Health care in adults with Down syndrome: a longitudinal cohort study

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