Health care in adults with Down syndrome: a longitudinal cohort study.
Keeping pediatric doctors after age 21 drives up cost and specialist visits for adults with Down syndrome without added health benefit.
01Research in Context
What this study did
The team tracked the adults with Down syndrome for six years.
They compared two groups: people who had switched to adult doctors and people who still saw pediatric specialists.
Insurance claims showed how much money was spent and how many specialists each person visited.
What they found
Adults who stayed with pediatric doctors cost $4,700 more each year.
They also saw twice as many heart, lung, and stomach specialists.
The extra visits did not make them healthier; it just cost more.
How this fits with other research
Channell et al. (2023) asked parents about job services for the same age group. Parents liked services that used natural supports and matched the person’s interests. Together, the two papers show that young adults with Down syndrome need adult services that fit them, not just more services.
Aguirre Mtanous et al. (2026) and Sosnowski et al. (2022) ran exercise programs for adults with Down syndrome. Both studies cut body fat and boosted heart health. These programs cost little but give clear gains, unlike the pricey extra specialist visits seen in the target paper.
Lin et al. (2007) counted visits for adults with mixed intellectual disabilities living in institutions. One-third averaged more than 25 outpatient visits a year. The target paper shows the same over-use happens in the community when people do not transfer to adult-focused care.
Why it matters
You can flag clients who still see pediatric doctors after age 21. Start the adult-transition process early: pick one adult primary doctor, add a yearly care plan, and loop in community exercise or job programs. This single switch can save thousands and cut unneeded specialist trips.
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02At a glance
03Original abstract
BACKGROUND: Individuals with Down syndrome increasingly survive into adulthood, yet little is known about their healthcare patterns as adults. Our study sought to characterise patterns of health care among adults with Down syndrome based on whether they had fully transitioned to adult-oriented providers by their inception in this cohort. METHODS: In this retrospective observational cohort study, healthcare utilisation and annualised patient charges were evaluated in patients with Down syndrome aged 18-45 years who received care in a single academic health centre from 2000 to 2008. Comparisons were made based on patients' provider mix (only adult-focused or 'mixed' child- and adult-focused providers). RESULTS: The cohort included 205 patients with median index age = 28 years; 52% of these adult patients had incompletely transitioned to adult providers and received components of their care from child-focused providers. A higher proportion of these 'mixed' patients were seen exclusively by subspecialty providers (mixed = 81%, adult = 46%, P < 0.001), suggesting a need for higher intensity specialised services. Patients in the mixed provider group incurred higher annualised charges in analyses adjusted for age, mortality, total annualised encounters, and number of subspecialty disciplines accessed. These differences were most pronounced when stratified by whether patients were hospitalised during the study period (e.g., difference in adjusted means between mixed versus adult provider groups: $571 without hospitalisation, $19,061 with hospitalisation). CONCLUSIONS: In this unique longitudinal cohort of over 200 adults aged 18-45 years with Down syndrome, over half demonstrated incomplete transition to adult care. Persistent use of child-focused care, often with a subspecialty emphasis, has implications for healthcare charges. Future studies must identify reasons for distinct care patterns, examine their relationship with clinical outcomes, and evaluate which provider types deliver the highest quality care for adults with Down syndrome and a wide variety of comorbidities.
Journal of intellectual disability research : JIDR, 2013 · doi:10.1111/j.1365-2788.2012.01589.x