UNC researchers awarded $4.3M from PCORI to study strategies to improve health outcomes for youth with intellectual and developmental disabilities and their parents
The PCORI Addressing Health Equity award described below was developed with funding from the UNC Eshelman School of Pharmacy and the North Carolina Translational and Clinical Sciences (NC TraCS) Institute $2K Stakeholder Voucher award program. The Informatics and Data Science (IDSci) Program within the NC TraCS Institute provided access to data from the Carolina Data Warehouse to support preliminary research.
Kathleen C Thomas, PhD, MPH of the UNC Eshelman School of Pharmacy will lead a comparative effectiveness research study to improve health outcomes for youth with intellectual and developmental disability (IDD) and their parents through two parent peer group interventions, one parent-directed and one adding advocacy skills training.
A $4.3 million award from the Patient-Centered Outcomes Research Institute (PCORI) will allow researchers from the UNC Chapel Hill Schools of Pharmacy and Medicine, the UNC Sheps Center for Health Services Research, Olson Huff Center for Child Development at Mission Health, the Mountain Area Health Education Center, Oregon State University, University of Southern California, University of Texas Arlington, Ball State University, Johns Hopkins Bloomberg School of Public Health, community partners and stakeholder advocates to address unmet needs among transition-age youth with IDD and their parents. PCORI’s 2019 reauthorizing legislation specifies IDD as a research priority.
Kathleen C Thomas, PhD, MPH, associate professor in the Division of Pharmaceutical Outcomes and Policy, UNC Eshelman School of Pharmacy, will lead the Improving the health of parents and their adolescent and transition-age youth with IDD study that seeks to increase parent advocacy skills for youth in transition. Parent advocacy skills are the internal states (activation, self-efficacy) and processes (identifying and working toward goals, chronic disease self-management, shared decision-making with providers, persistence working toward goals) that result in improved parent health outcomes (reduced stress and depression) and improved youth health outcomes (social functioning, emotional health).
Parent advocacy skills can be increased through parent-directed peer-learning or through a psychoeducational advocacy skills curriculum. Parent-directed peer-learning groups provide both emotional and informational support.Core attributes are shared social identity, learning from the experiences of others, fostering personal growth and the opportunity to support others.Psychoeducation advocacy skills interventions teach how to formulate questions to get information, goal setting and assessment, and provide a framework for health communications where the parent takes an active role in decision-making. They also include attention to parent self-care and well-being.
Primary study outcomes are parent activation, a measure of self-efficacy managing chronic disease at home and getting needs met in the healthcare system; parent depression and social functioning of the youth with IDD. To test the comparative effectiveness of each parent intervention, the team will enroll 404 youth with IDD and a parent served in four practices in Chapel Hill and Asheville into the parent-directed or psychoeducational group intervention. The team will link survey data from parents and youth with audio-recorded visit details and electronic medical records as well as interviews of practice providers to understand the mechanisms that best support parent and youth outcomes.
A stakeholder advisory committee will meet quarterly and inform all aspects of the study. The advisory committee is comprised of parents of youth with IDD; youth with IDD who engage in the health and community-based services which the study will examine; and health advocates who work to support the health, community participation and research engagement of youth with IDD and their families.
PCORI’s Board has approved this funding award pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract. PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. The study team plans to begin work in the spring of 2022.