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 Improving Transitional Care for Children and Youth with Epilepsy

By Trisha Calabrese, MPH
Director, Division of Innovation, American Academy of Pediatrics

Although children and youth represent one of the fastest growing populations affected by epilepsy, many do not have access to pediatric neurologists and high-quality coordinated care provided in a medical home. In the fall 2013, the American Academy of Pediatrics (AAP) was proudly selected as the Coordinating Center for Children and Youth with Epilepsy under a Health Resources and Services Administration (HRSA) Maternal Child Health Bureau (MCHB) Cooperative Agreement. The overarching vision of the Center is to establish a multifaceted community-based system of care that ensures that children and youth with epilepsy (CYE) have access to the services required to achieve optimal health outcomes and an improved quality of life. The AAP is working with several state grantees to develop and implement a comprehensive evaluation methodology to support and monitor the various projects outcomes. A key component of this program is to ensure that grantees are also addressing transitional care for CYE. Grantees are creating epilepsy transition clinics, webinars, trainings for providers and families on beginning the transitional process, webinars, and more. For example, two of the grantees reported the following:

  • During the summer of 2014, the Epilepsy Foundation of Texas offered a transition program to 147 campers during a weeklong summer camp. The program consisted of a series of four sessions to introduce concepts of self-advocacy in relationship to personal health management and transitioning in relationship to assuming greater responsibility for health care routines.  Results of follow-up surveys from campers and parents reported improved medication adherence, an increase in self-advocacy skills and improved communication skills. Ninety-four percent of parents/caregivers agreed the transition programming was important information for their youth and reported observed improvements in personal appearance and hygiene, self-advocacy, knowledge about epilepsy, willingness to be around others, and remembering medication schedules.  Parents/caregivers also reported CYEs were happier, had more positive attitudes and exhibited a greater willingness to help with household chores.
  • The Maryland Team, through the Parents' Place of Maryland and the Office for Genetics and People with Special Health Care Needs, is working on a learning collaborative with primary care pediatricians. This initiative focuses on improving access to comprehensive, coordinated health care and other services for CYEs, including youth transition to adult care within the medical home framework. Through the use of monthly quality improvement conference calls, webinar-based didactic sessions and in-practice team meetings, the practices will work toward developing and implementing a transition policy, establishing criteria for transitioning youth, and developing a plan for transition of care. Two key components of the learning collaborative include the training and placement of parent partners within each pediatric practice and the partnership with Epilepsy Foundation Chesapeake Region (EFCR). Through the partnership with the EFCR, the Teen Epilepsy Empowerment Now (TEEN) group established and supports. This social and educational group for teens with epilepsy combines learning sessions on topics such as common seizure triggers, seizure action plans, and transitioning to adult care with fun activities like bowling, movies, and an annual outdoor retreat.

In addition, transitions was included as a key educational component of the AAP CYE Project ECHO curriculum. The AAP partnered with the University of New Mexico Project Extension for Community Healthcare Outcomes (ECHO) to expand existing capacity to provide best practice care for CYE in rural and underserved areas. Finally, with help from its advisory committee, the Center also recently updated content to the HealthyChildren.org website and integrated content on transitions:

For additional information, please contact Trisha Calabrese, MPH, director of innovation at tcalabrese@aap.org.