The proposed administrative supplement will enable the first national study of the prevalence, incidence, and healthcare service use of individuals with autism spectrum disorder (ASD) and Alzheimer?s disease and related dementias (ADRD). ASD and ADRD are both associated with high and increasing costs of care in the U.S., and conflicting evidence has pointed to areas of clinical and treatment overlap in the diagnoses. We will capture the first large, national cohort of individuals with ASD and ADRD to investigate prevalence and incidence of co-occurrence and specific treatment and service use, in order to shed light on patterns of comorbidity and treatment. This key evidence will be relevant to policies regarding necessary services and supports. We propose to use 2008-2016 national Medicaid and Medicare claims data to identify individuals with co-occurring ASD and ADRD ages 30 and over, followed through the 8-year study period. Medicaid houses several robust mechanisms to provide care to individuals with ASD and ADRD but is the payer of last resort among federal insurers. Medicare covers 44 million Americans and, in addition to being available to all individuals once they turn 65, is available to adults under the age of 65 who have received Social Security Disability Insurance (SSDI) for at least 24 months. Individuals with ASD and ADRD are likely to meet criteria to receive services in both systems, as both diagnoses are SSDI-included condition categories and examining healthcare service use across both systems is essential to fully evaluating costs of care. Given the recent increase in prevalence of ASD and growth in costs of care for ADRD, we will first focus on establishing the incidence and prevalence of ASD and ADRD, annually and for the overall study period, as well as relevant subgroup differences (e.g., by sex, co-occurring intellectual disability, age of onset of ADRD). Second, we will compare healthcare service use among individuals who are identified with ASD and ADRD in the Medicaid and Medicare claims. We will examine differences in the type and quantity of ambulatory, inpatient, and residential services, with attention to relevant sociodemographic and clinical characteristics and potential gaps in care. Completion of this study will provide information needed to establish a service system that is poised to serve adults with ASD and ADRD as they age and will contribute substantively to the knowledge base on the clinical profile of older adults with ASD and ADRD who are in need of services and supports.

Public Health Relevance

Autism spectrum disorder (ASD) is a lifelong condition, and there is a pressing need to understand more about Alzheimer?s disease and related dementias (ADRD) in this population. This project will use national Medicaid and Medicare data to examine the co-occurrence of ASD and ADRD and to examine the services used by this group. Specifically, we will examine both incidence and prevalence of ASD and ADRD, along with subgroup differences across clinical and demographic characteristics, and document specific types of service use, including ambulatory, inpatient, residential, and pharmacy care.

Agency
National Institute of Health (NIH)
Institute
National Institute of Mental Health (NIMH)
Type
Research Project (R01)
Project #
3R01MH117653-03S1
Application #
10123471
Study Section
Mental Health Services Research Committee (SERV)
Program Officer
Juliano-Bult, Denise M
Project Start
2018-09-01
Project End
2022-06-30
Budget Start
2020-07-01
Budget End
2021-06-30
Support Year
3
Fiscal Year
2020
Total Cost
Indirect Cost
Name
Drexel University
Department
Type
Organized Research Units
DUNS #
002604817
City
Philadelphia
State
PA
Country
United States
Zip Code
19102