Healthcare and guidelines: a population-based survey of recorded medical problems and health surveillance for people with Down syndrome

J Intellect Dev Disabil. 2011 Jun;36(2):118-26. doi: 10.1080/13668250.2011.570253. Epub 2011 Apr 19.


Background: Medical problems are described in a population of persons with Down syndrome. Health surveillance is compared to the recommendations of national guidelines.

Method: Case records from the specialised and primary healthcare and disability services were analysed.

Results: A wide spectrum of age-specific medical and surgical problems was described. Congenital heart defects and middle ear infections were mostly experienced by younger people, while thyroid disease, epilepsy, and Alzheimer's disease were frequent among older people. Psychiatric disorders and behavioural problems were frequent in all age groups.

Conclusions: Health surveillance remained insufficient, despite the guidelines available. A joint effort by healthcare and disability service providers is required to ensure that the medical needs of people with Down syndrome are adequately met across their entire lifespan. An active provision of healthcare and monitoring for this vulnerable group is needed.

Publication types

  • Comparative Study
  • Evaluation Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Alzheimer Disease / epidemiology
  • Celiac Disease / diagnosis
  • Celiac Disease / epidemiology
  • Child
  • Child, Preschool
  • Comorbidity
  • Delivery of Health Care* / standards
  • Down Syndrome / epidemiology*
  • Down Syndrome / physiopathology
  • Down Syndrome / psychology
  • Down Syndrome / therapy*
  • Ear Diseases / epidemiology
  • Female
  • Health Services Needs and Demand
  • Hearing Loss / epidemiology
  • Heart Defects, Congenital / epidemiology
  • Humans
  • Hypothyroidism / diagnosis
  • Hypothyroidism / epidemiology
  • Infant
  • Infant, Newborn
  • Infections / epidemiology
  • Male
  • Mass Screening
  • Mental Disorders / epidemiology
  • Middle Aged
  • Oral Health
  • Population Surveillance*
  • Practice Guidelines as Topic*
  • Seizures / epidemiology
  • Syncope / epidemiology
  • Vision Disorders / epidemiology
  • Young Adult