Preventive care for adults with Down syndrome in Connecticut: a mixed-methods study

This study examined gaps in adherence to preventive care recommendations for adults with Down Syndrome (DS) in Connecticut and explored the underlying factors collecting caregiver and primary care physician (PCP) perspectives.

Primary healthcare plays a vital role in preventing health issues. Despite well-defined clinical guidelines for adults with DS, studies show gaps in preventive care delivery for this population.

A mixed-methods study included chart reviews, a focus group and a survey of PCPs. Chart reviews examined records of adults with DS who received care between January 1, 2017, and December 31, 2022, for adherence to recommended preventive services. The focus group explored caregivers' experiences with preventive care, and the survey assessed PCPs' knowledge of prevention needs for adults with DS.

Chart reviews of 241 adults with DS found low adherence to preventive care guidelines. Only 2.1% met the wellness visit benchmark, and 30.7% met the thyroid test benchmark. Themes from the caregiver focus group included challenges accessing care, clinicians' lack of DS-specific knowledge and difficulties maintaining health and wellness outside the office setting. Of 81 PCPs surveyed, most reported feeling inadequately prepared to care for adults with DS. Only 27% reported relevant training, and 53% were unaware of annual thyroid function test recommendations.

The study reveal gaps in preventive care for adults with DS and underlying reasons from a caregiver and provider perspective. Further analysis of care for adults with DS and targeted interventions will contribute to improved preventive care for this population.