Bothersome and Impactful Health Conditions in Children and Adolescents with Down Syndrome

Abstract

Objective

To summarize our results regarding how physical and mental health affect or bother children and adolescents with Down syndrome (DS) and to explore the relationship between impactful or bothersome items and participants’ overall health.

Study design

We surveyed caregivers of individuals aged 0-21 with DS about the aspects of physical health (including communication, hearing, vision, muscle tone, mobility, sleep, genitourinary concerns, and pain) and mental health (including behavior, self-talk, and problem solving) that bother and affect individuals with DS and summarized their responses. We compared the differences in sleep impacts between those with and without sleep apnea through chi square analysis. Spearman correlations were conducted to determine the association between our bother and impact items and total health scores on the DS health measure.

Result

We received 542 complete survey responses from a national sample. Physical and mental health impacted children and adolescents with DS at varied rates. Those with sleep apnea experienced negative impacts of sleep more frequently than those without. Thirty-four of our bother and impact items correlated significantly with total health scores.

Conclusions

Many factors influenced some children and adolescents with DS, but most were not highly impactful. Although the bothersome and impactful aspects of physical and mental health were variable in our cohort, many correlated with overall health.

Trial Registration

ClinicalTrials.gov: NCT04631237.