Health monitoring of young children with Down syndrome: A parent-report study

Accessible summary Young children with Down syndrome often have serious health conditions, such as heart or thyroid problems. It is important that health professionals follow guidelines to make sure that these health conditions are diagnosed and treated. We asked parents of children with Down syndrome aged 0-5 years whether their child had received health care as set out in the guidelines. Parents reported that guidelines were mostly followed at birth and for diagnosed health conditions. Guidelines were less likely to be followed after birth and for checking for undiagnosed health conditions. Background Children with Down syndrome have an increased risk of serious health conditions, particularly in early childhood. Published guidelines promote the identification and monitoring of health issues and adherence could reduce health inequalities, yet there is limited research about the extent to which health monitoring occurs as recommended. This study aimed to investigate the health monitoring of children with Down syndrome aged 0-5 years in the UK. Materials and Methods Twenty-four parents of children with Down syndrome with a mean age of 32 months (10-65 months) participated. They completed a questionnaire about their child's healthcare usage, diagnoses of health conditions and whether health checks had been completed at birth and since birth. The results of the questionnaires were charted and compared to the schedule of checks produced by the Down Syndrome Medical Interest Group UK. Results Children with Down syndrome had high usage of health services and reported significant health issues. There was high adherence to published guidelines for the majority of health checks at birth, although 38% of children had not received all recommended checks. Not all health domains had been monitored since birth for all children, particularly breathing and blood (excluding thyroid). With the potential exception of sleep apnoea, diagnosed conditions appeared to be monitored. Conclusions This study suggests that health monitoring after birth and screening for nondiagnosed health conditions is variable for children with Down syndrome. Further research should examine convergence of these findings with medical records and clinicians' experiences across the UK.