Improving Health Care Communication and Engagement for Adults with Down syndrome

/ ABSTRACT Individuals with Down syndrome (DS) experience health disparities that escalate with age. When pressed, clinicians echo the documented literature: clinicians lack confidence in providing quality care to individuals with intellectual and developmental disabilities (IDD) like DS. Dr. Sanders is an Assistant Professor, board certified in Neurology with Special Qualifications in Child Neurology and Neurodevelopmental Disabilities. Her preliminary work revealed that resident physicians in adult settings lacked confidence caring for patients with IDD due to lack of skills in communicating and engaging with adults with IDD and their supporters (caregivers). There is a communication tool for patients with autism that has been developed to help with this, but the tool has not been implemented widely or tailored for individuals with DS. To address this gap, Dr. Sanders will adapt a patient-and- supporter-initiated communication tool to meet the specific needs of adults with DS, their supporters, and clinicians. This proposed study, rooted in the RE-AIM framework for implementation science, will pursue three aims, to (1) analyze communication quality in adult primary care encounters using the unique qualitative method of Conversation Analysis; (2) adapt a patient-and-supporter-driven communication tool that meets the unique needs of adults with DS who have intellectual disability and come to clinic with a supporter; and (3) conduct a pragmatic pilot acceptability and feasibility trial of the adapted tool with adult clinicians, adults with DS, and their supporters. To achieve these aims, Dr. Sanders will pursue training in targeted research methods: Conversation Analysis, user centered design, and implementation science, including pragmatic trial design and analysis. Her multidisciplinary mentorship and advisory team brings expertise in neurodevelopmental disabilities, Conversation Analysis, communication in IDD, qualitative and mixed methods, physician behavior, user- centered design, pragmatic trial design, implementation science, and biostatistics. The University of Colorado Anschutz Medical Campus provides a unique research environment to conduct research on communication with adults with DS, supported by collaborative partnerships between the Adult and Child Center for Health Outcomes Research and Delivery Science, the Linda Crnic Institute for DS Research, and the large network of clinics that serve adults with DS. Successful completion of the research aims paired with the career development plan will provide preliminary data and allow for the refinement of data collection procedures to inform an R01 application to conduct a multi-site hybrid effectiveness implementation trial to evaluate the tool's ability to improve health care for individuals with DS. Project Number: 1K23HD117039-01A1 | Fiscal Year: 2025 | NIH Institute/Center: Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) | Principal Investigator: Jessica Sanders | Institution: UNIVERSITY OF COLORADO DENVER, Aurora, CO | Award Amount: $163,813 | Activity Code: K23 | Study Section: Biobehavioral and Behavioral Sciences Study Section[CHHD-H] View on NIH RePORTER: https://reporter.nih.gov/project-details/1K23HD11703901A1