Establishment of a Patient-Centered Outcomes Research Network for Individuals with TBI and Neuropsychiatric Symptoms

Aims: The overarching goal of this project was to establish a group comprised of a variety of TBI stakeholders for the purpose of: (1) determining facilitators and barriers in management of neuropsychiatric symptoms after TBI; (2) identifying strategies for maintaining a TBI PCOR network; (3) enumerating research topics related to TBI neuropsychiatry; and (4) highlighting policy changes related to TBI neuropsychiatry. Methods: Twenty-nine TBI stakeholders participated in focus group discussions. Qualitative analyses were conducted both manually and using Dedoose software. Results: Participant-identified barriers included stigma associated with experiencing neuropsychiatric symptoms and poor insurance coverage. Facilitators included treatment focused on education of neuropsychiatric symptoms after TBI and having a comprehensive caregiver plan. Best strategies for maintaining TBI PCOR network included having a well-defined project, continued regular meetings, and on-going education of network members. Pertinent research topics included TBI and aging, factors influencing outcomes after TBI, substance use disorders related to TBI, and effectiveness of telemental health services. Needed policy changes included making TBI neuropsychiatry education accessible to stakeholders and improving accessibility of TBI neuropsychiatric care. Conclusion: TBI stakeholders identified several facilitators of care for neuropsychiatric symptoms after TBI and suggested research topics and best practices for conducting PCOR in this area.