The goal of this study is to identify the needs and barriers to accessing and undergoing epilepsy surgery for patients with epilepsy and then to pilot an educational program regarding the social determinants of health and how they can influence surgical rates and epilepsy outcomes.
For the first part, patients (age 18+) and providers will be asked to complete surveys and participate in focus groups to identify gaps and barriers that limit access to and use of epilepsy surgery.
For piloting the education program, patients (age 18+) at the Cleveland Clinic Epilepsy Monitoring Unit will be randomized to intervention or control. Those in the intervention group, in addition to their usual care, will also receive educational materials on social determinants of health and their influence on surgical rates and epilepsy outcomes. Those in the control group will receive their usual care. Both groups will be asked to fill out surveys and questionnaires at the beginning of their stay, at the end of their stay, and if they elect to have surgery, 12 months after surgery.
Epilepsy diagnosis
Completion of epilepsy surgical evaluation at Cleveland Clinic
Recommendation for resective/ablation surgery or implantation of neurostimulation device
At least 18 years old
Previous epilepsy surgery or implantation of neurostimulation device
Unable to fluently read English
Has evidence of dementia or intellectual disability that would interfere with patient's understanding of surveys
Unable to fluently read English
Sequential
PEERS Program
BehavioralThis is a video-based intervention complemented by additional education materials, focusing on educating people with epilepsy on the impact of social determinants of health on epilepsy surgery and outcomes
Surveys
Other interventionParticipants will receive surveys to assess barriers to accessing epilepsy care
Focus group
Other interventionParticipants will participate in focus groups to further identify barriers associated with lack of access and utilization of epilepsy surgery
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Treatment groupsSee each treatment group below.
Part 2a: Identify primary barriers to accessing and undergoing epilepsy surgery
People with epilepsy and providers will be asked to complete a roughly 20 minutes online survey (providers receive a different form of the survey than what patients receive)
Part 2b: Further identify barriers associated with lack of access and utilization of epilepsy surgery
People with epilepsy and epilepsy providers (both from within Cleveland Clinic and from the outside community) will be asked to fill out surveys and participate in focus groups with semi-structured interviews
Part 3: Determine acceptability of PEERS Program
Acceptability will be measured by baseline and post-intervention assessment completion, with success defined as greater than 80% of participants completing both assessments.
Part 3: Determine satisfaction of PEERS Program
Measured by the Client Satisfaction Questionnaire (Min-Max 8-32, higher number is greater satisfaction)
Part 2b: Reporting of social needs
The Accountable Health Communities Health-Related Social Needs Screening Tool will be used to assess participants' reporting of social needs. This is a screening tool so there are no high/low values or total score
Part 3: Reporting of social needs
The Accountable Health Communities Health-Related Social Needs (HRSN) Screening Tool will be used to assess participants' reporting of social needs. This is a screening tool so there are not high/low values or total scores
Part 2b: To assess knowledge of epilepsy surgery
Measured by responses to the Epilepsy Surgery Knowledge Questionnaire (min/max 0-10; higher scores indicate higher knowledge)
Part 3: To assess knowledge of epilepsy surgery
Measured by responses to the Epilepsy Surgery Knowledge Questionnaire (min/max 0-10; higher scores indicate higher knowledge)
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