Health care concerns and guidelines for adults with Down syndrome

Topic: Risk, prevention and care in population studies

Down syndrome (DS) is the most common cause of mental retardation in North America, yet little information is available on the natural history of DS in adults. We report on significant medical problems of adults with DS (DS adults) residing in a British Columbia provincial residential center, Woodlands, over the 12-year period from 1981 through 1992. Prospective, yearly health care reviews on 38 DS adults are summarized according to age. Group 1 consists of 18 middle-aged DS adults less than 50 years old, and group 2 comprises 20 elderly DS adults 50 years and older. Significant health problems in all DS adults include untreated congenital heart anomalies (15. 8%), acquired cardiac disease (15.8%), pulmonary hypertension (7.8%), recurrent respiratory infections/aspiration leading to chronic pulmonary interstitial changes (30%), complications from presenile dementia/Alzheimer-type disease (42%), adult-onset epilepsy (36.8%), osteoarthritic degeneration of the spine (31.6%), osteoporosis with resultant fractures of the long bones (55%) or vertebral bodies (30%), and untreated atlantooccipital instability (7.9%). Acquired sensory deficits are significant problems including loss of vision due to early onset of adult cataracts (50%), recurrent keratitis (21%) or keratoconus (15.8%), and significant hearing loss (25%). Behavioral problems (50%), loss of cognitive abilities, and onset of symptoms of Alzheimer disease (group 1: 5.5%; group 2: 75%) pose ongoing challenges for care. In conclusion, the quality of life for adults with DS can be improved by routine, systematic health care screening to identify treatable diseases that may be missed because of poor communication or confusion due to Alzheimer disease.

@article{vanallen1999-10559765,
  author  = {van Allen, M. I. and Fung, J. and Jurenka, S. B.},
  title   = {{Health care concerns and guidelines for adults with Down syndrome}},
  journal = {American journal of medical genetics},
  year    = {1999},
  doi     = {10.1002/(sici)1096-8628(19990625)89:2<100::aid-ajmg8>3.0.co;2-n},
  pmid    = {10559765},
  url     = {https://doi.org/10.1002/(sici)1096-8628(19990625)89:2<100::aid-ajmg8>3.0.co;2-n}
}

Key findings

• We report on significant medical problems of adults with DS (DS adults) residing in a British Columbia provincial residential center, Woodlands, over the 12-year period from 1981 through 1992.
• Significant health problems in all DS adults include untreated congenital heart anomalies (15. 8%), acquired cardiac disease (15.8%), pulmonary hypertension (7.8%), recurrent respiratory infections/aspiration leading to chronic pulmonary interstitial changes (30%), complications from presenile dementia/Alzheimer-type disease (42%), adult-onset epilepsy (36.8%), osteoarthritic degeneration of the spine (31.6%), osteoporosis with resultant fractures of the long bones (55%) or vertebral bodies (30%), and untreated atlantooccipital instability (7.9%).
• Acquired sensory deficits are significant problems including loss of vision due to early onset of adult cataracts (50%), recurrent keratitis (21%) or keratoconus (15.8%), and significant hearing loss (25%).
• In conclusion, the quality of life for adults with DS can be improved by routine, systematic health care screening to identify treatable diseases that may be missed because of poor communication or confusion due to Alzheimer disease.

Why it matters

This report on 38 adults with Down syndrome over 12 years lists significant health problems, including complications from presenile dementia or Alzheimer-type disease in 42%. It is a descriptive health care review and offers no treatment, cure, or prevention for Alzheimer's disease.

Study details

• Effect size15.8%; 7.8%; 36.8%
• Evidence strengthLow

Read the original

• DOI: 10.1002/(sici)1096-8628(19990625)89:2<100::aid-ajmg8>3.0.co;2-n
• PubMed: 10559765
• Original source →

May need a subscription OpenAlex found no free copy of the full text (checked 6 Feb 1020), so the publisher may charge for it. The PubMed abstract is free.

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