The population of adults with intellectual and developmental disabilities (IDD) over the age of 60 is predicted to increase from approximately 641,860 in 2000 to 1.2 million in 2030. While this is significant progress, research findings have shown there is still a significant gap in the average life expectancy between people with IDD and the general population due to premature mortality associated with chronic conditions. People with IDD are not only at higher risk of developing chronic conditions, but more likely to develop multiple chronic conditions (MCC), than the general population, which results in unmet complex healthcare needs, and increased morbidity and mortality. The disparities in morbidity and mortality associated with MCC could be even more critical for people with IDD that belong to racial and ethnic minority groups. People with IDD from racial and ethnic minority backgrounds are more at risk of developing MCC, receive substandard care as a result of well-documented inequities, face various social risks, and lack the resources necessary to navigate the healthcare system. So far, there are no published studies using nationally representative data that examined the burden of MCC and associated health and healthcare outcomes among racial and ethnic minorities with IDD in the United States. The aim of this study is to investigate the racial and ethnic disparities in healthcare experience, morbidity, and mortality associated with multiple chronic conditions among adults with intellectual and developmental disabilities (IDD).
The proposed study is a retrospective analysis of three national datasets including outpatient data from the Medical Expenditure Panel Survey (MEPS), and national emergency department visits and hospitalization data from the Healthcare Cost and Utilization Project (HCUP) datasets. This study will examine several outcomes relating to healthcare experiences, including receipt and frequency of specialist care in the past 12 months, perceived quality of health care, delayed or foregone medical care and prescription medications, and reasons for delaying or foregoing such care. Morbidity and mortality outcomes include MCC-related emergency department visits, MCC-related hospitalization, and mortality associated with MCC.
In addition, this study will also examine the impact of MCC and COVID-19 on morbidity and mortality among racial and ethnic minorities with IDD.
This study will provide evidence of the extent of disparities associated with MCC among racial and ethnic minorities with and without IDD. These findings are likely to yield highly relevant information to inform policymakers, public health practitioners, and clinicians about the needs of people with IDD with MCC, and especially those from racial and ethnic minority groups. Findings from this study will also build new knowledge that can help this highly vulnerable population by informing the development and testing of specific, targeted policy and practice interventions to reduce disparities and promote the health of all people with IDD including those from racial and ethnic minority populations. Additionally, better understanding of the complexities and health challenges posed by COVID-19 and MCC among these vulnerable groups will likely add relevant information for a more equitable COVID-19 response and management during the ongoing and future health emergencies.
