Transforming Health Care for Children and Youth with Epilepsy

​​NATIONAL COORDINATING CENTER for EPILEPSY
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Transforming Health Care for Children and Youth with Epilepsy

The HRSA Epilepsy Program integrates public health, epilepsy affiliates, and providers to develop more seamless services across primary and specialty care, educational services, and other community resources.

​Transforming Health Care for CYE 2019-2023 Grantees:
    Michigan Department of Health and Human Services

    Michigan Department of Health and Human Services
    Project Title: Michigan's Project to Transform Health Care for Children and Youth with Epilepsy (CYE)
    Goals and Objectives: The goal of this project is to improve health outcomes among Michigan's children and youth with epilepsy (CYE), especially in those rural and underserved areas, through better support for health care transition, improved communication among providers, expanded access to telehealth/telemedicine services, and better training in shared decision-making.
    View Abstract

    Epilepsy Florida

    Epilepsy Florida
    Project Title: Project IMPACT- Improving Medical Pediatric Access to Care through Telemedicine
    Goals and Objectives: The purpose of the proposed project is to address the maldistribution of resources and services to children and youths with epilepsy (CYE) residing in rural and/or medically underserved areas. Pivotal to this proposal is a Telemedicine component which will increase access to specialized neurological care to CYE who may be medically complex/fragile and difficult to transport, live in remote areas or lack access to specialty care.


    Cleveland Clinic

    Cleveland Clinic
    Project Title: Integrating Mobile Provider Access for Telemedicine and Transition (IMPACTT)
    Goals and Objectives: 1) Telemedicine: face to face cameras allow patient to meet with providers virtually, use of MyChart, the Cleveland Clinic technology based record keeping and communication system available to all patients and physicians, and TytoCare which allows the providers to obtain physical examination findings to further advance the current capabilities of telehealth/telemedicine; 2) families as partners in decision making: the medical home model that underlies the care coordination clinic in Pediatric Epilepsy will be expanded to CYE in the pediatric sites; 3) transition: evaluate all CYE in the pediatric sites and pediatric epilepsy regarding transition activities, and provide technical assistance on implementation of the Got Transition Six Core Elements Framework. Including how to use tools embedded in EPIC for tracking,  recording, and billing to help youth transition from the pediatric to adult system of health care; and 4) consultation/co-management: virtual sessions involving primary care doctor and specialist will be provided using the Zoom platform and Project ECHO.
    View Abstract

    Children’s Hospital of Philadelphia

    Children's Hospital of Philadelphia
    Project Title: Promoting Improved Outcomes through Resource Integration for Children and Youth with Epilepsy (PRIORITY Epilepsy)
    Goals and Objectives: 1) Increase by 25 percent, access to care for CYE in the target population through telehealth strategies that provide direct care, including teleconsultation, tele-education, telemedicine, mobile health, etc.; 2) 90 percent of families in the target population report they are partners in shared-decision making in their child's care; 3) Increase by 75 percent the number of completed health care transition readiness assessments of youth (ages 14-22) with epilepsy in the target population; 4) increase by 40 percent, the number of participating primary care providers who report increased communication, collaboration, and co-management with specialty providers.
    View Abstract


    Children’s Mercy Hospital, Kansas City

    Children's Mercy Hospital, Kansas City
    Project Title: Reaching out for Epilepsy in Adolescents and Children through Telemedicine
    Goals and Objectives:

    1. Improving access to epileptologists via TM
    2. mproving the psychological care of CYE
    3. Improvingprovider comfort level in managing CYE
    4. IncreasingPCPs who report increased co-management of CYE
    5. Increasingthe number of CYE who complete healthcare transition readiness
    6. Improvingfamily engagement in the care of CYE
    View Abstract


    Boston Medical Center

    Boston Medical Center
    Project Title: Strategic Approaches to Transforming Health Care for Children and Youth with Epilepsy
    Goals and Objectives: The project will increase access to care for CYE using telehealth and overcome barriers to care by using telemedicine to deliver acute epilepsy care, outpatient epilepsy care and mental health for CYE. Seizure screening will be disseminated to new practices and a second medical center. The VPCMH will allow CYE, families, primary care providers, specialists and caregivers to collaborate in one virtual space to enhance shared-decision making and care coordination. Over the next four years, the number of CYE with VPCMHs will be doubled, reaching more non-English speaking CYE, and maximizing the tool's potential to connect CYE and providers. TRAQ assessments in youth 14-22 years will increase and the Transition Together mentoring program will develop buy-in from youth through group tele-education programs and one-on-one tele-mentorship. The proposed strategies will expand our reach to the approximately 12,996patients seen by the Network and the 10,000 served by the EFNE. We will expand the scope of our telemedicine program to include acute and outpatient epilepsy care, and teletherapy to provide needed mental health services for CYE. The VPCMH will expand the ability for CYE and their care providers to engage in shared decision making. CYE and their families will be more fully engaged through the Transition Together program. Lastly, we will better demonstrate the ability of the proposed strategies to transform healthcare for CYE by collecting and analyzing data longitudinally, thereby enhancing sustainability.
    View Abstract


    Ann & Robert H Lurie Children’s Hospital of Chicago

    Ann & Robert H Lurie Children's Hospital of Chicago
    Project Title: Collaborative Neurology Network for Enhanced Care through Telehealth for Children and Youth with Epilepsy Consortium (CONNECT for CYE)
    Goals and Objectives: 1)By 2023, increase by 25 percent, access to care for CYE in the target population through telehealth strategies that provide direct care, including teleconsultation, tele-education, telemedicine, mobile health etc.2)By 2023, 90 percent of families in the target population report they are partners in shared-decision making in their child's care.3)By 2023, increase by 75 percent the number of completed health care transition readiness assessments of youth (ages 14-22) with epilepsy in the target population.4)By 2023, increase by 40 percent, the number of participating primary care providers who report increased communication, collaboration, and co-management with specialty providers.
    View Abstract

Previous Grantees for the 2016-2019 cycle:​​​​​
    Boston Medical Center

    Boston Medical Center 
    Project Title: Delivering High Quality Care to Children and Youth with Epilepsy in Urban and Rural Settings 
    Goals/Objectives: The overall goal of this project is to: (1) improve access to quality integrated care/ intervention; (2) improve transitional care for CYE; (3) create and cultivate a CYE quality improvement learning collaborative 
    View abstract​​​​

    Children's Hospital of Philadelphia

    Children's Hospital of Philadelphia ​
    Project Title: Improving Access to Care and Transition Services for Children and Youth with Epilepsy in Eastern Pennsylvania (I-ACT for Epilepsy) 
    Goals/Objectives: The overall goal of this project is to 1) increase by 25% the number of CYE in the target population who receive care through a patient/family-centered medical home; 2) increase by 50% the number of CYE served by the clinical sites who have a youth transition plan in place; 3) increase by 25% the number of CYE in the target population who are from populations experiencing health disparities and/or residing in medically underserved and/or rural areas that have access to specialized epilepsy care; 4) increase by 25% the number of CYE in the target population reporting use of comprehensive and coordinated treatment and care plans; 5) increase by 25% the proportion of CYE served by the clinical sites receiving coordinated and comprehensive health care through telemedicine visits; 6) increase by 20% the number of CYE in the target population who are from populations experiencing health disparities and/or residing in medically underserved and/or rural areas receiving coordinated and comprehensive health care through telemedicine visits; 7) implement a pediatric to adult epilepsy transition infrastructure using the Got Transition Six Core Elements Framework across all clinical sites; and 8) increase by 50% the number of clinical sites with a plan in place to use telemedicine and mHealth to coordinate care for CYE from populations experiencing health disparities. 
    View abstract​​​​​​
    View case study

    Cleveland Clinic Foundation

    Cleveland Clinic Foundation

    Project Title: Integrating Mobile Provider Access for Telemedicine and Transition (IMPACTT)
    Goals/Objectives: The goals of the project are: 1) to provide care to CYE through a patient/family-centered medical home; 2) to provide transition planning for CYE; 3) to implement telemedicine with CYE and their families at CCF main and 9 clinical sites; 4) to establish a Learning Collaborative involving 9 pediatric primary care sites; and 5) to increase outreach and family engagement, using educational webinars. 
    View abstract​​​​​
    View case study

    Epilepsy Foundation of Texas

    Epilepsy Foundation of Texas
    Project Title: Emerging Strategies for Children and Youth with Epilepsy in Texas 
    Goals/Objectives: The goals of the program are: 1) Seven clinics will have increased telemedicine services to CYE, including those CYE experiencing health disparities, and/or living in medically underserved/rural areas; 2) Seven clinics will have a pediatric to adult transition infrastructure in place using Got Transition: Six Core Elements of Health Care Transition Model; 3) Improve care to 1000 CYE including 200 CYE experiencing health disparities/living in Medically Underserved Areas (MUA)/rural area
    View abstract​​​
    View case study

    Epilepsy Foundation of Western/Central Pennsylvania

    Epilepsy Foundation of Western/Central Pennsylvania​ 
    Project Title: Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy 
    Goals/Objectives: The goal of this initiative is to utilize quality improvement methods and measure outcomes to improve access to coordinated and comprehensive quality care for CYE, with an emphasis on populations experiencing health disparities and CYE residing in underserved and/or rural communities. The EFWCP will work to 1) Increase the capacity of medical home and pediatric practices to support CYE; 2) Establish primary care clinical sites to conduct telemedicine appointments; 3) Establish and implement epilepsy pediatric to adult transition models in clinical sites based on the Got Transition Six Core Elements Frame​work; 4) Establish and implement a program of education to increase awareness and knowledge of epilepsy and, 5) Implement quality improvement initiatives for the use of telehealth technologies to educate CYE and pediatric practitioners using telehealth/ehealth and mhealth. 
    View abstract​​​​​​​​
    View case study

    Michigan Department of Health and Human Services

    Michigan Department of Health and Human Services 
    Project Title: Michigan Strategic Approaches to Improving Access to Quality Health Care for Children and Youth with Epilepsy
    Goals/Objectives: The goals of this project are: 1) Michigan children and youth with epilepsy (CYE) will receive comprehensive and coordinated care within a patient-centered medical home; 2) Michigan youth with epilepsy will have a youth transition plan to enable seamless transition to adult care and services; 3) Michigan CYE will have access to appropriate specialized epilepsy care; and 4) Michigan families of CYE and youth with epilepsy will be fully engaged in shared decision-making at all levels of services.
    View abstract​​​​

    Michigan Medicine

    Michigan Medicine
    Project Title: Access and Quality Care in Pediatric Epilepsy
    Goals/Objectives: This proposed project will utilize three key strategies to improve access to quality health care for children and youth with epilepsy (CYE): 1) establishment of a technology-based learning collaborative for epilepsy education of CYE, their families and providers; 2) development of a transition program for adolescents with epilepsy from pediatric to adult specialty care; 3) expansion of a robust medical home-based telemedicine system to incorporate an innovative tiered telemedicine system of care that links community neurologists in rural and medically underserved areas with the Level 4 Pediatric Epilepsy Center at the University of Michigan. 
    View abstract​​​​
    View case study​​​​

Previous Grantees for the 2013-2016 cycle: 
    Epilepsy Foundation of Texas

    Epilepsy Foundation of Texas
    Project Title: Emerging Strategies for Children and Youth with Epilepsy in Texas
    Goals/Objectives: To improve access to medical homes, availability of specialty care, and training in transitional skills for children and youths with epilepsy. The proposed project will improve access to coordinated care through establishment of a culturally competent Patient Centered Medical Home (PCMH) by: 1) Providing access to comprehensive coordinated healthcare; 2) Increasing levels of health literacy; and 3) Improving transitional skills for CYE into adulthood. Objectives will 1) Utilize advanced technologies such as telemedicine to connect the PCMH to epilepsy specialists; 2) Incorporate learning activities into youth programming to increase transitional skills; and 3) Create and deliver culturally appropriate health literacy.
    View abstract​​

    Michigan Department of Community Health

    Michigan Department of Community Health 
    Project Title: Michigan Strategies to Improve Access to Services for Children and Youths with Epilepsy
    Goals/Objectives: The purpose of the project is to: 1) Increase access to family-centered, culturally-competent medical homes, using telemedicine technologies for Children and Youth with Epilepsy (CYE); 2) Use telemedicine to increase and improve partnerships, relationships, and communication between families of CYE and providers; 3) Increase the number of and process for transition planning and care appointments for adolescents and youth from pediatric specialty providers to adult providers; 4) Develop partnership with the Region 4 Genetics Collaborative to link genetic service providers and genetic counselors with families of children and youth with epilepsy; and 5) Increase public family-provider awareness of epilepsy through the dissemination of existing guidelines and practice parameters for CYE related to early identification and treatment of epilepsy.
    View abstract

    Epilepsy Foundation of Western/Central Pennsylvania

    Epilepsy Foundation of Western/Central Pennsylvania 
    Project Title: State & Regional Approaches to Improving Access to Services for Children/Youth with Epilepsy
    Goals/Objectives: The purpose of the proposed project is to establish a state and regional approach to improving access to healthcare and community services for children/youth with epilepsy by implementing a plan to accomplish the following: 1) Enhance the coordination of care between primary and specialty care through telemedicine and other health education technology systems; 2) Increase the capacity of medical home practices to support children and youth with epilepsy and their families; 3) Increase public awareness of epilepsy/seizure disorders 4) Enhance the knowledge and skills of families and youth in the area of transition to adult life and healthcare; and 5) Ensure that residents in rural communities are provided education that is culturally appropriate.
    View abstract​​​​​

    The Parents Place of Maryland

    The Parents Place of Maryland
    Project Title: Maryland Access Improvement Project for CYSHCN with Epilepsy
    Goals/Objectives: The overarching goal of this project is to improve access to comprehensive, coordinated health care and related services for Maryland CYSHCN-E/SD and to increase the number of CYSHCN-E/SD who have: a medical home; an individual care plan accessible to all providers; a plan to begin taking responsibility for their own health care; and a plan for transition to adult health care. Goals include: 1) Improving the infrastructure needed to assure that services for CYSHCN-E/SD are community-based and easy to use and that adolescents begin to take responsibility for their own health care needs; 2) Increasing the number of CYSHCN-E/SD in rural and medically underserved areas who have access to medical homes that coordinate care with other providers and encourage youth to take increased responsibility for their health care needs; and 3) Supporting the development of family/professional partnerships among CYSHCN-E/SD and the system of care.
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    New Hampshire Department of Health and Human Services

    New Hampshire Department of Health and Human Services
    Project Title: FACETS of NH
    Goals/Objectives: 1) Increase access to appropriate care and improve capacity of neurology-primary care providers to effectively co-manage children and youth with epilepsy residing in medically underserved/rural areas of NH; 2) Develop standards and recommendations for a Transition Clinic for Adolescents as they progress from Pediatric Neurology to Adult Neurology, to be piloted at Dartmouth-Hitchcock; 3) Increase community capacity to understand epilepsy, reduce stigma, and enhance partnerships via improved and accessible education awareness initiatives for families, primary care providers, and community providers regarding current standards of care, diagnostic, and treatment concerns.
    View abstract

    Epilepsy Foundation of New Jersey

    Epilepsy Foundation of New Jersey
    Project Title: Regional Access Collaborative: Improving Diagnosis, Treatment, and Services for Children and Youths with Epilepsy
    Goals/Objectives: Major Goal #1: To increase awareness of epilepsy and improve access to coordinated and comprehensive care for children and youths with epilepsy that promote early recognition, timely diagnosis, and access to appropriate care, particularly to underserved geographical areas and groups. 1) Develop Improving Accurate Diagnosis & Treatment of Epilepsy: A Training for Pediatric Practice Teams; 2) Conduct 21 trainings at large pediatric practices and Federally Qualified Health Centers (FQHCs) in Connecticut, New Jersey, and New York. 3) Present training at state Title V meeting and at state school nurse and Department of Health Conferences. Major Goal #2:  Enhance the knowledge of children and youths with epilepsy and their families about epilepsy, treatment, health, and local community services. 1) Organize parent focus groups, which will allow parents to give valuable feedback about what services they are receiving and what services are needed. 2) Connect children and youth with epilepsy and their families to the services and local resources including the Epilepsy Foundation and Family Voices. Online and print materials will be made available. 
    View abstract

    The Cleveland Clinic Foundation

    The Cleveland Clinic Foundation
    Project Title: Coordination Access Resources Education 4 Epilepsy (Project CARE 4 Epilepsy)
    Goals/Objectives: To improve care coordination; provide patient and family education; access early mental health screening; and increase family and patient engagement. Objectives 1) Create a Care Coordination Clinic that will improve effectiveness and efficiency for youth with epilepsy and their families. 2) Create a Transition Clinic using the six core elements of health care transition identified by the National Healthcare Transition center. 3) Increase knowledge about epilepsy and epilepsy care for families and youth with epilepsy. 4) Provide a bullying prevention program for CYE. 5) Increase social support for youth with epilepsy and their families. 6) Disseminate the Mental Health and Epilepsy toolkit to professionals in epilepsy care and family members of Children with Epilepsy (CYE).
    View abstract

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U23MC26252, Awareness and Access to Care for Children and Youth with Epilepsy/ cooperative agreement. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

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