Authors :
Presenting Author: Carly Sykes, MPH – Dartmouth Health
Elaine Kiriakopoulos, MD, MPH, MSc – Neurology – Dartmouth Health, Geisel School of Medicine at Dartmouth College; Tiffany Israel, MSSW – Vanderbilt Institute for Clinical and Translational Research; Barbara Jobst, MD, Dr.med, FAES, FAAN – Neurology – Dartmouth Health, Geisel School of Medicine at Dartmouth College
Rationale:
The need to engage people with epilepsy and their families in understanding the burden of epilepsy and its comorbidities was emphasized in a 2012 report from the Institute of Medicine around public health dimensions of the disease. Community Engagement Studios (CES), a consultative model used in patient-centered research and program development, are a valuable means to engage stakeholders. We used CES methodology to acquire feedback from people with post-traumatic epilepsy (PTE) and their care partners to inform the adaptation of the HOBSCOTCH program specifically for PTE. A panel consisting of two traumatic brain injury (TBI) specialists (MDs), four epilepsy specialists (MDs), and two neuropsychologists (PhD and PsyD) was subsequently conducted for additional input on the adapted HOBSCOTCH-PTE education module.
Methods:
Twenty adults who self-reported a history of PTE were screened for participation in the CES. Those who met eligibility criteria were invited to participate as “community experts” in a two hour virtual CES via a secure Zoom meeting. Prior to the CES, members of the research team and facilitator prepared a discussion guide with key questions for participants and a presentation with context about the HOBSCOTCH program. Five community experts from diverse backgrounds (Table 1) attended the patient CES and shared feedback on what patient needs the HOBSCOTCH-PTE program should aim to provide. A second CES for care partners of PTE patients was conducted to solicit insight into care partner needs related to coping with PTE challenges. A neutral facilitator led participants in discussion, while a designated scribe documented the CES conversations and prepared summary notes. CES insights were presented to a panel of TBI and epilepsy providers who offered additional advice for the final HOBSCOTCH-PTE education module.
Results:
Participant experiences highlighted stress and uncertainty when navigating life after a PTE diagnosis. A need for both patient and care partner education around PTE was a commonality in participant feedback. Program content recommendations from patients included delivering education to care partners around what to expect after a loved one is diagnosed with PTE, such as cognitive dysfunction. Care partners expressed a common theme of burnout and need for tools to reduce care partner burden and stress (Table 2).
Conclusions:
The research-based CES format provided the opportunity to gather valuable insight from a diverse group of people with PTE and care partners around the needs which could be addressed by a self-management and cognitive training program. Participants were enthusiastic about the prospect of an evidence-based intervention specifically adapted for people with PTE, and care partners endorsed the opportunity to accompany their loved one in select parts of the 9-week HOBSCOTCH-PTE intervention. CES participant feedback and TBI/epilepsy expert panel input were incorporated into the final HOBSCOTCH-PTE intervention which is currently being evaluated in a nationally recruiting randomized-control trial.
Funding: This work was supported by Award W81XWH2110279 from the US Department of Defense (DoD).