Improving Health Care
Although effective treatments are available for some people with epilepsy, too many lack access to specialist care, insurance coverage, care coordination, and quality care and treatment. The IOM report recommends earlier identification of epilepsy and its comorbidities, greater focus on quality of care, stronger epilepsy networks including epilepsy centers, and enhanced professional education.
Access to Specialist Care and Insurance Coverage
Although many people with epilepsy may be treated effectively by primary care physicians, those with uncontrolled seizures require more specialized care provided by a neurologist or epilepsy specialist. People with uncontrolled seizures are at higher risk for adverse outcomes such as unemployment, driving limitations, loss of independence, and early mortality. A study of 13 states found that 34.9% of adults with active epilepsy and uncontrolled seizures in the previous 3 months did not see a neurologist or an epilepsy specialist in the previous 12 months, and about 20% of adults with epilepsy reported cost as a barrier to seeking care. On the basis of 2010 NHIS data, Healthy People 2020 now includes as a national goal to increase the proportion of people with epilepsy and uncontrolled seizures (defined as people who reported being told by a doctor or health provider that they have epilepsy and reported ≥1 seizures of any type in the previous year) who receive appropriate care (ie, see a neurologist or epilepsy specialist at least once per year) from a baseline of 57.7% (in 2010) to 63.5% (in 2020).The ACA prohibits insurance companies from refusing to sell or renew policies because of pre-existing conditions such as epilepsy. It also prohibits lifetime and annual dollar limits of health insurance coverage, thereby greatly reducing risks of medical bankruptcy for individuals. Improved insurance coverage could help improve access to specialist care. Because epilepsy is often a condition in children and young adults, it is noteworthy that at least 3.1 million young adults younger than 26 have obtained insurance coverage through their parents' health plans since 2010. Young adults have also accessed new coverage through Medicaid expansion and the ACA marketplaces.
Additionally, the provision of mental health coverage as part of essential health benefits made available through the ACA could also improve care for the large numbers of people with epilepsy and comorbid mental illness.
Care Coordination
The ACA authorizes demonstration projects to promote care coordination and team-based approaches to care delivery. In this spirit, the Health Resources and Services Administration's (HRSA's) Maternal and Child Health Bureau funds Project Access, which focuses on improving access to coordinated, comprehensive care for children and teens with epilepsy in medically underserved and rural areas. Consistent with IOM recommendations, these state and community-based demonstration projects, supported by a coordinating center at the American Academy of Pediatrics, promote patient/family–professional partnerships; link primary and specialty care, educational services, public health, and other community resources; focus on early detection and treatment; and address cultural and linguistic barriers to care.
Quality of Care
In its third round of funding in 2013, Project Access commits to quality measurement and the use of quality improvement methods (based on the Institute for Healthcare Improvement's Breakthrough Series Model) to implement and validate a well-functioning community-based system of services for children and teens with special health care needs. As part of this process, the coordinating center and the new 2013 grantees will assess outcomes such as family satisfaction with professionals, levels of continuous coordinated care in a family-centered medical home, and whether families have adequate insurance to pay for services.
Expanding the evidence base on quality and documenting possible cost savings could lead to new payment models. As part of the ACA, the Centers for Medicare & Medicaid Services (CMS) enhanced support for care coordination in numerous areas. Also, a recent change in Medicaid rules allows for reimbursement for preventive services by qualified professionals established by the state if the service is recommended by a physician or other licensed practitioner. States have the authority to allow licensed practitioners to deliver care in nonclinical settings, such as in homes or schools. The CMS Innovation Center, created by the ACA, serves as a new locus to foster innovative care-delivery models seeking to improve quality and reduce costs.
Epilepsy Networks
The University Centers for Excellence in Developmental Disabilities (UCEDDs), a national network funded by the HHS Administration for Community Living, supports individuals with intellectual and developmental disabilities, approximately 40% to 50% of whom have seizures. The Administration for Community Living funds 68 UCEDDs — at least one in every state and territory — to provide interdisciplinary training, community service, research, and information to increase independence, community integration, and inclusion of individuals with developmental and other disabilities. Each UCEDD develops its own priorities. Several, including UCEDDs in New York and Nebraska, have prioritized provision of clinical services for seizure control. Another, at the Westchester Institute for Human Development in New York, aims to reduce polypharmacy for epilepsy patients. Still others, such as the UCEDDs in Alaska, Washington, and Nevada, and at the University of Southern California, with HRSA funding have collaborated to improve outreach and access to care for individuals in rural areas.
Telemedicine and Telehealth to Improve Access
Some Project Access grantees and UCEDDs are using telemedicine and telehealth as a way to extend access to quality care and improve outcomes in rural and underserved areas. Telemedicine can overcome the physical distance between the care site and the health care expert to connect patients and their families, primary care practitioners, and epilepsy specialists in a patient-centered medical home, enhance real-time monitoring of test results and scans, and deliver health professional education. Early data from West Virginia, Michigan, and Nebraska indicate reduced wait times for neurology visits and less time and money spent by families traveling to specialist visits. In particular, the Nebraska UCEDD, as a Project Access grantee, was preliminarily able to reduce the wait time for telehealth consultation appointments for children; more formal evaluation of this program is needed. Also, the IOM report has spurred regional planning, including telecommunication technology options, in the 4-state region of Kansas, Nebraska, Iowa, and Missouri, which has almost 14 million people but only a few epileptologists.
Professional Education
Professional education can involve many types of providers, including primary care providers, school nurses, first responders, and law-enforcement personnel. These professionals can be trained to provide appropriate care and help link people with epilepsy to community supports. For example, the CDC-supported Epilepsy Foundation program, Managing Students with Seizures, trains school nurses about epilepsy and the needs of students with epilepsy. An evaluation of this program demonstrated increased confidence among nurses across numerous domains (eg, the ability to recognize partial seizures, knowing when to contact emergency help). Another CDC-supported educational program implemented by Epilepsy Foundation affiliates across the country teaches first responders to identify the various symptoms associated with seizures, provide appropriate first aid response on scene, and determine situations warranting further medical care.
Similarly, CDC-supported law-enforcement training programs aim to improve recognition of seizures and awareness of the unique needs of people with epilepsy who may otherwise be subjected to physical restraint and be taken into police custody. Other CDC-supported training programs in local communities focus on child day care staff, adult day care staff, and middle- and high-school students and teachers. Initial evaluation results from these educational programs are promising, but additional studies are needed.