Background: Patient-centered outcomes research/comparative clinical effectiveness research (PCOR/CER) generates knowledge about the impact of health interventions on outcomes that matter to patients. Such research helps children, youth, and young adults (YYA) with behavioral health needs and their parents make informed decisions about the treatments and services that will help them achieve the outcomes most important to them. Conducting PCOR/CER requires clarity about outcomes that matter to these youth and families. To date, there has been limited systematic identification of the behavioral health services outcomes valued by YYA and families.
Proposed Solution to the Problem: To advance PCOR/CER for children and YYA with behavioral health conditions and their families, the proposed project seeks to fill this knowledge gap through a series of stakeholder convenings.
- To develop a comprehensive list of existing child/YYA- and family-level outcomes used in behavioral health services policies and research
- To identify child/YYA- and family-level behavioral health services outcomes most valued by child and YYA service users and their parents, as well as the underlying values that are the foundation of these preferences overall and by domains (e.g., symptoms, functioning, healthcare system)
- To create a summary of the patient-centered outcomes (PCOs) valued by child behavioral health services which are most valued by children and YYA with behavioral health needs and their parents; distribute the summary through the project team’s dissemination networks
Activities: Convening stakeholder members of a national professional organization of family-run organizations supporting youth with behavioral health needs and their families, The Family Run Executive Director Leadership Association (FREDLA) brings together stakeholders with the insight and stature to speak for families nationally regarding patient-centered outcomes that matter most to them. Two rounds of virtual stakeholder convenings across six communities with each stakeholder group (YYA and caregivers) will result in a finalized list of behavioral health service outcomes most valued by children, YYA, and caregivers.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include: Final outcome lists from the convenings will be converted into a one-page graphic, a short video, and a two-page brief.
Medium-term outcomes (0-2 years post-project period) include: Dissemination of this product through FREDLA’s website, member organizations, and national policy and research networks will advance PCOR/CER by providing clear guidance to researchers, their funders, and policy makers about the child, YYA, and parent behavioral health services outcomes valued most by children, YYA, and their families.
Long-term outcomes (3+ years post-project period) include: The proposed project’s long-term objectives are to advance PCOR/CER for children, YYA, and families who use behavioral health services by providing guidance to children’s behavioral health researchers and research funders about patients’ priorities for service outcomes.
Patient and Stakeholder Engagement Plan: YYA and family stakeholders will be fully engaged throughout the planning, convening, and post planning activities of this project. FREDLA and partner YYA-led and family-run organizations (FROs) will assist in planning recruitment and facilitation of the convenings. Outcome information from both convenings will be verified with partner organization leadership. All convenings will be co-facilitated by the research partners and parent and YYA leaders from partner organizations. The final project product dissemination materials will be designed in collaboration with partner FROs and YYA-Led Organization leadership.
Project Collaborators: FREDLA will partner with FROs and their YYA-led organizational partners in six communities around the United States to plan and execute the local convenings and to finalize and disseminate project results. FREDLA will also partner with the University of Texas at Arlington and the University of North Carolina Chapel Hill for research guidance and support. The research team will identify initial resources for identifying outcomes and will contribute to the planning, execution, and evaluation of the project and its processes.