Background: Youth with intellectual and developmental disabilities (IDD) have a greater need for healthcare services, more visits that include complex terms and care information, and experience greater difficulty understanding, learning, and communicating preferences or needs. This makes healthcare communication for youth with IDD and their caregivers a particularly complex challenge—but one that is critical to address to help ensure positive outcomes for them. Although some models for guiding patient-provider communication exist, few have considered the needs and preferences of caregivers of pediatric patients with IDD, specifically.

Proposed Solution to the Problem: Kennedy Krieger Institute, a pediatric hospital in Baltimore, Maryland, offers medical multidisciplinary care for youth with IDD, an infrastructure for IDD clinical and research activities, and commitment to improving the lives of youth with IDD. To build capacity for research in IDD, the project team will use a PCORI awardee-developed strategy, the SEED (Stakeholder Engagement in quEstion Development; E. Zimmerman, PI) method, with stakeholders at the institute. A diverse team of stakeholders, including caregivers of youth with IDD and providers, will develop PCOR priorities and CER questions to help address identified needs in healthcare communication.

Objectives: Project goals include engaging stakeholders to identify important outstanding issues in patient/family-provider and intra-provider communication related to IDD; determine common themes;  develop and prioritize related PCOR/CER questions that matter to stakeholders; and share the priorities and questions to guide future research and increase awareness of the relevant issues among providers and patients.

Activities: The flexible SEED method includes focus groups to gain broad-based insights from diverse stakeholders, conceptual modeling exercises to identify and flesh out common themes from the focus groups, and team sessions identifying PCOR priorities and CER questions that matter to stakeholders. The existing PCORI Research Fundamentals modules (modules 1, 2, and 5) will also be included to help stakeholders develop a shared vocabulary around research topics in order to ensure that all stakeholders, not only those who have had research training, have an equal voice in the process.

Projected Outcomes and Outputs: Outcomes during the project period will include prioritized lists of healthcare communication challenges, research topics and questions, as well as dissemination of this information to the community. Post-project outcomes will include further dissemination of this information to the community and institutional efforts to address the challenges. Longer-term outcomes will include PCOR/CER projects to investigate healthcare communication challenges. These outcomes will ensure that future research reflects priorities that matter to stakeholders.

Patient and Stakeholder Engagement Plan: Committed project stakeholders include three parents of youth with IDD and co-occurring conditions who have received care at the team’s institution for years, are actively involved in the disability community, and willing to leverage their community connections to engage other stakeholders. Committed provider stakeholders include medical, psychology, and speech-language clinicians who will engage additional provider stakeholders. The team will also work with the institute’s Maryland Center for Developmental Disabilities, which has active partnerships across the state.