Parents and doctors seemed not to appreciate the importance of treatment: only eight parents were aware of the risk of death if penicillin were discontinued, and 16 doctors were unaware that regular penicillin prophylaxis prevents pneumococcal septicaemia and death in these children. CONCLUSIONS Education for families with children with sickle cell disease must be improved. Specialised information and training are needed for doctors working in areas with a high prevalence of the disorder.