National Needs Assessment and Strategic Agenda for Children and Youth with Epilepsy

Executive Summary

Overview
The American Academy of Pediatrics serves as the National Coordinating Center for Epilepsy through a cooperative agreement with the Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau (MCHB). The Center supports professionals working to improve access to coordinated, comprehensive and quality care for children and youth with epilepsy (CYE). As part of the current Innovations in Access to Care for Children and Youth with Epilepsy project, the Center was tasked with conducting a national needs assessment. The needs assessment sought to determine the perception of existing gaps and challenges in health care for CYE, along with the assets, resources, capabilities, and strengths that patients, their families, and health care providers possess. This executive summary presents methodology, high-level results and recommendations.
Methods
Center staff utilized a mixed methods approach to conduct the needs assessment between March and June 2021. Quantitative data was collected through anonymous SurveyMonkey questionnaires. Focus groups and key informant interviews were conducted virtually via Zoom by Center staff. Participants were recruited through a variety of internal and external channels, including AAP News OnCall, various social media platforms and stakeholder/partner promotional efforts. Participants included parents/caregivers of children and youth with epilepsy (CYE) (n=337), young adults living with epilepsy (n=116), health care providers (n=40), and CYE Advisory Committee members (n=9).
Results
Demographics:
• Most parents/caregivers identified as being White, non-Hispanic (63.2%) and reported having private insurance (60.7%). A plurality reported living in a suburban setting (45.7%) and having their child’s epilepsy diagnosis occur more than three years ago (37.7%).
• The majority of young adult respondents identified as White, non-Hispanic (72.7%), had private insurance (55.5%), and reported that their epilepsy was diagnosed more than three years ago (75.5%). A plurality was between 20 and 24 years of age (42.7%) and lived in the suburbs (48.2%).
• Most AAP member survey respondents were medical doctors (71.0%). The respondents were nearly evenly split between primary care (51.6%) and neurology (48.4%), and most provided care exclusively to pediatric patients (74.2%).
Access to Care:
• When evaluating different aspects of access to care, parents/caregivers rated getting “necessary care, tests, and treatments” from their medical team most favorably and being able to “schedule an appointment with a specialist” least favorably. Access to care barriers experienced by parents/caregivers of CYE included lack of access to specialty care, not being taken seriously by primary care and specialty care providers, and difficulty accessing the provider directly.
• Young adults rated being able to “schedule an appointment for illness/injury as soon as needed” most favorably and getting “necessary care, tests, and treatments” least favorably. Young adults stated feeling like the “doctor did not respect me;” lack of trust/connection with doctor; and having to change doctors multiple times before finding one whom the young adult felt understood/respected them.
• Access to care barriers noted by health care providers and stakeholders included geographic/transportation-related barriers for patients and families, capacity-related barriers, and patient-related barriers.
Telehealth:
• More than half of parents/caregivers (55.20%) cited being seen/having their questions answered sooner as a major benefit of telehealth. Other key telehealth benefits for parents/caregivers included having their child miss fewer school hours (46.2%), missing fewer work hours (45.2%), and feeling less stressed/burdened (44.8%). For appointment preference among parents/caregivers, 41.6% preferred telehealth visits, 42.5% preferred in-person visits, and 16.0% had no preference. Overall parent/caregiver experiences with telehealth were positive, comfortable, and convenient.
• More than half of young adult respondents (56.30%) cited being seen/having their questions answered sooner as a major benefit of telehealth. Other key telehealth benefits for young adults included fewer out of pocket expenses (40.6%), feeling less stressed/burdened (34.4%), and missing fewer work hours (31.3%). For appointment preference among young adult respondents, only 24.6% preferred telehealth visits, while 64.6% preferred in-person visits, and 10.8% had no preference. Most young adults reported that they prefer in-person appointments, but they also acknowledged that telehealth is easier and more efficient.
• When asked about telehealth barriers and benefits, half of the AAP member respondents (50.0%) cited patient technology as a major barrier to telehealth. Perceived minor barriers included clinic technology (59.1%), patient preferences (59.1%), and cultural and language barriers (54.6%). Benefits of telehealth include eliminating the need for patients to travel and enabling providers to see patients in their home environment.
Quality of Care:
• While parents/caregivers generally perceived quality of care favorably, their experiences with seizure action plans were less positive than overall health care, primary care, and specialty care. The most significant quality of care issue raised by parents/caregivers was not being respected and not being taken seriously by the provider.
• Overall, young adults rated quality of care less favorably than did parent/caregiver respondents. Of all quality of care items assessed, experiences with seizure action plans were rated least favorably. Young adults reiterated that not being respected and not being taken seriously by the provider was their most pressing quality of care concern.
• Health care providers and CYE Advisory Committee members indicated that the best way to impact quality of care is to improve primary care provider (PCP) ability to diagnose and treat epilepsy. When asked a series of knowledge and confidence questions, PCPs were most knowledgeable about knowing when to refer to a specialist and least knowledgeable about creating a health care transition office policy. Similarly, PCPs were most confident about knowing when to refer patients with epilepsy to a specialist and least confident about managing side effects of medications for CYE.
Shared Decision-making:
• For parents/caregivers, shared decision-making (SDM) was positively correlated with perceptions of access to care and perceptions of quality of care. Parents/caregivers who reported positive perceptions of SDM also reported feeling less negative about their child’s epilepsy. Barriers to successful SDM included ineffective communication from providers and not receiving adequate information and resources, particularly at the time of diagnosis. To improve SDM, parents/caregivers suggested having health care providers complete trainings to improve their communication skills, specifically being able to provide information in lay language.
• For young adults, SDM was positively correlated with perceptions of access to care, perceptions of quality of care, and perceptions of telehealth. Young adults who reported positive perceptions of SDM also reported feeling less negative about their epilepsy. Young adults’ suggestions for improving SDM included having the provider share more information about treatment options, medications, and sudden, unexpected death in epilepsy (SUDEP) during appointments. Young adults also emphasized wanting to be treated holistically.
Communication and Care Coordination:
• Parents/caregivers of CYE reported a lack of communication and sharing of information between PCPs and specialists. Parents/caregivers felt like time was wasted repeating information during appointments that was already in the medical records.
• Communication and care coordination between primary care providers (PCPs) and specialists are critical components of overall health care for children and youth with epilepsy (CYE). While specialists rated their communication with PCPs more favorably than PCPs perceived it, both PCPs and specialists acknowledged that care for CYE was not well coordinated. A frequently cited barrier to care coordination was disparate electronic health record (EHR) systems. Lack of time to engage in meaningful care coordination and limited compensation for time spent communicating with each other were also cited as care coordinating pain points.
Recommendations and Conclusion
The needs assessment utilized a mixed methods approach to collect a great deal of data from parents and caregivers of children and youth with epilepsy, young adults living with epilepsy, primary care and specialty care physicians and additional stakeholders. This information presents opportunities for the National Coordinating Center for Epilepsy and its national partners to take concrete steps to improve access to coordinated, comprehensive and quality care for children and youth with epilepsy. Based on a strategic planning session with its CYE Advisory Committee in August 2021, Center staff drafted a list of recommendations for both the Center and the field of pediatric epilepsy on the following domains: resource dissemination; education; partnerships; promoting health equity and culturally competent care; addressing system-level issues; and research. These recommendations will be refined into a strategic agenda for the Center and the field of pediatric epilepsy care to support professionals and families working to improve access to coordinated, comprehensive and quality care for children and youth with epilepsy.