title: Characterisation of user-defined health status in older adults with intellectual disabilities.
abstract: BACKGROUND
  Older adults with Intellectual Disabilities (ID) have an excess disease burden that standard health assessments are designed to detect. Older adults with ID have a broader concept of health with dimensions of well being in addition to absence of disease in line with the World Health Organization's health definition. We sought to characterise user-defined health status in a sample of older adults with ID.
  
  
  METHODS
  We administered a user-led health assessment to 57 adults with ID aged 40 years and over. Cluster analysis on user-defined health themes of participation, nutrition and hygiene/self-care identified clear separation of participants into a healthier and a less healthy group.
  
  
  RESULTS
  Disease burden (P = 0.002) and medication use (P = 0.003) were greater in the less healthy group. The healthier group were taller (P = 0.005), stronger (P = 0.005) and had better vision (P < 0.001) than the less healthy group. Constipation (P = 0.014), urinary incontinence (P < 0.001) and faecal incontinence (P < 0.001) were commoner in the less healthy group. There were few significant differences between health groups on the majority of standard physical-examination items.
  
  
  CONCLUSIONS
  There is considerable overlap between user-defined health and that assessed by standard instruments. In addition, user-defined health encompasses aspects of physical fitness not captured by traditional disease-based health models.
authors.affiliation: Geriatric Medicine Unit, Edinburgh University, Edinburgh, UK. jstarr@staffmail.ed.ac.uk
authors.forename: J M
authors.initials: JM
authors.lastname: Starr
authors.forename: L
authors.initials: L
authors.lastname: Marsden
mesh_terms: D000203:Activities of Daily Living / Q000145:classification / Q000523:psychology; D000328:Adult; D000367:Age Factors; D000368:Aged; D000818:Animals; D015897:Comorbidity; D004185:Disability Evaluation; D005260:Female; D015577:Geriatric Assessment; D006304:Health Status; D006306:Health Surveys; D006801:Humans; D006920:Hygiene; D008607:Intellectual Disability / Q000175:diagnosis / Q000523:psychology* / Q000534:rehabilitation; D008297:Male; D008875:Middle Aged; D015596:Nutrition Assessment; D010809:Physical Fitness; D012648:Self Care; D006113:United Kingdom