• Download Summary
• Español (pdf)
• Audio Recording (mp3)

What was the research about?

Down syndrome is a genetic condition that affects cognitive ability and physical features. People with Down syndrome often have other health problems. Clinics that specialize in Down syndrome help people get recommended care for these problems, such as eye exams or sleep studies. But not all people with Down syndrome have access to these clinics.

In this study, the research team tested a web-based platform for caregivers to help people with Down syndrome get personal wellness recommendations. The team looked at the use of five services: eye and hearing exams, screenings for sleep apnea and celiac disease, and a thyroid function test. The platform, called Down Syndrome Clinic to You, or DSC2U,

• Collects health history and current symptoms
• Creates personalized checklists for caregivers
• Creates reports of recommended services based on medical guidelines that caregivers can share with their primary care providers, or PCPs 

The research team compared caregivers who were offered DSC2U with caregivers who got usual care.

What were the results?

After seven months, compared with usual care, caregivers who were offered DSC2U reported a 1.6-times increase in the number of indicated services completed or recommended. Quality of life for caregivers of people with Down Syndrome didn’t differ between caregivers who were offered DSC2U and those who got usual care.

Caregivers and PCPs reported high satisfaction with DSC2U.

Who was in the study?

The study included 230 caregivers with a child or adult dependent with Down syndrome. Of the caregivers, 91 percent were white, 5 percent were black, 2 percent were more than one race, and 1 percent were Asian; 11 percent were Hispanic or Latino. The average age was 47, and 96 percent were women. Among people with Down syndrome, the average age was 12, and 54 percent were boys. Families lived in areas not served by a Down syndrome clinic.

What did the research team do?

The research team assigned caregivers by chance to use DSC2U or not.

Caregivers completed surveys at the start of the study and two and seven months after a well visit with the local PCP. The survey asked about whether the person with Down syndrome got the indicated recommendations or services. It also asked about quality of life and satisfaction with DSC2U. Two weeks after the well visit, PCPs reported on their satisfaction with DSC2U.

Caregivers, PCPs, and others with expertise in Down syndrome helped plan the study and design DSC2U.

What were the limits of the study?

Most caregivers in the study were white and had college degrees. Findings may differ for caregivers from other backgrounds.

Future research could test DSC2U with people from other backgrounds.

How can people use the results?

Caregivers and PCPs can use the platform to improve health screenings for people with Down syndrome.

Objective

To determine whether a web-based platform for caregivers, called Down Syndrome Clinic to You (DSC2U), increases adherence to preventive screenings recommended for people with Down syndrome compared with usual care

Study Design

This randomized controlled trial compared the effect of DSC2U versus usual care on adherence to five nationally recommended healthcare assessments for people with Down syndrome: ophthalmologic and auditory evaluations, obstructive sleep apnea and celiac disease screening, and thyroid function testing.

Researchers randomly assigned caregivers to use DSC2U or receive usual care from their primary care providers (PCPs). DSC2U collected caregiver-reported patient data, including current symptoms and past medical history. DSC2U also generated a personalized caregiver checklist and a plan for the PCP, both of which recommended healthcare assessments based on individual needs. Recommendations were based on Down syndrome guidelines from national sources, including the American Academy of Pediatrics.

The study included 230 caregivers with a dependent child or adult with Down syndrome who lived in areas not served by a clinic that specializes in Down syndrome. Of the caregivers, 91% were white, 5% were black, 2% were more than one race, and 1% were Asian; 11% were Hispanic or Latino. The average caregiver age was 47, and 96% were female. The average age of the people with Down syndrome was 12, and 54% were male.

At baseline and again two weeks and seven months after a primary care well visit, caregivers completed surveys about whether indicated assessments were recommended by the doctor or received. The caregivers also reported on quality of life for themselves and their loved one and on satisfaction with the DSC2U platform if assigned to it. PCPs reported satisfaction with the platform two weeks after the well visit.

Caregivers, PCPs, and others with expertise in Down syndrome helped plan the study and design DSC2U.

Results

After seven months, compared with caregivers of people with Down syndrome who received usual care alone, caregivers who were offered DSC2U had a 1.6-fold increase in the number of indicated assessments that were recommended by their PCP or completed by their PCP or a specialist (p=0.016).

At two weeks and seven months after the primary care visit, caregiver-reported quality of life for caregivers and people with Down syndrome did not differ between caregivers who were offered DSC2U and those who received usual care alone. Caregivers and PCPs reported high satisfaction with DSC2U.

Limitations

Most caregivers in the study were white and had a four-year college degree or higher. Findings may differ for caregivers from other backgrounds.

Conclusions and Relevance

In this study, the web-based platform for caregivers increased indicated healthcare assessments for people with Down syndrome who did not have access to specialty care.

Future Research Needs

Future research could test DSC2U among diverse populations of people with Down syndrome.