Many adolescents with intellectual and developmental disabilities receive care coordination services from a state agency funded by the Office of Maternal and Child Health. Teens with disabilities are up to five times more likely to suffer from mental, emotional and behavioral health problems than teens without disabilities, according to researchers at the University of Illinois at Chicago, and care coordination services are helping these young people get the medical care and social services they need to be healthy.
However, current care coordination programs generally do not provide mental health treatment or preventive mental health interventions.
Today, UIC researchers received $ 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, results in better outcomes. results than a standard state agency care coordination program.
Mental health disparities have a disproportionate impact on people with disabilities and there are few preventive interventions or treatments to serve this vulnerable population. Early identification and treatment through a common point of access for young people with intellectual and developmental disabilities and families would be an ideal public health opportunity to prevent the onset of mental health disorders and improve trajectories. health and professional careers throughout the life of this historically underserved population. “
Kristin Berg, Co-Principal Investigator, UIC Associate Professor on Disability and Human Development at the College of Applied Health Sciences
Although the study is not yet open for enrollment, the researchers plan to engage 780 adolescents between the ages of 13 and 20 who have intellectual and developmental disabilities and their families and will monitor their health and experiences within the healthcare system. for 24 months. Recruitment will include adolescents living in urban and rural areas and will include 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 behavioral health CHECK component.
The CHECK program, originally designed to help Medicaid families and children with chronic illnesses gain better control over their long-term health, relies on community health workers alongside health care providers to better serve the whole person by addressing the social determinants of health.
“In this way, patients benefit from the support of experts in both fields – health and the social determinants of health – at the same time,” said Michael Gerges, executive director of CHECK. “The CHECK behavioral health model goes even further by intervening both preventively and actively to meet needs, while improving the referral process. “
Throughout the five-year study, researchers will follow how adolescents feel and health behaviors by asking questions about anxiety and depression, health, health habits, functioning, ability to manage health care and self-efficacy. The team will also assess how satisfied adolescents, parents and health care providers are with the care coordination experience.
“The results of this study will create new knowledge about models of care coordination that lead to better mental health and transition outcomes, as well as the model preferred by young people with disabilities and their families,” said the researcher. principal, Dr Benjamin Van Voorhees, UIC. professor and director of pediatrics at the faculty of medicine. “Such knowledge can lead to systematic changes in the way depression and anxiety are identified and treated in this population, potentially reducing existing barriers to accessing behavioral health care that disproportionately impact young people.” of racial and ethnic minorities with disabilities. “
Pending approval of the study by the UIC Institutional Review Committee, the researchers plan to enroll participants from fall 2022.
Rebecca Feinstein and Kruti Acharya from UIC, Tracy Gladstone from Wellesley College, Dr Michael Msall from the University of Chicago and Cheng-Shi Shiu from UCLA are working with Van Voorhees, Gerges and Berg on the study.
The Patient-Centered Outcomes Research Institute is an independent, not-for-profit organization authorized by Congress in 2010 to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information they need to make more informed decisions about care. health. Funding for the study, called Behavioral Health Stratified Treatment (BEST) to Optimize Transition to Adulthood for Youth with IDD, awaits completion of a business and programmatic review by PCORI staff and the issuance of a formal award contract.
University of Illinois at Chicago