Aging with disabilities: Comparing symptoms and quality of life indicators of individuals aging with disabilities to U.S. general population norms.

TitleAging with disabilities: Comparing symptoms and quality of life indicators of individuals aging with disabilities to U.S. general population norms.
Publication TypeJournal Article
2012
AuthorsAmtmann D, Borson S, Salem R, Johnson KL, Verrall A
JournalJournal of the American Geriatrics Society
Volume60
IssueS4
PaginationS185
Special Issue: 2012 Annual Scientific Meeting Abstract Book

Background: Advances in medical care and rehabilitation have extended the lifespan of people with long-term physical disabilities. However, quantifying the excess burden of symptoms in persons aging with disabilities has been hindered by lack of common metrics across measures and clinical populations. The NIH-funded PROMIS initiative used modern psychometric methods to develop instruments that do use a common metric and provide US population norms for many important domains. The objective of the current study was to construct profiles of symptoms and QoL indicators in persons aging with a long-term disability and to compare them to US population norms. Methods: PROMIS short forms measuring 7 symptoms or QoL indicators (fatigue, pain interference with activities, physical and social function, depression, and sleep and wake disturbance) were completed by individuals with muscular dystrophy (264), multiple sclerosis (481), post-polio syndrome (445), and spinal cord injury (323) (total N=1513) participating in an ongoing longitudinal survey. Individuals aged 45-94 were included in this analysis. Scores for the overall sample, by diagnostic group and by age categories, were compared to the PROMIS US population norms. Results: Compared to the US general population, individuals aging with disabilities reported a higher symptom burden and poorer QoL on 6 of 7 measures (all p<0.0001). Only wake disturbance did not differ from the general population. Statistically significant differences ranged from a low of 2.4 points (sleep disturbance) to a high of 14.4 points (physical function) (T-score metric with a mean of 50 and sd of 10). Comparison to age group norms suggested that older (65+) individuals with disabilities experienced worse fatigue, more pain interference, higher depressive symptoms and lower social function than younger disabled groups.Differences between the disabled and general population groups in symptom burden and QoL widened with age; the oldest group, aged 75+, fared worst. Conclusions: Results clearly document that discrepancies in symptoms and QoL between the general population and people with disabilities increase with aging. Individuals with long-term disabilities constitute a subgroup of the aging population that may require specialized specialized models of health care to manage symptoms adequately, and optimize function and QoL.