Innovative approaches reaching underserved and rural communities to improve epilepsy care: A review of the methodology of the Connectors Project.

OBJECTIVE: The Connectors Project, a collaboration between the Epilepsy Foundation and UCB Pharma, was a multiyear project designed to improve epilepsy care in underserved communities. A core objective of the Connectors Project was to pilot new and innovative approaches to epilepsy awareness and education in rural and underserved areas, including standardized curricula for healthcare providers and patients. METHODS: A series of consensus conferences explored opportunities and barriers to epilepsy care throughout the United States including access to local Epilepsy Foundations, neurologists, and epilepsy centers. Data from QuintilesIMS™ were examined for access to newer antiepileptic drugs (AEDs)-a proxy for quality of epilepsy care-in different regions. State factors (e.g., local epilepsy foundation office, access to newer vs. older AEDs, and geographic density and diversity) were used in selecting four states as examples of rural and underserved areas to pilot the awareness and educational programs. For each state, a work team assessed challenges and opportunities, tailored educational curricula, and developed strategies for effective delivery of the educational programs. Interventions were held between June 2016 and June 2017. Interventions consisted of outreach and awareness programs, in-person health education to healthcare providers and patients/families, and digital health education. RESULTS: Michigan, Nevada, Oklahoma, and West Virginia were identified as pilot states representing geographically diverse areas, ranging from a state with a large high-density population center with several epilepsy centers and a local Epilepsy Foundation office (Michigan) to a state with predominately rural areas and a few small urban cores, two epilepsy centers, and no in-state Epilepsy Foundation office (West Virginia). State work teams tailored interventions and examined options for type, intent, ease of use, and impact. All states implemented outreach and awareness initiatives and in-person health education for patients and healthcare providers; use of digital health education was variable. Measurement of the interventions was agreed to be performed by the use of patient and physician surveys and reevaluation of data from QuintilesIMS for access to newer AEDs. CONCLUSION: Local Epilepsy Foundation offices successfully connected healthcare providers in rural and underserved areas to epilepsy education designed to enhance quality care in epilepsy. Educational opportunities for people with epilepsy and their families addressed critical gaps in accessing quality epilepsy care and self-management. Tailored and innovative educational approaches can be used to increase awareness levels and to overcome geographic challenges in reaching underserved populations. Relationship building and repeated, consistent engagement with healthcare providers and patients can assist in improving communication and self-management skills among patients with epilepsy.

Fostering epilepsy self management: the perspectives of professionals.

Epilepsy clinical, academic, and human service professionals (N = 101) were surveyed regarding the challenges people with epilepsy face managing their condition. 30% of the respondents had personal experience with epilepsy. Interviews were transcribed and coded into themes. Response differences by profession and personal experience were examined using chi-squared tests. The two greatest challenges reported most frequently for people with epilepsy were finding high quality health care and managing psychological and emotional effects. The two most important epilepsy outcomes were seizure control and quality of life. The two greatest challenges facing clinicians were too little time with patients and limited clinical focus. The two main weaknesses in the field were insufficient research and narrow approaches to addressing epilepsy. Significant differences in responses across professions were evident as were differences according to personal experience with epilepsy. Few clinicians cited quality of care as a major challenge (p<0.0001) compared to other professions. Few respondents with personal experience with epilepsy cited stigma as a challenge (p = 0.006).