Evaluating Access, Engagement and Reach: Findings from the HOBSCOTCH Institute Translational Network Capacity Building Project
Abstract number :
1.127
Submission category :
17. Public Health
Year :
2025
Submission ID :
282
Source :
www.aesnet.org
Presentation date :
12/6/2025 12:00:00 AM
Published date :
Authors :
Presenting Author: Elaine Kiriakopoulos, MD, MPH, MSc – Dartmouth Health
Laura De Muro, MS, CHW – Dartmouth Health
Trina Dawson, BA – Dartmouth Health
Sarah Kaden, BA – Dartmouth Health
Meredith Olenec, BA, CHW – Dartmouth Health
Barbara Jobst, MD, Dr. MED, FAES, FAAN – Dartmouth Health
Anna Graefe, PhD – Dartmouth Health
Jonathan Kleen, MD, PhD – University of California, San Francisco
Eva Alden, PhD – Mayo Clinic - Rochester MN
Danielle Carns, PsyD – University of Pittsburgh Medical Center
Felicia Chu, MD – University of Massachusetts Medical Center
Megan Selvitelli, MD – MaineHealth Medical Group
Karen Secore, MS APRN – Santa Barbara Cottage Hospital
Janet Greenwood, PA – Keck USC Epilepsy Center
Jeffrey Britton, MD – Mayo Clinic, Rochester MN, USA.
Cady Block, PhD – Mayo Clinic - Florida
William Tatum, DO – Mayo Clinic in Florida
David Sabsevitz, PhD – Mayo Clinic - Florida
Laura Flashman, PhD – Wake Forest Baptist Health
Cormac O'Donovan, MD – Wake Forest Baptist Health
Fadi Tayim, PhD – Premier Health Clinical Neuroscience Institute
Daniel Weber, DO – St. Louis University School of Medicine
Kaarkuzhali Krishnamurthy, MD – Boston Medical Center
Elizabeth Blocker, DNP – St. Elizabeth's Medical Center
Moushin Shafi, MD – Beth Israel Deaconess Medical Center
Dona Locke, PhD – Mayo Clinic Arizona
Katherine Noe, MD, PhD – Mayo Clinic
Hamada Altalib, DO – VA Connecticut Healthcare System
Jill Stuart, PhD – Duke University
Stephanie Towns, PsyD – Yale School of Medicine
Ginger Mills, PsyD – Yale School of Medicine
Johanna Messerly, PsyD – UTHSCSA
Joseph Ta, MD – University of Pittsburgh Medical Center
Dennis Obat, MD – University of California, San Francisco
Lisa Feely, MS – Dartmouth College
Laura Bernstein, PhD – Dartmouth College
Sharon O'Connor, MBA – Dartmouth College
Rationale: Epilepsy self-management (ESM), inclusive of the HOBSCOTCH (HOme Based Self-Management and COgnitive Training CHanges Lives) intervention, has a strong evidence base demonstrating people with epilepsy (PWE) experience improvements in quality of life (QOL), cognition, self-efficacy, seizure control and mood via ESM programming. Despite this evidence, the epilepsy field lags behind other chronic diseases in the implementation of self-management supports in clinical settings, likely in part due to a lack of infrastructure guiding contextual implementation. This study evaluates the HOBSCOTCH Institute Translational Network (HITN), a Hub and Spoke network of 18 U.S. epilepsy centers established in October 2023.
Methods: PWE were referred by HITN clinicians between 10/2023-04/2025 (n=518 to HI Hub, n=120 to onsite Spoke delivery). Referrals have steadily increased since founding the HITN, and referrals received in the first two quarters of Year 2 (n=285) are near double those received in Year 1 (n=151) (Fig1). Of PWE referred to HI, n=431 were screened (secure REDCap database) by a coordinator (remaining n=87 in process) to assess for interest, provide details of program participation, and gather disease variable self-report data (Table 1) including, epilepsy severity (GASE scale), seizure type and control, treatments, and care team composition. The Area Deprivation Index (ADI) percentile was calculated using geographic data collected.
Results: PWE screened by a HI coordinator resided in 36 states (age M=45.29, SD=15.17; female=52%). ADI percentiles analyzed ranged from 1-100 (low=24%, moderately low=33%, moderately high=23%, high=9%); and 36% of referrals reported being unable to work secondary to epilepsy. Epilepsy severity varied, with 29% reporting extremely/very/quite severe epilepsy, 38% reporting moderately/somewhat severe, and 17% reporting a little/not at all severe. A slim majority (53%) reported uncontrolled seizures. Most (97%) had received treatment with antiseizure medication, and 32% had a history of epilepsy surgery. Prior experience with ESM programs was very low (3%). In total, 63 providers at HITN sites have received HOBSCOTCH Cognitive Coach training and all 18 sites have received targeted epilepsy center education.
Conclusions: The HITN facilitates clinician referral and patient access to ESM support, reaching PWE residing in deprived areas. Robust increase in clinician referrals and engagement of providers in Cognitive Coach training reflects clinical teams are committed to sharing ESM with their patients and that pathways created for referral to ESM are easily accessed. A Hub and Spoke model allows epilepsy centers to pace building local capacity within the context of onsite bandwidth, with HI infrastructure absorbing overflow referrals and supporting interventionists. Collaborative network efforts share promise for growing systems capacity to extend ESM access equitably.
Funding: Funding Source: Centers for Disease Control and Prevention 1NU58DP007541-01-00
Public Health