IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSY January 5, 2011 Cary Kreutzer Community...
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IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSY January 5, 2011 Cary Kreutzer Community Education Director USC UCEDD, Children’s Hospital Los Angeles [email protected] (323) 361-3830 Bill Stack Associate Director Epilepsy Foundation Northern California [email protected] (925) 224-7770
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Transcript of IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSY January 5, 2011 Cary Kreutzer Community...
IMPROVING ACCESS TO CARE FOR CHILDREN WITH EPILEPSYJanuary 5, 2011
Cary KreutzerCommunity Education Director
USC UCEDD, Children’s Hospital Los [email protected]
(323) 361-3830
Bill StackAssociate Director
Epilepsy Foundation Northern [email protected]
(925) 224-7770
Health Resources Services Administration (HRSA)
• Department of Health and Human Services• Maternal and Child Health Bureau• Four demonstration projects– USC UCEDD CHLA– Dartmouth– Washington State Health Department– Epilepsy Foundation – Florida, New York
• Project Access– September 2004 – March 2008 (Round 1)– September 2007 – August 2010
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Goals & Objectives
The overall goal of the project is to improve access to health care and related services for children and youth with epilepsy in rural and frontier communities in AK, CA, NV and WY.
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California State Team
Neva Hirschkorn, Executive Director, Epilepsy Foundation of Northern CaliforniaWilliam Stack, Associate Director, Epilepsy Foundation of Northern CaliforniaKathryn Smith, USC UCEDD Childrens Hospital Los AngelesCary Kreutzer, USC UCEDD Childrens Hospital Los Angeles
Epilepsy Foundation Northern CA
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EFNC Public Awareness Community Education Information Services
◦ Phone◦ Mail◦ Email
Support ◦ In-person support groups◦ Online forums◦ Epilepsy Connection◦ Individual Support
Film Loan Library and Educational Materials
Advocacy◦ Public Policy Institute◦ Kids Speak Up, Speak Out◦ Epilepsy California◦ Coalitions
Camp Coelho Family Retreat Social Excursions Events
◦ Conferences◦ Stroll◦ Gala
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What Is the Difference Between Epilepsy & Seizures?
• Epilepsy is a disorder characterized by recurring seizures (also known as “seizure disorder”)
• A seizure is a brief, temporary disturbance in the electrical activity of the brain
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A seizure is a symptom of epilepsy
Who Has Epilepsy?
• About 3 million Americans have epilepsy
• Roughly 200,000 new cases of seizures and epilepsy occur each year
• 50% of people with epilepsy develop seizures by the age of 25; however, anyone can get epilepsy at any time
• Now there are as many people with epilepsy who are 60 or older as children aged 10 or younger
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What Causes Epilepsy?
• In about 70% of people with epilepsy, the cause is not known
• In the remaining 30%, the most common causes are:– Head trauma
– Infection of brain tissue
– Brain tumor and stroke
– Heredity
– Lead poisoning
– Prenatal disturbance brain development9
Classifying Epilepsy and Seizures
• Classifying epilepsy involves more than just
seizure type
• Seizure types:
Partial Generalized
Simple Complex Absence Convulsive
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Consciousnessis maintained
Consciousnessis lost or impaired
Altered awareness Characterized bymuscle contractionswith or without lossof consciousness
Seizure Triggers
• Missed medication (#1 reason)
• Stress/anxiety
• Hormonal changes
• Dehydration
• Lack of sleep/extreme fatigue
• Photosensitivity
• Drug/alcohol use; drug interactions
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First Aid for Seizures
Stay calm and track time Do not restrain person, but help them avoid hazards
◦ Protect head, remove glasses, loosen tight neckwear◦ Move anything hard or sharp out of the way◦ Turn person on one side, position mouth to ground
Check for epilepsy or seizure disorder ID Understand that verbal instructions may not be obeyed Stay until person is fully aware and help reorient them Call ambulance if seizure lasts more than 5 minutes or if it is
unknown whether the person has had prior seizures
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Potentially Dangerous Responses to Seizure
DO NOTDO NOT
• Put anything in the person’s mouth
• Try to hold down or restrain the person
• Attempt to give oral anti-seizure medication
• Keep the person on their back, face up throughout convulsion
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When to Call 911 or Emergency Medical Services
A convulsive seizure occurs in a person not known to have seizures or lasts more than 5 minutes
A complex partial seizure lasts more than 5 minutes BEYOND its usual duration for the individual
Another seizure begins before the person regains consciousness
Also call if the person:◦ Is injured or pregnant◦ Has diabetes/other medical condition ◦ Recovers slowly◦ Does not resume normal breathing
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A Spectrum of Severity
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Uncomplicated epilepsy,Seizures controlled withmedication
Seizures not completely controlled by treatment;Epilepsy lowers standard of living due to social, emotional, and educational problems
Seizures refractory to treatment; Epilepsy is disablingdue to frequent seizures and other problems
•Sutter Neuroscience
•UC Davis
Stanford
•UCSF
•Pacific Epilepsy Program
Pediatric Epilepsy Centers
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Epilepsy Support Groups
– San Francisco@–Mountain View–Walnut Creek –Oakland@– Sacramento@–Vacaville–Monterey
– Santa Cruz *– San Luis Obispo *– Santa Barbara*– Shasta/Butte ^
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• @teen or parent specific•*outside of EFNC territory•^ No regular meeting time
• Helping Other People with Epilepsy– Community Education Program– Enables volunteers to tell their story
• Training– Train-the-trainer– Train-the-mentor– Distance vs. in person
• Multimedia presentation 18
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Epilepsy Foundation of America and Project Access
• Online Community Forums
• Monitored for accuracy
• Different groups for different needs
• Excellent for Rural populations
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Print MaterialsPrint MaterialsEpilepsy ResourcesEpilepsy Resources Parent Resource Guide (English, Spanish, Chinese, Farsi)
Preschool Guide
California Policy Brief
Medication Substitution (English and Spanish)
Seizure Description Tool (English, Spanish, Chinese, Farsi, Vietnamese)
Epilepsy Foundation Websites Epilepsy Foundation Websites
Epilepsy Foundation of Northern California http://www.epilepsynorcal.org Epilepsy National Foundation http://www.epilepsyfoundation.org/
Epilepsy Audios Epilepsy Audios
•Childhood Epilepsy Syndromes and their Neuro-Developmental Impact•Epilepsy, also called a seizure disorder, is a neurological (brain) disorder•Diagnosing and Understanding Childhood Epilepsy•What are the different types of epilepsy?
Training Strategy
• Conducted distance training targeting primary care providers and parents using:– teleconference
– Videoteleconference
– Podcast
– web-based
– Local media – newspaper, radio (including Piolin Show - Spanish)
– Libraries – The 9 most rural Northern CA Counties
– Multiple languages for products and publications
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Podcasts
• Introduction to Epilepsy
• Introduction to Epilepsy in Spanish
• Epilepsy and Women
• Controlling Epilepsy with Medicine
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Radio PSA
• Spanish-speaking Pediatrician contacted radio station, Piolin (Tweety Bird in the Morning) Show.
• Radio station asked that we send the script for Piolin to record for the show.
• Show aired with contact number for EFNC, calls received
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Social MediaNetworks
Know That You Are Not Alone !! 33
Wyoming Epilepsy Assoc.30 sec. PSA
Know That You Are Not Alone !! 34
Ordering Products
• Materials available via web pages
• Order form
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