Characterisation of user-defined health status in older adults with intellectual disabilities

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.