Helping teens with disabilities prevent and treat depression, anxiety

Many teens with intellectual and developmental disabilities receive care coordination services from a Maternal and Child Health Bureau-funded state agency. Teens with disabilities are up to five times more likely to suffer from mental, emotional and behavioral health disorders than adolescents without disabilities, University of Illinois Chicago researchers say, and care coordination services help these young people get the medical care and social services they need to be healthy.  

However, current care coordination programs usually do not provide mental health treatment or offer preventive mental health interventions.   

Now, researchers at UIC have been awarded $7 million from the Patient-Centered Outcomes Research Institute to assess whether integrated behavioral health care coordination, which includes a tailored mental health treatment component, achieves better outcomes than a standard state agency care coordination program.

“Mental health disparities disproportionately impact individuals with disabilities and few preventive interventions or treatments exist to serve this vulnerable population,” said co-principal investigator Kristin Berg, UIC associate professor of disability and human development at the College of Applied Health Sciences. “Early identification and treatment through a common point of service entry for youth with intellectual and developmental disabilities and families would be an ideal public health opportunity to prevent the onset of mental health disorders and improve health and vocational trajectories across the lifespan for this historically underserved population.”  

While the study is not yet open for enrollment, the researchers plan to engage 780 teens ages 13-20 who have intellectual and developmental disabilities and their families and will follow their health and experiences within the health care system for 24 months. Recruitment will include teens living in urban and rural areas and will be inclusive of all racial and ethnic identities. 

While all participants will receive standard care coordination from the state agency, half of the participants will also receive the CHECK behavioral health component. 

The CHECK program, which originally was designed to help Medicaid-covered families and children with chronic health conditions achieve better long-term control of health, leverages community health workers alongside health care providers to better serve the whole person by addressing social determinants of health. 

“This way the patients get expert support in both areas — health and social determinants of health — at once,” said Michael Gerges, executive director of CHECK. “The CHECK behavioral health model takes things a step further by intervening both preventively and actively to address needs, while additionally enhancing the referral process.” 

Throughout the five-year study, the researchers will track how teens feel and their health behaviors by asking questions about anxiety and depression, health, health habits, functioning, ability to manage health care, and self-efficacy. The team also will track how satisfied teens, parents and health care providers are with the care coordination experience. 

“The results of this study will create new knowledge on which care coordination models result in better mental health and transition outcomes, as well as which model is preferred by youth with disabilities and their families,” said principal investigator Dr. Benjamin Van Voorhees, UIC professor and head of pediatrics at the College of Medicine. “Such knowledge can lead to systematic changes in how depression and anxiety are identified and treated in this population, potentially reducing existent barriers to access to behavioral health care that disproportionately impact racial and ethnic minority youth with disabilities.” 

Pending approval of the study by the UIC Institutional Review Board, the researchers plan to enroll participants beginning in the fall of 2022.    

Working with Van Voorhees, Gerges and Berg on the study are Rebecca Feinstein and Kruti Acharya of UIC, Tracy Gladstone of Wellesley College, Dr. Michael Msall of the University of Chicago and Cheng-Shi Shiu of UCLA. 

The Patient-Centered Outcomes Research Institute is an independent nonprofit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. Funding for the study, called Behavioral Health Stratified Treatment (BEST) to Optimize Transition to Adulthood for Youth with IDD, is pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.