Background: Annually, 3.8 million children and young adults under the age of 19 sustain a sports-related concussion (SRC). There is growing concern about the long-term effects of SRC, like anxiety and executive dysfunction, and researchers should collaborate with stakeholders to identify solutions to challenges in SRC care. Specifically, athletes who are at increased risk for SRC (e.g., contact sports athletes), parents, and other stakeholders should be engaged as partners in research to examine barriers and patient-centric approaches to improve concussion safety in youth athletics. However, there is a lack of knowledge amongst SRC stakeholders regarding the role of patient centered outcomes research (PCOR) and comparative clinical effectiveness research (CER) to address critical issues of screening, diagnosis, and treatment.

Proposed Solution to the Problem: The project team will engage a comprehensive group of patients (children and young adults) and stakeholders (parents, coaches, athletic trainers, medical professionals, school administrators and nurses, community partners, policy makers) to identify shared PCOR priorities for SRC research and engagement of children/young adults. Together, the team will partner to generate a research agenda to inform SRC PCOR/CER efforts and promote engagement of children and young adults. The project will be led by researchers and clinicians at Baylor Scott & White (BSW) and involves local, regional, and national partners so project outcomes may be broadly adopted beyond the project team to maximize impact and sustainability.

Objectives: The primary aims are to create a knowledgeable, engaged, and collaborative group of patients and stakeholders with an interest in SRC safety in youth athletics and build their PCOR/CER capacity by providing education on PCOR/CER, identifying shared research priorities on issues with SRC screening, diagnosis, and treatment, and establishing engagement strategies for children and young adults in PCOR/CER.  

Activities: The team will establish a collaborative group of patients and stakeholders impacted by SRC. They will be trained on PCOR/CER and the importance of stakeholder engagement in SRC research to facilitate discussion on challenges and potential solutions to SRC screening, diagnosis, and treatment. The information from these meetings will be synthesized into a research agenda to guide PCOR and engagement strategies in SRC.

Projected Outcomes and Outputs: 

Short-term outcomes during the project period:
The team will partner with stakeholders to (1) develop a publishable PCOR/CER Research Agenda that includes patient and stakeholder-identified priorities for screening, diagnosis, and treatment of SRC, (2) produce a resource for the Toolkit that describes the processes and strategies for engaging with children and young adults as partners in PCOR/CER research, and (3) create a publishable report to submit to a peer reviewed journal summarizing the process used to facilitate engagement of children and young adults as stakeholders in PCOR/CER.

Medium-term outcomes (0-2 years post-project period):
The team will (1) establish an infrastructure for engaging and disseminating research findings to the stakeholder group through the local, regional, and national partners, (2) work with local, regional, and national partners to broadly disseminate the resource to support engagement of children and young adults in PCOR/CER for others to use locally and nationally, and (3) identify appropriate PCORI funding opportunities to address patient and stakeholder PCOR/CER priorities and submit a proposal. 

Long-term outcomes (3+ years post-project period):
The team will (1) maintain an engaged and knowledgeable group of stakeholders in SRC PCOR/CER efforts, (2) integrate PCOR/CER findings into SRC care and disseminate findings (fact sheets, clinical decision-making trees, media releases, published research, and conference presentations), (3) pursue state and national policy  opportunities to ensure evidence-based approaches are used with screening, diagnosis, and treatment of SRC, and (4) submit/resubmit funding applications to PCORI to address patient- and stakeholder-identified SRC PCOR/CER priorities. 

Patient and Stakeholder Engagement Plan: Patients and stakeholders will engage in monthly meetings across the project period. Discussion will build upon previous topics to ensure continuity and include updates on the stakeholders’ ongoing efforts and joint dialogue, feedback loops to improve engagement efforts, and shared consensus on PCOR/CER priorities in SRC research. Reciprocal partnerships, co-learning, trust, transparency, and honesty will be established between all stakeholders.

Project Collaborators: The project includes children/young adults, parents, collaborators from BSW, a local school district, and state and national youth sports partners.