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

J Intellect Disabil Res. 2013 Oct;57(10):947-58. doi: 10.1111/j.1365-2788.2012.01589.x. Epub 2012 Jul 10.


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.

Keywords: Down syndrome; health services research; healthcare transition; healthcare utilisation; intellectual disability.

MeSH terms

  • Academic Medical Centers / economics
  • Academic Medical Centers / statistics & numerical data
  • Adolescent
  • Adult
  • Comorbidity
  • Diagnosis-Related Groups / economics
  • Diagnosis-Related Groups / statistics & numerical data*
  • Down Syndrome / economics
  • Down Syndrome / epidemiology
  • Down Syndrome / therapy*
  • Female
  • Health Services / economics
  • Health Services / statistics & numerical data*
  • Heart Defects, Congenital / epidemiology
  • Hospitalization / economics
  • Hospitalization / statistics & numerical data
  • Humans
  • Hypothyroidism / epidemiology
  • Intellectual Disability / economics
  • Intellectual Disability / epidemiology
  • Intellectual Disability / therapy*
  • Joint Instability / epidemiology
  • Longitudinal Studies
  • Male
  • Middle Aged
  • Retrospective Studies
  • United States / epidemiology
  • Young Adult