Utility of mortality surveillance in adults with intellectual and developmental disabilities

The review of individual and aggregate mortality data for adults with intellectual disabilities can provide useful estimates of support service quality and underlying morbidity. Over the past decade, annual mortality statistics in select state intellectual and developmental disability service systems demonstrate mortality patterns with both similarities to and differences from patterns in the general population. Collectively, adults with intellectual disability tend to have a lower life expectancy at birth (58.7-62.0 years) compared with U.S. residents (77.9 years). Without adjusting for age, causes of death is 2009 suggest a lower burden of cancer (RR=0.67), and an increased burden of kidney disease (RR=2.0), septicemia (RR=3.6), Alzheimer's disease (RR=3.9), influenza and pneumonia (RR=6.4) and aspiration pneumonia (RR=21.1) in adults with intellectual disability receiving state services. Risk of death is similar to the general population for unintentional injuries (RR=1.4) and heart disease (RR=1.1). Similarly, the mortality rates for this subpopulation meet certain applicable Healthy People 2020 objectives, and fall short of other cause-specific target rates. While some causes of premature mortality in this population may be associated with the cause of the adult's intellectual disability and challenging to mitigate, others may have modifiable determinants either unique to this population or similar to the general population. Mortality surveillance and case review can be highly useful and fairly efficient strategies in resource-limited settings for effective targeting of health and service improvement strategies. Examples of recent effective interventions on both individual and policy levels to reduce morbidity and mortality based upon these findings will be presented.