Quality of assistance provided to children with sickle cell disease by primary healthcare services

OBJECTIVE To evaluate the quality of healthcare provided to sickle cell disease children by primary healthcare services in a region of high prevalence. METHODS A cross-sectional, descriptive study was performed by interviewing members of families with sickle cell disease children. The children had been identified from the Neonatal Screening Program in Minas Gerais state over the last 12 years in towns of the Montes Claros-Bocaiuva microregion. A structured questionnaire specially developed for this study and based on three axes was used: indicators of the child's health (immunization, growth and development, prophylaxis antibiotic therapy), perception of care by the family (health education and accessibility) and knowledge of the family about the disease. RESULTS Sixty-three of 71 families with children identified as having sickle cell disease were interviewed. The predominant genotypes were Hb SS (44.4%) and Hb SC (41.2%). Adequate monitoring of growth and development was recorded for the first year of life in 23 children (36.6%) and for the second year of life in 18 children (28.6%). The basic vaccination schedule was completed by 44 children (69.8%) but 62 vaccination record cards (98.4%) identified delays of special vaccines. Regular use of prophylactic penicillin was reported by 55 caregivers (87.3%). The family's perception of the care provided suggests poor accessibility to health services and lack of opportunities to answer doubts. The average performance of families in knowledge testing was 59.8%. CONCLUSION The quality of healthcare is unsatisfactory. The care provided to children with sickle cell disease in primary healthcare services needs improvements.