Authors :
Presenting Author: Hemani Koppolu, MPH – Dartmouth Health
Sarah Kaden, BA – Dartmouth Health
Laura De Muro, MS, CHW – Dartmouth Health
Trina Dawson, BA – Dartmouth Health
Meredith Olenec, BA, CHW – Dartmouth Health
Maggie Ellison, BA – Dartmouth Health
Kathryn Giordano, MPH – Dartmouth Health
Jessica DeNaples, MPH – Dartmouth Health
Doreen Guilette, – Dartmouth Health
Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth Health
Rationale:
People with epilepsy (PWE) often face psychosocial challenges, including higher rates of mental illness than the general population, and increased social determinants of health (SDOH) needs. HOBSCOTCH (HOme-Based Self-Management and COgnitive Training CHanges Lives) is an evidence-based epilepsy self-management (ESM) program that improves the lives of PWE by helping them manage memory challenges and build skills for greater independence. Recent infrastructure developed at the HOBSCOTCH Institute (HI) allows for ESM program coordinators/CHWs to screen for participant needs and link PWE to key resources. This study examines the members of medical teams caring for PWE in a national sample of ESM participants to better address bridging systemic care gaps and maximizing whole person care.
Methods:
PWE (n=917) were referred to the HI by providers (n=698), community partners (n=51), or self-referred (n=168) and reached via telehealth outreach by a HI coordinator/CHW for a prescreen enrollment call between 03/27/2024-08/18/2025. During this call, self-report demographic and disease variables collected, included epilepsy severity (GASE scale), seizure control, treatments, care team composition; and screening for key SDOH occurred.
Results:
Participants (age: M=44.14, SD=15.12, range=16–83; 55% women; 43% working, 14% retired, 7% in school, 10% unemployed, 33% unable to work secondary to epilepsy (Table 1)) resided in all 50 states, Washington DC, and 7 additional countries. Seizure control was mixed (51% controlled, 45% uncontrolled, 4% not sure), as was seizure severity (19% extremely severe/very severe, 43% quite/moderately severe, 28% somewhat/a little severe, 10% not severe). Participants reported treatments received for their epilepsy, including medication (96%), surgery (28%), neurostimulation (10%), and medically-prescribed diet (6%). The majority of participants reported (Figure 1) care via a neurologist (96%), and a primary care provider (90%). Only 32% reported an epilepsy specialist on their care team, and 19% indicated care from a nurse at an epilepsy clinic. Despite high rates of mental health comorbidities in PWE, only 23% had a psychiatrist, 19% had a psychologist, and 17% had a mental health counselor; and only 7% had a social worker on their team to assist with SDOH.Conclusions:
This study highlights prevalent gaps in whole person care in a national cohort of PWE. There is a high priority need for infrastructure and programs that connect PWE to mental health care and SDOH support. HI coordinators/CHWs and Coaches build close, trust-based relationships with PWE, allowing them to identify unmet needs and guide participants to additional resources and services. With innovative integration of screening and resource navigation at HI, we are developing pathways to ensure that ESM participants can gain access to supports that they may struggle to obtain, strengthen connections across epilepsy care, and improve the overall wellbeing of PWE.Funding:
Centers for Disease Control and Prevention 1NU58DP007541-01-00