Primary care follow-up of newborns with sickle cell disease detected in neonatal screening in the Community of Madrid

Abstract Objectives The main aim of the study was to assess the effects of the recommended preventive programme in the population affected with sickle cell disease in primary care. The programme included, antibiotic prophylaxis, immunizations and health education, following the introduction of universal neonatal screening programme for sickle cell disease in the Community of Madrid. Patients and methods A cross-sectional observational study was performed with retrospective data collected from a cohort of newborns with sickle cell disease diagnosed by neonatal screening test in the Community of Madrid. Results From the data obtained from a sample of 20 patients, it was found that 95% had been diagnosed by the newborn screening test performed between 5 and 13 days of life. The mean age was 39 months when the study was conducted. During follow-up, from primary care paediatric clinic, it was observed that the compliance for antibiotic prophylaxis was 90%, and the coverage for the official vaccination schedule was 85%. Specific vaccine coverage as a risk population was highly variable (85% for pneumococcal 23 V, 50% for influenza, and 15% for hepatitis A). Health education only reached one in every four families. Conclusions Acceptable compliance with antibiotic prophylaxis was observed during the follow-up of patients with sickle cell disease in primary care, but a low coverage of routine immunisation, as well as specific immunisations. Coverage of health education was very low. Improving these parameters would require greater coordination and involvement of primary care professionals so that these patients were followed up appropriately, and could be translated into a reduction of disease complications and an improvement in the quality of life of these patients.