Teens with disabilities are more likely to be anxious and depressed. For teens with disabilities, untreated depression and anxiety can negatively impact their health, complicate their transition to adulthood, and limit future possibilities.
Study: Many teens with disabilities and their families receive “care coordination services” from a state Maternal and Child Health Bureau (MCHB) agency. MCHB care coordination services help teens with disabilities get the medical care and social services they need to be healthy. MCHB care coordination programs usually do not provide mental health treatment. Complex HEalth Care for Kids (CHECK) developed a program to combine mental health treatment and care coordination services for teens with disabilities. The goal of this study is to see whether a care coordination program that treats depression and anxiety (Maternal Child Health Bureau [MCHB] care coordination + CHECK program) is better than a care coordination program (MCHB care coordination alone) that refers teens to mental health services in terms of making teens feel healthier, happier, and able to handle future challenges. The project team will test which care coordination approach is better at making teens with disabilities: (Aim 1) less anxious and depressed; (Aim 2) feel healthier, function better, and practice healthy habits; (Aim 3) improve their ability to manage their health. This study will also evaluate which approach makes (Aim 4) teens, parents, and providers feel more satisfied with their care coordination experience. This study will give teens with disabilities and their families information about what kinds of care coordination models are available, and better suited to their needs.
In order to do this study, the team will be reaching out to teens with intellectual and developmental disabilities, age 13-20 years old, who receive care coordination services from the state of Illinois MCHB. If they are interested, they will call study staff to become a part of the study. If these teens can read at the 4th grade level, and agree to be in the study, they will be placed, by chance, into either MCHB care coordination alone or into the MCHB care coordination + CHECK program. Teens with disabilities in MCHB care coordination alone will have a care coordinator who helps them identify and make plans to meet their needs and provides referrals to services/resources. Teens with disabilities in the MCHB care coordination + CHECK care coordination group will receive all the same things as the teens in the MCHB care coordination alone group. But, in addition, they will get mental health treatment directly from CHECK staff if they report symptoms of depression or anxiety. Treatment might be online games/activities or individual/group meetings that teach teens how to cope with negative thoughts and feelings. Teens in each group will be followed by staff for 24 months and will receive gift cards for participating. During this time, the team will ask teens with disabilities questions about their anxiety and depression (0, 6, 12, 24 mo.). The team will also ask teens about their health, health habits, functioning, ability to manage their health care, self-efficacy (0, 12, and 24 mo.), and their experience with care coordination (12 mo.). Other factors that affect youth outcomes will be measured in the study and include questions about parent health (depression/anxiety/stress), social support, treatment expectations, and care coordination experience (0, 12 mo.). Also, youth expectations about treatment, thinking style, stress, coping skills, and resilience will be surveyed at 0, 12, and 24 months. The team will be doing the entire study with about 780 teens with disabilities who live in urban and rural areas, and who are white, African American, Latino, and Asian.
The Stakeholders: During the study, the team will be checking in with community and teen, family, and care coordinator advisory boards to see if what the team is doing is working. Staff will also be asking teens, parents, and care coordinators what they think of the study and its progress. This is a next step study for the university because the team has talked with teens with disabilities, parents, and care coordination staff and put their needs and wishes into this study.
*All proposed projects, including requested budgets and project periods, are approved subject to a programmatic and budget review by PCORI staff and the negotiation of a formal award contract.