The IMPACT epilepsy Consortium: Exploring social drivers of health in epilepsy care to advance solution based initiatives
Year: 2026
Type: article
Study design: Observational Study
Abstract: RATIONALE: Social determinants of health (SDOH) are increasingly recognized as critical drivers of disparities in epilepsy care, yet systematic approaches to identifying and addressing social needs in clinical settings remain limited. The IMPACT Epilepsy Consortium conducted pilot surveys to characterize SDOH challenges faced by people with epilepsy (PwE) and the perspectives of clinicians who provide epilepsy care. METHODS: Two REDCap‑based digital surveys were distributed nationally: one to healthcare providers across epilepsy specialties and another to PwE and caregivers. Surveys assessed perceived social needs, barriers to care, screening practices, and lived experiences relevant to SDOH. RESULTS: A total of 113 epilepsy providers and 112 community respondents participated. Providers most commonly identified transportation limitations, rural residence, behavioral health needs, and financial instability as key barriers affecting epilepsy care. Screening for social needs was inconsistent. Community respondents reported substantial unmet needs, including food insecurity, housing instability, transportation challenges, and difficulties navigating healthcare systems. Nearly one‑third reported that providers never asked about social needs, and many described limited support in addressing barriers. Open‑ended responses highlighted five major content categories: access to care, transportation burden, loss of autonomy and social isolation, mental health challenges, and distrust or negative experiences with healthcare providers. DISCUSSION: Findings reveal misalignment between provider awareness of SDOH and consistent action to address them, underscoring the need for standardized screening, improved care coordination, and expanded community‑engaged strategies. The goal of the IMPACT Consortium is to develop pathways to reduce disparities and strengthen clinic‑to‑community support for PwE.
Source: Epilepsy & Behavior
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: hybrid
Estimated APC paid: $3,060
Funders: U.S. Department of Defense, Burroughs Wellcome Fund, American Epilepsy Society, Cleveland Clinic, Cleveland Clinic Foundation, Canada Research Coordinating Committee, Epilepsy Society, National Institutes of Health, Centers for Disease Control and Prevention, National Institute on Aging, National Institute of Neurological Disorders and Stroke, Congressionally Directed Medical Research Programs, Cleveland Clinic Epilepsy Center
Awards: G2196128204, G2228256040, G2450930609, G3057790581, INCREASING EPILEPSY SELF-MANAGEMENT ACCESS BY EMBRACING A HUB AND SPOKE MODEL - THE PURPOSE OF THE PROPOSED PROJECT IS TO INCREASE HEALTH SYSTEMS CAPACITY TO MAKE THE HOBSCOTCH (HOME BASED SELF-MANAGEMENT AND COGNITIVE TRAINING CHANGES LIVES) PROGRAM ACCESSIBLE TO PEOPLE WITH EPILEPSY (PWE) AND COGNITIVE DYSFUNCTION AND THE CLINICIANS WHO CARE FOR THEM. WE WILL UTILIZE A SCALABLE HUB AND SPOKE ORGANIZATIONAL DESIGN WHICH SUPPORTS DIVERSE CLINICAL SITE ADOPTION AND STANDARDIZED REFERRAL PATHWAYS. FOR EVIDENCE BASED EPILEPSY SELF-MANAGEMENT (ESM) PROGRAMS TO BE TRANSLATED FROM SCIENCE TO SERVICE DELIVERY A PROCESS OF LOCAL ADAPTATION THAT SERVES TO INCREASE THE RELEVANCE AND MEANING TO PATIENTS, PROVIDERS AND PRACTICES WILL BE REQUIRED. HOBSCOTCH IS AN EVIDENCE-BASED ESM WHICH TARGETS COGNITIVE DYSFUNCTION IN ADULTS WITH EPILEPSY. THE PROGRAM IS DELIVERED BY A TRAINED COGNITIVE COACH (PSYCHOLOGIST, APRN), ONE-TO ONE, BY TELEHEALTH INCORPORATING ONLINE AND TELEPHONE COMPONENTS. IT IS DESIGNED TO ASSIST PWE MANAGE AND COPE WITH THEIR COGNITIVE PROBLEMS IN ORDER TO LEAD HAPPIER MORE PRODUCTIVE LIVES. THE HOBSCOTCH INTERVENTION, AT BASELINE, REPRESENTS AN INNOVATIVE WAY OF ADDRESSING NEUROCOGNITIVE DIFFICULTIES AND IMPROVING QUALITY OF LIFE IN PEOPLE WITH EPILEPSY. THE PROPOSED PROJECT BUILDS ON THE FOUNDATIONAL WORK OF THE HOBSCOTCH INSTITUTE, BY BRINGING TOGETHER A NETWORK OF PARTNERS COMMITTED TO IMPROVING THE LIVES PWE. THE PROJECT WILL TARGET BUILDING STREAMLINED MECHANISMS FOR PROVIDER ENGAGEMENT, ADOPTION SUPPORT AND PATIENT REFERRAL TO HOBSCOTCH IN TWO CLINICAL SETTINGS. THE FIRST SETTING, DIVERSE US EPILEPSY CENTERS WITH CLINICIANS AND RESEARCHERS WITH EXPERTISE IN EPILEPSY CARE IN 14 STATES (NC, MA, CA, GA, ME, FL, AZ, MN, CT, OH, PA, NH, TX, MO) AND THE SECOND SETTING, A NORTHERN NEW ENGLAND COOPERATIVE OF COMMUNITY AND FAMILY MEDICINE NETWORK OF PRACTICES CARING FOR PEOPLE WITH EPILEPSY IN RURAL AND UNDERSERVED AREAS. THE FRAMEWORK FOR THE PROJECT SUPPORTS THE GOALS AND INTENT OF THE CDC’S BUILDING CAPACITY FOR IMPLEMENTING EVIDENCE-BASED EPILEPSY SELF-MANAGEMENT SUPPORTS IN HEALTH CARE SETTINGS (COMPONENT 1) BY UTILIZING THE COMBINED RESOURCES AND DEPTH OF EXPERTISE AT THE HOBSCOTCH INSTITUTE, DARTMOUTH HEALTH, THE DARTMOUTH INSTITUTE AND DARTMOUTH COLLEGE TO DEVELOP PARTNERSHIPS WITH HEALTHCARE ORGANIZATIONS AND OTHER INTERESTED AND AFFECTED GROUPS FOR INTERVENTION IMPLEMENTATION, AND TO COORDINATE AND IMPLEMENT EVIDENCE-BASED EPILEPSY SELF-MANAGEMENT SUPPORTS USING BEST PRACTICE STRATEGIES FOR HEALTH SYSTEM CHANGE. OUR APPROACH WILL BE COLLABORATIVE WITH A ROBUST CENTRAL HUB OF SUPPORT BEING THE HOBSCOTCH INSTITUTE, AND THE SPOKES INCREASING OUR POTENTIAL TO ADDRESS DISPARITIES THROUGH ESM SUPPORT THAT REACHES RURAL, URBAN, DISADVANTAGED AND UNDERSERVED COMMUNITIES, AND PEOPLE WITH EPILEPSY ACROSS THE LIFESPAN AND THOSE WITH COMORBID DISABILITIES. PROJECT OUTCOMES WILL INCLUDE IMPROVED AWARENESS OF TELEHEALTH DELIVERABLE SELF-MANAGEMENT SUPPORTS FOR HEALTH PROFESSIONALS AND PWE, INCREASED PROVIDER REFERRALS FOR EVIDENCE-BASED ESM HOBSCOTCH, INCREASED IMPLEMENTATION OF HOBSCOTCH IN CLINICAL SETTINGS, INCREASED USE OF QUALITY IMPROVEMENT STRATEGIES OR TOOLS TO ENSURE EFFECTIVE PROGRAM ACCESS AND IMPLEMENTATION, IMPROVED COMPLETION OF EVIDENCE-BASED ESM SUPPORTS AMONG PWE AND COGNITIVE DYSFUNCTION, IMPROVED QUALITY OF LIFE AND HEALTH OUTCOMES FOR PWE AND COGNITIVE DYSFUNCTION, DECREASED HEALTH CARE UTILIZATION COSTS AND INCREASED USE OF APPROPRIATE COMMUNITY SUPPORTS. THIS PROJECT HAS POTENTIAL FOR REPLICABLE MODELS IN PRIMARY CARE AND AT EPILEPSY CENTERS TO EMERGE, AND SHARES AN INNOVATIVE MODEL THAT ENGAGES PSYCHOLOGY TRAINING PROGRAMS TO GROW SUSTAINABILITY., G4417428651, Stroke Rehabilitation utilizing BCI technology, G551887885, G6024075114, G6459156647, BUILDING CAPACITY FOR IMPLEMENTING EVIDENCE-BASED SELF-MANAGEMENT PROGRAMS FOR EPILPESY - PEOPLE WITH EPILEPSY FACE MANY CHALLENGES IN THEIR DAILY LIVES. SELF-MANAGEMENT CAN HELP THEM BETTER MANAGE THEIR DISEASE AND SELF-MANAGEMENT PROGRAMS HAVE BEEN SHOWN TO IMPROVE KNOWLEDGE AND BEHAVIORAL OUTCOMES SUCH AS PROBLEM SOLVING, SYMPTOM MONITORING, AND REDUCE SEIZURE FREQUENCY AND CO-MORBIDITIES SUCH AS DEPRESSION. HOWEVER, THERE IS LIMITED RESEARCH ON HOW BEST TO DISSEMINATE THESE EVIDENCED-BASED, EPILEPSY SELF-MANAGEMENT PROGRAMS FOR PWES. THE PURPOSE OF THIS PROJECT IS TO ASSESS THE IMPACT OF THESE PROGRAMS ON PWE AND ON THE CAPACITY OF HEALTH SYSTEMS TO DELIVER THESE PROGRAMS THROUGH A MIXED METHODS IMPLEMENTATION EVALUATION. THE EXAMINATION OF THE EFFECTIVE PROCESSES AND SHARED LEARNING FROM THE LEARNING COLLABORATIVE WILL HELP INFORM THE SCALABILITY OF THESE TYPES OF SELF-MANAGEMENT PROGRAMS IN HEALTHCARE SETTINGS AT THE NATIONAL LEVEL. THE SPECIFIC AIMS FOR THIS RESEARCH ARE TO: AIM 1. COORDINATE AND IMPLEMENT PROJECT UPLIFT AND HOBSCOTCH IN PARTNERSHIP WITH TWO EMORY HEALTH SYSTEMS AND ASSESS OPTIMAL IMPLEMENTATION STRATEGIES FOR PROGRAM DELIVERY THROUGH ASSESSMENT OF CLINICS; AIM 2A. CONDUCT AN OUTCOME EVALUATION OF BOTH PROGRAMS USING A RETROSPECTIVE PRETEST, POSTTEST DESIGN ON DEPRESSION, COGNITIVE FUNCTION, QUALITY OF LIFE, SELF-MANAGEMENT BEHAVIORS AND SEIZURE CONTROL AND A PROCESS EVALUATION OF THE IMPLEMENTATION OF EVIDENCE-BASED SELF-MANAGEMENT PROGRAMS AND SUPPORTS IN EMORY HEALTH SYSTEMS; 2B. CONDUCT IMPLEMENTATION EVALUATION ON MODELS OF PROGRAM DELIVERY FOR REFERRAL AND DIMENSIONS OF THE RE-AIM FRAMEWORK THROUGH A MIXED METHODS EVALUATION; AND AIM 3. PARTICIPATE IN THE PROJECT LEARNING COLLABORATIVE TO SHARE EMORY PROJECT PROCESS, LESSONS LEARNED AND DISSEMINATE OUR FINDINGS AND LEARN FROM OTHER SITES AND EVALUATE CAPACITY-BUILDING AMONG OUR CLINICAL PARTNERS. UNDER COMPONENT 1,THIS PROJECT WILL BUILD THE CAPACITY OF HEALTH SYSTEMS IN THE ATLANTA AREA TO OFFER SELF-MANAGEMENT PROGRAMS AND SUPPORTS TO DIVERSE PWE . IT WILL ADVANCE IMPLEMENTATION RESEARCH ON THE ADOPTION OF THESE TYPES OF PROGRAMS IN HEALTHCARE SETTING AND ALSO IDENTIFY THE OPTIMAL ORGANIZATIONAL MODELS OF REFERRAL AND DELIVERY AND FACILITATORS FOR IMPLEMENTATION OF EVIDENCE-BASED EPILEPSY SELF-MANAGEMENT PROGRAMS., G7731734667, G8652053725, G8883552228
OpenAlex ID: W7165116755