Rationale:
Unfortunately, people with epilepsy (PWE) face multiple challenges including complex medication regimens, co-morbid depression, and persistent stigma(1). While resilience has been linked to improved quality of life and clinical outcomes(2), there are limited structured interventions to build resilience specifically designed for PWE. To address this gap, Living Well With Epilepsy (LWWE) has partnered with Epilepsy Wellness Advocates / Charles L. Shor Foundation to pilot a Dialectical Behavioral Therapy (DBT)-informed, peer-delivered epilepsy coaching program to assess feasibility and early impact when delivered virtually. The current analysis examines preliminary data from this pilot project.
Methods:
This was a prospective single-arm pilot feasibility study of virtual DBT-informed epilepsy coaching for adults with epilepsy. Participants aged 18–70 living in the US were recruited via Living Well With Epilepsy and screened for eligibility. Enrolled participants received a 4-session DBT-informed epilepsy coaching program delivered virtually by a peer coach with epilepsy. Each program was completed in ~3 months. Pre- and post-intervention surveys included the Brief Resilience Scale(3) (primary outcome) and secondary measures of mood, seizure activity, medication adherence, and confidence in self-management. Feasibility outcomes included enrollment rate, survey completion, and patient satisfaction.
Results:
To date, 132 eligible participants have completed the interest form (85% female / 15% Male; mean age 43, range 19-71). Of the 39 (29%) participants who have scheduled an introductory call, there are 28 (21%) who have enrolled, completed their pre-coaching survey and begun coaching. At baseline, among the 28 enrolled participants, 15 (53%) had low resilience scores (1.00 – 2.99), 13 (47%) had normal resilience scores (3.00 – 4.30) and 0 had a high score (4.31 – 5.00) 4. To date, 12 enrolled participants (42% of enrolled) have completed the program (introductory call, 4 sessions, pre- and post- coaching survey). In comparing pre vs post coaching surveys 8 (66%) showed improvement in their resilience scores. Notably, 4 (33%) showed an improvement from Low resilience to Normal resilience, and 2 showed a more than 40% improvement within their respective category of either low or normal resilience. Clinically meaningful changes included reduced seizure frequency (weekly → monthly) in one participant and resolution of suicidal ideation in another. Feasibility indicators were strong among enrolled participants both survey completion and participant satisfaction were 100%.
Conclusions:
Preliminary findings suggest that virtual DBT-informed epilepsy coaching is feasible, acceptable, and may enhance resilience and mental health in adults with epilepsy. Early signals of clinical benefit (seizure reduction, reduced suicidal ideation) warrant further investigation. Larger controlled studies are needed to confirm efficacy and inform scalability.
Funding:
Support provided by the Epilepsy Wellness Advocates/Charles Shor Foundation for Epilepsy Research to Living Well With Epilepsy (LWWE) to develop this pilot project.