Project Summary

Background: Approximately half of individuals with intellectual and developmental disabilities (IDD) engage in severe problem behavior (e.g., aggression, self-injury). Such behavior poses significant risk of injury, negatively impacts quality of life and results in substantial public health costs. Although there are efficacious behavioral interventions to decrease problem behavior for individuals with IDD, they must be consistently implemented by caregivers to maintain positive outcomes. Unfortunately, caregivers experience significant challenges adhering to behavioral interventions, making long-term positive health outcomes for individuals with IDD a challenge. Furthermore, researchers have been slow to collaborate with stakeholders to develop patient-centered comparative clinical effectiveness research (CER) and address adherence challenges.

Proposed Solution to the Problem: To build capacity for patient-centered CER with stakeholders of individuals with IDD who engage in severe problem behavior, the project team will use a PCORI awardee-developed strategy, the Stakeholder Engagement in Question Development (SEED method). The project team will recruit and engage a diverse group of stakeholders in the IDD community (caregivers, healthcare providers and researchers) to develop patient-centered CER priorities and questions that address barriers to long-term IDD behavioral health outcomes. In building this capacity, researchers will be positioned to conduct patient-centered CER that examines a more complete range of factors that impact health outcomes and identify how clinical practices can be varied to improve long-term health outcomes for individuals with IDD.

Objectives: The overall aim of this project is to engage stakeholders in the IDD community and create a foundation for collaborative patient-engaged CER. Project objectives include:

  1. Identifying variables that contribute to a lack of long-term positive IDD behavioral health outcomes.
  2. Identifying common themes from stakeholders.
  3. Developing patient-centered CER questions.
  4. Prioritizing research questions based on relevance to stakeholders.
  5. Finalizing and disseminating the research agenda to guide future patient-centered CER.

Activities: The SEED method uses multilevel stakeholder engagement and flexible strategies such as conceptual modeling exercises, topic groups and stakeholder interviews. This method will allow the project team to gain broad, representative insights and identify prioritized patient-centered CER questions relevant to stakeholders of individuals with IDD with co-occurring severe problem behavior.

Projected Outcomes and Outputs:

Short-term outcomes during the project period include building capacity for stakeholders in the IDD community to participate in patient-centered CER, a list of stakeholder-generated research priorities related to positive long-term behavioral health outcomes and finalization and initial dissemination of the patient-centered CER agenda to scientific and stakeholder communities.

Medium-term outcomes (0-2 years post-project period) include initiating the stakeholder-generated patient-centered CER agenda, continued collaboration of stakeholders and further dissemination to the relevant communities.

Long-term outcomes (3+ years post-project period) include continued and new initiations of patient-centered CER through expanded efforts to connect researchers and stakeholders.

Patient and Stakeholder Engagement Plan: Stakeholders will be caregivers of individuals with IDD who have co-occurring problem behavior and healthcare providers and researchers who specialize in working with this population. The project team will engage stakeholders at multiple levels including consultation, collaboration, and participation in leading the project. The project team will leverage existing state and national partnerships to support diverse stakeholder engagement and ensure relevant outcomes and dissemination of findings.

Project Collaborators: Utah State University, Western Michigan University, National Council of Severe Autism, Association for Professional Behavior Analysts, Council of Autism Service Providers, Utah Parent Center, University of Nebraska Medical Center’s Munroe-Meyer Institute, Marcus Autism Center, Autism Alliance of Michigan, Michigan Behavior Analysis Providers Association (MiBAP), Great Lakes Center for Autism Treatment and Research, and Easterseals.

Project Information

Katherine Brown, Ph.D.
Sacha Pence, Ph.D.
Utah State University

Key Dates

December 2025


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: April 3, 2024