Does a Web-Based Platform for Caregivers Help People with Down Syndrome Get Recommended Health Services? [Internet]

Excerpt

Background: The overwhelming majority of people with Down syndrome (DS) do not have access to DS specialty clinics, a disparity resulting in delayed or missed diagnoses and significant untreated comorbidities. To meet this critical gap in needs, our team created Down Syndrome Clinic to You (DSC2U), a novel, web-based technology created for caregivers of individuals with DS, which collects an extensive array of symptoms and historical data and automatically generates personalized recommendations for the caregiver (Caregiver Checklist) and the patient's primary care provider (Primary Care Provider Plan).

Objectives: We aimed (1) to test whether a customizable Caregiver Checklist and Primary Care Provider Plan vs usual care would increase caregiver-reported, provider-driven health actions consistent with national guidelines and (2) to determine whether a customizable Caregiver Checklist and Primary Care Provider Plan vs usual care would be satisfactory to caregivers and providers and could improve the quality of life (QOL) for caregivers/families.

Methods: We conducted a national randomized controlled trial of 230 caregivers who had sons or daughters with DS. We sought to determine whether, compared with usual care, our personalized Caregiver Checklist and Primary Care Provider Plan would improve adherence to 5 health care evaluations consistent with national guidelines: celiac screen, sleep study, thyroid test, audiogram, and ophthalmology evaluation. Completions of these evaluations were assessed by parent report 7 months after a wellness visit with the primary care provider. To validate caregiver responses, we obtained medical records from 20% of the caregivers. To determine whether using DSC2U was satisfactory to caregivers and providers, we asked for their opinions on novel surveys. To assess whether DSC2U could improve the QOL for caregivers/families, we used nationally validated Pediatric Quality of Life (PedsQL) survey instruments.

Results: Random assignment to the DSC2U resulted in significantly greater compliance with the 5 health care evaluations we assessed during a 7-month follow-up period. The number of indicated evaluations that were completed or that the primary care provider recommended was 1.6-fold greater among families offered use of the DSC2U than among those receiving standard of care (for the intervention group: mean [SD] number of evaluations that were recommended or completed, 0.53 [0.73] evaluations; indicated evaluations that were recommended or completed: 0 evaluations, 59.0%; 1 evaluation, 30.8%; 2 evaluations, 8.5%; and 3 evaluations, 1.7%; for the control group: mean [SD] number of evaluations that were recommended or completed, 0.33 [0.53] sessions; indicated evaluations that were recommended or completed: 0 evaluations, 69.9%; 1 evaluation, 27.4%; 2 evaluations, 2.7%; and 3 evaluations, 0%; difference = 0.20; 95% CI, 0.04-0.37; P = .016). Caregivers were highly accurate historians in reporting on the measured outcomes. Both caregivers and primary care providers reported high levels of satisfaction, even though caregiver QOL measures were not improved during this study.

Conclusions: DSC2U improved adherence to the national DS health care guidelines in a modality that both caregivers and primary care providers valued highly. DSC2U was effective in bringing high-cost specialty-level care to low-cost primary care settings.

Limitations: The participating caregivers were largely well educated, well resourced, and eager to access health information. To this extent, our results might not be generalizable to all families who have sons or daughters with DS.