Piloting innovative interventions for people with epilepsy

New clinical data from EpLink, available on Brain-CODE, provides a deep understanding of treatments that improve mental and emotional health in adults with epilepsy

One in three adults with epilepsy experience depressive symptoms. Medications and therapy have been shown to be effective in reducing depressive symptoms but people with epilepsy do not always have timely access to these treatment options.

To respond to this challenge, EpLink, the epilepsy research program of the Ontario Brain Institute (OBI), has released a clinical dataset containing assessments of adults with epilepsy and self-reported depressive symptoms. Gathered through EpLink’s foundational EpUp Study: A Pilot Intervention for People with Epilepsy & Depression, these data are now available on Brain-CODE, OBI’s state-of-the-art neuroinformatics platform.

The EpUp study dataset includes de-identified demographic information as well as medical history, medication logs, and validated clinical assessment scales related to mood, sleep, and quality of life.

"Ontario is investing in research and innovation across the province and recognizes how valuable collaboration and data are to our province’s researchers," said Jill Dunlop, Ontario’s Minister of Colleges and Universities. "The Ontario Brain Institute’s release of this new data is instrumental to supporting and accelerating future breakthroughs in research that can help people with epilepsy maintain a better quality of life – something all Ontarians deserve.”

“By releasing data collected from this foundational study, the Ontario Brain Institute aims to foster a better understanding of coping responses in people with epilepsy, which will lead to better treatment programs and more connected care,” said Dr. Tom Mikkelsen, OBI’s President and Scientific Director.

In the EpUp study, the EpLink team examined whether two distance-delivered programs – UPLIFT (Using Practice and Learning to Increase Favourable Thoughts), a mindfulness-based cognitive behavioural therapy (CBT) program, and EpINFO, a self-managed information program – would improve depressive symptoms and psychological quality of life in adults with epilepsy.

Consisting of semi-structured one-hour sessions, the UPLIFT program – led by two facilitators: a licensed mental health professional and a person living with epilepsy – was delivered once a week for eight weeks over the telephone in small groups of six to eight people. Common clinical scales were used to assess depression and psychological quality of life before and after treatment, and at short-term (six months) and long-term follow-up (one year) upon program completion.

From pre- to post-treatment, participants in both the UPLIFT and EpINFO groups reported significant decreases in depressive symptoms and improved psychological health. These data suggest that distance-delivery group intervention programs are effective at improving depression and psychological quality of life, with the EpINFO program offering benefits similar to the UPLIFT program.

“The EpUp study examined whether psychoeducation programs, which provided people with a better understanding of epilepsy, emotions and coping skills, improved emotional health in adults affected by the condition,” said Dr. Kathryn Hum, one of EpUp’s leads. “We were very pleased to see improvements in depressive symptoms following participation in the psychoeducation programs.”

The success of this foundational study has led to a partnership between OBI and Epilepsy Ontario to scale the UPLIFT program to areas of the province with limited local mental health programming.

OBI and EpLink invite all interested researchers to use this dataset in their own research to advance our collective understanding of epilepsy and enhance care for those impacted by it.

View the poster for this dataset or explore the EpUp study data as well as OBI's other datasets on Brain-CODE.