2012 Grantee Meeting: Grantee Highlights
March 1 - 2, 2012, Arlington, VA
Our COPE psycho education series focused on increasing awareness about mental health issues in epilepsy for parents/teens. Our sessions were very well received by participants. We had 12 classes in year 1. Some of the positive feedback was that they enjoyed the music therapy part to class and the much needed support group like setting we offered.
Our 2012 plan was strengthened by our ability to market these classes to a broader community in addition for a longer period of time.
- 1068 patients ages 8-21 seen at the Cleveland Clinic with ICD 9 code for epilepsy in the last 3 years
- 45 individual MD's (neurologist, epileptologist, psychiatrist and psychologist OUTSIDE of the Cleveland Clinic)
- Cleveland Clinic Office of Diversity promoted it to all of their Hispanic contacts via list serves and newsletter
- 72 community agencies
- Hispanic newsletter at our inner city hospital
- Cleveland Metropolitan School District (CMSD) eblast
- Cleveland Clinic epilepsy website
- Epilepsy Association website and Winter Walk
- Flyers in epilepsy outpatient clinic and inpatient unit
- Univision Spanish TV channel did a 30 minute interview to promote our program; it included one of our epileptologist, one of our Spanish speaking families and Dr. Falcone.
Summer classes were most successful and we are implementing Saturday classes to increase participation.
Healthy Relationship Skills/Bullying Prevention
First year of the grant Cleveland Metropolitan School District had agreed to partner with us but after new administration and numerous meetings were held they did not move forward with the project.
The purpose of this project is to improve healthy relationships. We are targeting the students and the gatekeepers (adults in contact with the students at the schools). Students and patients with epilepsy will complete 3, 30 – 40 minute computer based interventions plus a 3 month follow-up survey that will focus on healthy relationship skills to prevent peer violence. Pro-Change, a Rhode Island based company, will target their Teen Choices program to include some modifications to address children with epilepsy and special health care needs. The program focuses on 5 healthy relationship skills:
1) Trying to understand and respect other peers feelings and needs
2) Using non-violent ways to deal with problems and disagreements
3) Respecting peers
4) Communicating each other needs and feelings respectfully
5) Making appropriate decisions in social interaction
We will also focus on recognizing and accepting differences. The goal is to keep the students safe, if they are already involved in unhealthy relationships (bullying victim or perpetrator)
1) Getting help or talking to someone
2) Safety planning
3) Making correct decisions about peer interaction
For the Gatekeeper training we will use the Kognito interactive program for middle and high school personnel and educators. At-Risk for High School Educators is a one-hour online, interactive gatekeeper training simulation designed to prepare high school teachers and staff to identify, approach, and refer students exhibiting signs of psychological distress including depression, anxiety, and thoughts of suicide. The At Risk module is a 60 minute computer base program using simulated conversations with an emotionally responsive avatar.
Fall of 2011 we contacted a suburban public school who is willing to offer the program to their students as an after school program. We are in the middle of implementing it at this time. Over the next few months we will contact 11 other suburban public high schools who have greater than 1500 students (6 are West side schools/5 are East side schools) and offer to make the computerized 3 session 30-40 minute each education series part of their curriculum.
Pediatric Triage Mental Health Clinic has coverage from both Dr. Falcone and Dr. Austerman every Friday to promote the idea of medical homes to include mental health services and psycho- education to residents, fellows and pediatricians.
Launched our patient mental health screening (Knowledge project© database in pediatric epilepsy clinic- 2200 patients in the first year of the grant completed the screening. Currently we are writing two manuscripts on "Quality of Life and Epilepsy", "The impact of ADHD in youth with epilepsy" from this data. We are also planning to expand our mental health screening to all the inpatients at the Pediatric Epilepsy Monitoring Unit; we will be screening using the following questionnaires;
Some basic questions about the severity of epilepsy and impairment secondary to epilepsy
Impact of Childhood Neurologic Disability Scale
Liverpool seizure severity Scale
PHQ-2 if you answer yes to these 2 questions it opens the other 2 depression screening
Columbia Suicidality Severity Rating Scale
· National Association for Community Health Centers
· Primary Care Associations
· Epilepsy Foundation of North Carolina
· Epilepsy Foundation of Louisiana
· Epilepsy Foundation of Alabama
· Epilepsy Foundation of Houston/Dallas/ Ft. Worth
· Epilepsy Foundation of South/ Central Texas
We have recently completed the pilot test of the care coordination training curriculum which focuses on children and youth with epilepsy. The training curriculum is being revised and will be available in early March. The trainings will be targeting staff from FQHCs in five states: Alabama, Georgia, Louisiana, North Carolina and Texas.
Our pilot training proved that among care coordinators who saw children in medically underserved areas, many felt they did not know enough about epilepsy. Because of the high rate of co-morbidities among children and youth with epilepsy and delayed treatment time by specialists in medically underserved areas, this information has positive care outcomes.
In the spring and summer of 2012 we will be conducting trainings in several states beginning with Texas. Our intent is to coordinate our training with other statewide events and reach physician and other staff who may not fully understand epilepsy. We are also exploring ways to reach a broader audience through web trainings or in self taught modules.
Local affiliates in these five states have been provided $10,000 to implement programs which reach medically underserved groups using these principles of care coordination.
Epilepsy Foundation of Western/Central Pennsylvania
Project Summary – Partnerships and Collaborative Activities
The EFWCP "Innovative Strategies and Replicating Promising Practices Program" Health Resources and Services Administration grant project consists of a number of goals where partnering and collaboration with diverse community/medical stakeholders are essential elements. The goals and groups include:
· Develop and implement primary care education in response to provider identified needs in the areas of epilepsy diagnosis, treatment and related issues.
o EFWCP worked with the PA Medical Home Initiative to conduct an assessment of the epilepsy related educational needs of primary care pediatrics. The areas of concern identified through this assessment were then addressed at a statewide EPIC Medical Home Conference on Epilepsy, held November 4, 2011 in Harrisburg, PA. Over 150 people attended this all day conference. Audience members included primary care pediatricians and nurses from across the state, practice managers, community nurses, families and professionals who help to coordinate care for children with special needs.
o EFWCP is now working with partners from the Children's Hospital of Pittsburgh of UPMC to plan and launch a series of on-line, lunch time webinars and learning opportunities that will address additional educational needs identified by pediatricians. Use of over the counter medications and anti-seizure drugs, updates on the use of surgery and vagal nerve stimulation in the control of epilepsy and school health issues related to seizures are among the topics that will be address through on-going webinars.
· Increase community knowledge of the full spectrum of epilepsy intervention and the social and medical issues associated with seizure disorders
o EFWCP has established an agency wide goal of increased outreach and service to the African-American community in the Greater Pittsburgh area. In order to achieve this goal, the following organizations and groups will be contacted and partnerships established:
§ Center for Minority Health, Graduate School of Public Health, University of Pittsburgh, PA Department of Health, State Improvement Plan community partnerships (Northside, Mon Valley), Bynums Marketing and Communications, Inc., Department of Behavioral and Community Health Sciences, Graduate School of Public Health, University of Pittsburgh, area churches and other faith-based organizations
· Integrate a systems approach to primary care based mental health screening and treatment referral.
o Collaborate with local primary care practices (Pediatric Alliance, P.C.) and a local mental health provider (Wesley Spectrum Services) to pilot practice based mental health screening and treatment for children/youth with epilepsy
· Partner with a neurologist from Children's Hospital of Pittsburgh to pilot the assessment and analysis of the cognitive effects of seizures and antiepileptic medications
· Establish proactive collaborative guidelines between primary care providers, specialists in neurology/epilepsy, families, youth and the EFWCP to improve communication among providers and to identify roles and responsibilities for co-management of care.
o The co-management goal is at the heart of our grant activities. EFWCP is partnering with the department of neurology at Children's Hospital of Pittsburgh (20 neurologists and epileptologists and hospital staff), the Pediatric Alliance, P.C. (two of ten medical home primary care practices in the Greater Pittsburgh area), parents, young adults, and a local mental health provider in a learning collaborative approach to design, utilize, analyze and finalize communication and information sharing protocol between primary care and specialty care providers (Plan, Do, Act, Study). Working relationships with other community agencies/organizations have been previously established, are available and are willing to partner in this process as needed (Achieva – local former Association for Retarded Citizens, United Cerebral Palsy Association, PEAL Center (Parent Education and Advocacy Leadership Center – state Parent Training and Information center), Wesley Spectrum Services and Allegheny Children's Initiative (children's and school mental health services), ABOARD – Advisory Board on Autism and Related Disorders, and the state Office of Vocational Rehabilitation).
Epilepsy Foundation of Florida
Medical Home Survey
Our goal is to show that "medical homeness" improves from both the physicians' and the families' perspectives when children and youth with epilepsy have Transition Plans, Seizure Action Plans and Care Plans.
Each of Florida's regional team leaders recruited a minimum of one PCP and one pediatric neurologist who have agreed to participate in this initiative. The practices have identified 10-15 patients with epilepsy that they mutually treat. The medical practices are asked to complete the Medical Home Survey at the beginning of the project and each of the participating families is asked to complete the Medical Home Family Survey. Between the 3rd and 15th months of the study, monthly one-hour conference calls will be conducted with a focus of discussion on how the Seizure Action Plans and Care Plans have impacted their medical management.
We hope to increase the scores on the Medical Home Practice Survey and the Medical Home Family Survey in 7 primary care practices by 25% by implementing a Seizure Action Plan and Care Plan for a subset of children and youth with epilepsy.
We hope to increase the scores on the Transition Section of the Medical Home Practice Survey and the Medical Home Family Survey in at least two practices by 25% by implementing a Transition Protocol based on the American Academy of Pediatrics' article in the July 2011 issue of Pediatrics.
Miami Children's Hospital; Dan Marino Center and Cleveland Clinic Weston; Pediatric Neurologists of Palm Beach; University of Florida, Shands Children's Hospital, Gainesville; Shands, Nemours Children's Hospital, Mayo Clinic Jacksonville; Florida Department of Health Children' Medical Services; Florida Department of Children & Families; Florida Association of School Nurses; Florida Association for Early Childhood Education; Florida Coordinated School Health Consortium; Florida School Resource Officers Association; Florida Public Health Association; Florida Society of Neurologists; Florida Dental Hygienists Association; Family Café; Brain Injury Association; FL Dept. of Transportation; FL Safe Kids; Tuberous Sclerosis Association; Dravet Syndrome Association.
Kansas Telehealth Services for Pediatric Epilepsy
Project Summary & Update
This project is a collaboration among health technology leaders at the University of Kansas Center for Telemedicine and Telehealth, community liaisons at Kansas' Area Health Education Centers, public health specialists at Wichita State University, national and local pediatric neurology leaders, and consumer partners through Families Together. The objectives include: 1) to use technology to increase training opportunities across health professionals and paraprofessionals supporting children with epilepsy in rural communities; 2) to utilize an existing telehealth infrastructure to develop education and training for school personnel related to the educational, psychological, social, and emotional needs of students with epilepsy; and 3) to expand access to family-centered pediatric epilepsy evaluation, treatment, transition, and adjunct services over telemedicine through a robust state telehealth network.
The project has successfully implemented clinical services over telemedicine for pediatric epilepsy, drawing on diverse specialists (e.g., pediatric neurologist, epileptologist, mental health specialists, pediatric educator) to serve patients and families at a range of rural clinic and school-based settings. New and follow-up patients are seen through the half-day per month clinic. Additionally, the project is piloting mobile devices at a rural primary care clinic to deliver secure telemedicine services and to promote coordinated care.
The project continues to expand distance education services with ongoing webinars to health care professionals through the AHECs, including an upcoming series on transition/AYA topics. The project recently expanded technology supported seizure trainings for Kansas' EMS providers and hospital staff. Telehealth presentations to over 600 school professionals have been provided by the pediatric educator.
In Year 3, the project focuses on disseminating lessons learned with telehealth. The team is finalizing a practical website, www.teleneuro.org, to provide telehealth related tutorials and resources for health professionals, families, and community members. A poster about the development of this site will be shared at the upcoming American Telemedicine Association meeting.
Michigan Department of Community Health/ Children's Special Health Care Services
"Awareness and Access to Care for Children and Youth with Epilepsy: The Pediatric Epilepsy Telemedicine Initiative"
· Epilepsy Foundation of Michigan
· Family Center for Children and Youth with Special Health Care Needs
· Department of Pediatrics and Communicable Disease, University of Michigan Health System
· Medical Center Information Technology unit, University of Michigan Health System
· Dickinson Pediatric Clinic
· DeVos Children's Hospital, Spectrum Health System
· Alcona Health Center
· Michigan Primary Care Association
Michigan currently has two pediatric epilepsy telemedicine clinics operating successfully with each site seeing 3-5 children and youth monthly thus far for both new and return clinic visits. The originating sites (patient sites) are rural primary care clinics. Each connects to a major children's hospital neurology department where an epileptologist connects with a primary care provider and the child/youth/family for a telemedicine clinic appointment via two-way videoconferencing. The primary care provider provides the medical home for the child and care coordination is carried out as an integral component of the medical home. The Family Center for Children and Youth with Special Health Care Needs in Michigan is providing the parent partners with training in advocacy and leadership. We anticipate opening 4 additional primary care sites in year 2 of the grant. We are building a statewide interoperable network for telemedicine to serve our children and youth with special health care needs beginning with children and youth with epilepsy.
The Montana Pediatric Epilepsy Telehealth (PET) Project
- To enhance the ability to offer pediatric neurological care and support to children with epilepsy in rural and frontier communities throughout MT
- Increase rural access to pediatric care and education through the use of telemedicine
- Provide a cost effective approach to improves access to clinical services and education for children and their families, by developing a regional partnership through the Montana Telehealth Alliance (MTA) and Seattle Children's Hospital (SCH)
- Healthcare providers and pediatric patients with epilepsy in MT will have increased and timely access to pediatric neurology
- Healthcare providers will be offered access to knowledge, skills and support in the care of all pediatric patients with epilepsy through a partnership with SCH using Telehealth technology
- All MT pediatric patients with epilepsy and their families will have increased and more timely access to quality health information
· Health Resources and Services Administration
· St. Vincent Children's Healthcare
· Seattle Children's Hospital
· Community Medical Center
· Great Falls Clinic
· Montana DPHHS
· Children's Special Health Services
· School District 2
· Parents Let's Unite for Kids (PLUK)
· Early Childhood Intervention (ECI)
· St. James Healthcare
· Holy Rosary Healthcare
· Epilepsy Foundation
Project to Date
· Deployed telemedicine units in Seattle Children's Hospital-Dept of Neurology, Community Medical Center in Missoula, Children's Specialty Care Clinic in Billings, St. James Healthcare in Butte, and Holy Rosary Healthcare in Miles City. Awaiting deployment of equipment to Great Falls Clinic.
· Pediatric Neurologists (Dr. Kollros from Seattle Children's and Dr. Bakdash from St. Vincent Children's Healthcare) have both begun to see patients in follow up via telemedicine.
· Satisfaction and efficacy data is being collected on all consenting parties using telemedicine (IRB reviewed and approved).
· Produced the "Pediatric Epilepsy Education for Healthcare Providers" series which offered CME for those attending in person or via videoconferencing. Four events offered in 2011 and four will be offered in 2012.
· Offered a community education series, "Epilepsy and Kids" for children and /or their parents to build a community support group and identify resources they were unaware of. Four events were offered last year and also for 2012.
· A "Montana Medical Home Portal" is being developed to address healthcare resources for special needs children. The Portal will be accessible to providers, patients and families and will list resource agencies, etc and provide comprehensive, current information regarding medical conditions, etc.
Epilepsy Project Access in Nebraska
Our rural telehealth clinics for epilepsy have been held for 9 months. In January we began to see an increase in requests for clinic appointments coming from a variety of new sources. We are now increasing our outreach to include at least 5-10 new sites in the coming months, and have added Facebook, Twitter and a blog to our outreach efforts.
School nurse training developed (fall 2011) in conjunction with Nebraska DHHS has trained close to 150 school nurses and aides and an additional session is scheduled at annual Nebraska State Nurses Convention in June 2012.
· Munroe-Meyers Institute
· Epilepsy Foundation North Central Illinois, Iowa and Nebraska
· Nebraska Department of Health and Human Services
o Division of Public Health
§ School Nursing
§ EMS – Trauma Training
o Title V: Medicaid
§ School social workers
· PTI Nebraska (Family Voices, Family to Family Health Information Center)
· Good Samaritan Hospital Telehealth
· Kearney Clinic, Kearney, NE (a medical home)
· O'Hana Kids' News (on-line newsletter for rural Nebraska families with special kids)
· Nebraska Educational Service Units (Nebraska Department of Education)
NH Department of Health and Human Services, Special Medical Services
FACETS of Epilepsy Care in New Hampshire
Who are the gems (partners) in FACETS?
· NH DHHS, Special Medical Services (Title V CSHCN Agency): Grantee, Program Manager
· NH Family Voices: employs Project Coordinator & Youth Coordinator, and provides mentorship for consumer engagement
· Child Health Services: clinical site improvement team, employs care coordinator & forum coordinator
· Dartmouth Hitchcock Pediatric Neurology: Dr. Richard Morse
· Epilepsy Foundation of MA, RI, NH, ME
Areas of focus:
Primary pediatric care: neurology care co management
Educational forums: parent – provider education forums by pediatric neurologist
How we shine:
Promoting Ease of Use:
Our clinical site, Child Health Services (CHS), provides pediatric primary care for a culturally diverse, very low-income population, who are at risk for loss to follow up with, and access to, specialty care. Our improvement work has been focused on improving the capacity of CHS to identify and track the target population, to most efficiently use their comprehensive network of family support & care coordination efforts, and to improve communication between primary care and the specialty care providers serving their patients.
Promoting parent professional partnerships:
All grant efforts are infused with engaged consumers, from clinical site improvement efforts (parent partner and youth coordinator presence), to training opportunities (both audience and trainers are a blend of family members / consumers and professionals).
Promoting Medical Home:
Information about Medical Home is included in all trainings. Materials shared to support communication and co-management between primary and sp