Parental Awareness about Medical Comorbidities and their Recommended Evaluations in Children with Down Syndrome: A Pilot Survey

Abstract

Down syndrome is associated with multiple comorbidities like growth delays, eye abnormalities, cardiovascular complications etc. They can be screened to detect early and can be intervened at an appropriate age. Professional organizations and other parents’ support group can work towards streamlining the screening protocol and raising awareness.
 Aim: To study the awareness about these comorbid conditions and their evaluations among parents of children with Down syndrome.
 Methods: A cross section questionnaire-based study pilot survey was conducted after taking due consent from the parents. It contained questions regarding whether the parents were aware of the increased risk in different organ systems and whether they knew the recommended timeline for screening.
 Results: More than 90 percent of mothers were below the age of 35 years at the time of conception. More than half the parents knew about growth delays, eye, thyroid, cardiovascular complications. Less than 50% had awareness about DS specific growth charts, or the annual thyroid evaluations, while none knew the upper age limit to complete polysomnography evaluation.
 Conclusion: A majority of parents had varying degrees of awareness regarding the different comorbidities, type of evaluations to be done and the recommended timelines to screen for these conditions.