Health Care Utilization and Costs Among Transition-Age Young Adult Medicare Beneficiaries With Autism Spectrum Disorder

PURPOSE: Little is known about the patterns of health care utilization and quality of care for persons with autism spectrum disorder (ASD) transitioning from pediatric to adult care, although this population is growing as the number of diagnosed individuals increases. Emerging research suggests that this group is more likely than typical adults to experience depression, anxiety, and multiple other physical and mental health conditions and is more likely to experience premature mortality, especially if an individual has comorbid intellectual disability (ID). Occupational therapists are frequently involved in the care of children with ASD; however, greater understanding of adult care needs is warranted. The purpose of this study was to describe patterns of health care utilization and expenditures in young adult Medicare beneficiaries with ASD ages 18–25 yr compared with individuals with ID.

DESIGN: This health services research was conducted using secondary analysis of the 2008–2010 Medicare Limited Data Set files to identify claims of ASD and ID groups. The files represented a sample of 100% fee-for-service claims in inpatient, outpatient, home health, hospice, and skilled nursing files and a 5% carrier claims file for the Medicare population in each year. A single occurrence of an ICD–9–CM code 299.xx defined ASD cases; codes 317.xx, 318.xx, or 319.xx defined ID cases. All associated claims for eligible cases were extracted from the files across all study years. Study groups (SGs) were defined as ASD only (ASD; n = 3,529), ASD with ID (ASD+ID; n = 2,055), and ID only (ID; n = 13,259).

METHOD: Claims associated with visits to primary care providers (PCPs), emergency department (ED), and outpatient occupational and physical therapy (OT/PT) evaluations were quantified, as were costs associated with these claims. Bivariate counts and proportions of total study groups experiencing utilization among the three SGs were calculated, and zero-inflated regression models were used to examine factors associated with utilization for SGs while adjusting for high rates of nonuse.

RESULTS: All SGs demonstrated low utilization of PCPs; 3%–8% of all individuals with ASD, ASD+ID, or ID had a single claim for a PCP in each study year. ED utilization was high for all groups, with 40%–41% of adults with ASD, 51%–53% of adults with ASD+ID, and 52%–57% of adults with ID having at least one visit to an ED in each claim year. Therapy utilization was close to 0% for each group and study year, with rates of utilization ranging from 0.08% to 0.26% (ASD only), 0.11% to 0.15% (ASD+ID), and 0.06% to 0.21% (ID only) for a visit to a therapist that resulted in an OT/PT CPT evaluation code. Expenditures for individuals with ASD+ID were approximately 50% greater than those with ASD only for all file types examined.

CONCLUSION: Young adults in all study groups experienced low rates of PCP and OT/PT utilization and high rates of ED utilization. These findings indicate a need for identifying barriers to high-quality health care among young adults with autism spectrum disorder, as well as young adults with intellectual disability, which may include services that could be addressed by occupational therapy practitioners. Future work should evaluate provider availability to provide care in settings beyond outpatient hospitals, payer support for such interventions, and system supports and barriers to care.

IMPACT STATEMENT: We identified concerning patterns of health care utilization among youth ages 18–25 yr with ASD. Occupational therapy practitioners are rarely involved in treatment of this group outside of educational systems, although there is a great need to develop interventions to increase overall wellness and use of preventive services for this population as the profession moves into 21st-century care.

References

Centers for Disease Control and Prevention. (2014). Prevalence of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. Morbidity and Mortality Weekly Report, 63(SS02), 1–21.

Croen, L. A., Zerbo, O., Qian, Y., Massolo, M. L., Rich, S., Sidney, S., & Kripke, C. (2015). The health status of adults on the autism spectrum. Autism, 19, 814–823. https://doi.org/10.1177/1362361315577517

Hirviloski, T., Mittendorfer-Rutz, E., Boman, M., Larsson, H., Lichtenstein, P., & Bölte, S. (2016). Premature mortality in autism spectrum disorder. British Journal of Psychiatry, 208, 232–238. https://doi.org/10.1192/bjp.bp.114.160192