Adherence to preventive health care in children and young adults with Down syndrome (DS) in Sri Lanka

Objectives To assess adherence to preventive care and age-appropriate screening in different age categories of Down syndrome (DS) persons. Methods This community-based retrospective observational study on ambulatory persons with DS from different regions of Sri Lanka was carried out on 100 randomly selected individuals from a sample framework of approximately 300. Their screening behavior for cardiac, ophthalmic, hearing and thyroid status was evaluated. Age at first medical consultation for DS specific complications, whether undertaken when symptomatic or asymptomatic, and use of DS-specific growth charts were extracted from medical records. Screening was compared in three age groups (<10, 10-15, and >15 years). Results One hundred clinically diagnosed DS individuals (F: M 1: 1.2) aged 2-28 years (mean 13.5 years) were from varied socio-economic backgrounds and rural (68%) suburban (20%) and urban (12%) settings. They all had had postnatal medical assessments. Initial eye, ENT, cardiac consultations was at significantly earlier ages in those below 10 years. Age-appropriate cardiac assessments occurred in 58%, 25% and 7.5% in each age group. Vision, hearing and newborn thyroid status were not routinely screened for. Only 7% had special growth charts. Area of residence had no effect on screening behavior. Conclusions Screening for complications in DS was delayed and inconsistent but occurred at significantly earlier ages in younger children. Use of appropriate growth charts was very low. Screening behavior was unaffected by area of residence. We recommend incorporating DS-specific medical checklists as a preventive health routine for this unique group of children.