Authors :
Trina Dawson, BA, CHW – Dartmouth Hitchcock Medical Center; Elaine Kiriakopoulos, MD, MSc – Assistant Professor, Neurology, Geisel School of Medicine at Dartmouth, Darmouth Hitchcock Medical Center; Felicia Chu, MD – Assistant Professor, Neurology, University of Massachusetts Chan Medical School, Umass Memorial Medical Center; Barbara Glidden, CCRC – University of Massachusetts Chan Medical School, Umass Memorial Medical Center; Barbara Jobst, MD, Dr.Med, FAAN, FAES – Professor and Chair, Neurology, Geisel School of Medicine at Dartmouth, Dartmouth-Hitchcock Medical Center
Rationale: Epilepsy is a complex spectrum of disorders characterized by recurrent seizures, but seizures are not the only challenge that people with epilepsy (PWE) face. PWE are confronted with complex medication regimens, lifestyle adjustments, co-morbidities, disability, unemployment, limited access to transportation, and stigma. A growing body of evidence suggests CHWs can assist patients with care coordination, disease management, increasing health behaviors and knowledge, and reducing barriers to accessing care
. The 2012 IOM Report on Epilepsy noted nontraditional health providers, including CHWs offer untapped opportunities for improving outcomes in epilepsy. Understanding clinician perception of benefit and sustainability of integrating CHWs is required to assess readiness for new models of epilepsy care to emerge.
Methods: Digital surveys developed and content validity established to collect information from clinical providers (n= 65) (physicians (58%), nurses (20%), social workers (8%) and neuropsychologists (6%) and epilepsy fellows (5%). New England (MA, NH, VT, ME, CT, RI, NY) epilepsy centers were identified through published NAEC registry. Center leaders were contacted with survey link and subsequent snowball sampling utilized to obtain multidisciplinary input. 60% of participants indicated >50% of practice dedicated to PWE. 62% indicated having cared for PWE > 5 years. 66% practiced via team-based model, 19 % via physician-based care and 15% physician/nurse combined care. To assess readiness for integrating CHWs providers queried regarding CHW roles, gaps in care related to SDoH, confidence in CHW assisting PWE, benefits of CHW as team members, and knowledge of funding to sustain CHW presence.
Results: 52% of participants indicated an awareness of CHW roles, or services they provide. 37% shared firsthand experience with CHWs. 85% saw benefit to integrating a CHW onto epilepsy team. 88% were not aware of a funding mechanism to support a CHW at epilepsy center. 71% felt they would be confident in a CHW handling sensitive health, financial or other personal patient information. Providers indicated that if a CHW were trained in epilepsy that confidence in their ability to benefit patients would be high (54%)/very high (38%). 95% of respondents felt patients would benefit from dedicated non-medical team member addressing SDoH. 97% indicated addressing SDoH would benefit patients’ health and 95% responded they would refer patients to a clinic based CHW.
Conclusions: Despite limited understanding of CHW roles or firsthand experience with CHWs, clinician perception of integration of CHW were positive with a strong indication that clinicians would refer patients to a CHW. Awareness of funding for CHW role was limited. Further efforts are required to augment provider knowledge of CHW role. Providing a model for integration of CHW onto epilepsy teams and sharing pathways supporting CHW funding and sustainability may improve efforts to address SDoH and outcomes for PWE.
Funding: CDC- U48DP006381-02-01 SIP20-006