Transcript Community building with children with pediatric multiple

Community building with children
with pediatric multiple sclerosis:
Finding ways to work together
Pamela Block, PhD, Maria Milazzo, RN, William
MacAllister, PhD, Lauren Krupp, MD (Stony Brook
University), Karen Koch, MPA (National Multiple
Sclerosis Society), Nina Slota, MS and
Access2Adventure
2006 American Public Health Association Meetings
November 8, 2006 12:30-2:00pm
Pediatric Multiple Sclerosis
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Multiple Sclerosis is an autoimmune disorder which
targets the central nervous system and most frequently
affects young adults, 20-40 years of age. However,
nearly 5% of patients are now diagnosed prior to age 18,
with an estimated 15,000 youngsters in the United
States.
Pediatric MS
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For children and teens impairments
caused by MS may include:
Speech
Vision
Cognition/Memory
Concentration
Fatigue
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Balance/Coordination
Numb or Tingling
Depression/Apathy
Heat Sensitivity
Physical Impairment
Usually symptoms come and go.
Children may have occasional
flare-ups which can be controlled
with medication and precautions
Children and Teens
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Children with pediatric MS represent
an under-recognized and underserved
population that falls between the
cracks of the health care system.
Pediatricians may not recognize or
know how to treat the MS, and
MS specialists may not have
experience working with children.
Children and Families
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When faced with a diagnosis of Pediatric MS,
children and families report a feeling of being
lost. There are few resources to turn to and
when speaking with their own support
network, they often hear “MS doesn’t happen
in kids”. They rarely have the opportunity to
meet another teen or family that has the
same experience
Dear Friend, I have MS:
A Booklet for Friends of Teens with
Multiple Sclerosis
“I won’t die from MS”
“There is no cure”
“You can’t catch MS from me”
“When I am in remission, I may have not
symptoms that are visible. I won’t look or
act sick but the MS is still there”
“I just want to be a normal teenager. I am
the same person I was before so don’t
treat me any differently.”
Pediatric Multiple Sclerosis
Project Stakeholders
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Diagnosed Children & Teens
Parents and other family members
Clinicians and Clinical Researchers
Non-Clinical Researcher/Community Liaison
Community Organizations
Teen Adventure Weekends
2004-2006
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To date over 40 children and teens
ages 11-19 have participated
All regions of the country were
represented, including Alaska and
Hawaii
Children and parents report high
satisfaction requesting that the
retreats be held more often and for
longer periods of time.
Retreats offer informal
opportunities to share information
and techniques for managing MS.
Clinicians
•The National Pediatric MS Center is a multidisciplinary clinical and
research program in the Stony Brook University Hospital and the Health
Sciences Center at Stony Brook University
•We are a professional team, consisting of a staff devoted to patient care
and dedicated to advancing knowledge of pediatric Multiple Sclerosis
(MS) through clinical research.
•The National Pediatric MS Center is committed to the care of children and
adolescents with MS, as well as those for whom the diagnosis of MS is
being considered.
Clinical services provided to children and
adolescents with MS and their families
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Comprehensive neurological assessment by a
pediatric neurologist and MS specialist;
Neuropsychological evaluation and psychological
assessment to evaluate the impact of MS on cognitive
and emotional functioning;
Individual psychological support for children,
adolescents, and family members;
In-depth assessment by a pediatric neurology nurse
practioner who specializes in MS;
Additional Services
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Case worker management services.
Ongoing care and treatment of MS(if local).
Consultation with your own physician.
Consultation with your school system.
Typically a patient will be seen over 1-2 days
in a detailed evaluation.
Non-Clinical Researchers
www.projectshakeitup.org
Pamela Block, PhD, Sarah Everhart Skeels, MPH,
James Rimmer, PhD and Christopher Keys (2002-2005)
Seminar Topics in
Independent Living
& Health Promotion
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Team Building
Self-Advocacy
Assistive Technology
Wheelchair maintenance
Van/driving adaptations
Communication with
Healthcare Professionals
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Alcohol, Substance use
Medications & Pain
Management
Nutrition
Skin Care
Sexuality & Relationships
Bladder & Bowel
Management
Recreational Activities
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Kayaking
Sailing
Fishing
Kite-Flying
Hand-cycling
Yoga
Tai Chi
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Strength & Conditioning (3
sessions)
Sledge Hockey
Team Building/Closure
Self Defense
Chi Kung Meditation
Scuba Diving (lecture
only)
Individual Capacity-Building
Quantitative Results
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Statistically significant improvement in selfefficacy scores for program participants
This improvement was maintained over time
Consistent for males and females, married
and non-married people, people with both MS
and SCI, and people of all races.
Individual Capacity-Building
Qualitative Results
Increased independence & goal attainment:
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Participation in competitive sports
Living independently
School
Employment
Increased nutrition and weight loss
Decreased dependence on prescription painkillers
Increased participation in activities of peer
leadership, mentoring & disability community
Organizational Capacity Building
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Move from Brown to Stony Brook
Decision to apply Project Shake-It-Up
methodology to Pediatric MS Research
Development of Community-Based
Intervention
Ongoing collaboration with CommunityBased Organizations (A2A and NMSS)
Access2Adventure
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access2adventure (a2a) is a non-profit
organization committed to improving the
quality of life for people with physical
disabilities.
They provide opportunities to participate
in sports, recreational activities and
adventure travel. a2a is based in Rhode
Island and serves the southern New England
community.
Goals of
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To facilitate physical and psychological
rehabilitation through sports, recreation, education
and social activities.
To increase public awareness of the capabilities
of persons with physical disabilities.
To develop and maintain strong relationships with
organizations serving persons with physical
disabilities.
To serve as a source of information about sports
and recreational opportunities in southern New
England.
Goals of
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, continued
To provide support for other chapters of DS/USA as
well as other community-based organizations with
similar purposes.
To promote the full utilization of existing programs
and facilities available to persons with disabilities.
To encourage people with physical disabilities to
be actively involved with access2adventure and
DS/USA, including planning events, making
suggestions for future programs, etc.
To teach good sportsmanship, encourage
competitive spirit, and foster independence
throughout program activities.
National Multiple Sclerosis Society
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Leader in developing programs and support
opportunities for children and teens with MS and
their families. Established the Young Persons
with MS Network in the early 1990s.
This support network offers a variety of program
options for children and teens with multiple
sclerosis and their families.
Collaborative effort of the National MS Society
and the MS Society of Canada (collaborative
partner since 2003).
National Multiple Sclerosis Society
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NMSS efforts for Pediatric MS are
international in scope
“Virtual Community” promoted through
telephone and on-line support networks
In-person opportunities also promoted
Publications for children and their parents
available in paper and online
Information and Referral
National Network of Pediatric MS
Centers of Excellence est. in 2006:
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Center for Pediatric-Onset Demyelinating Disease at the
Children’s Hospital of Alabama, University of Alabama at
Birmingham – Project director: Jayne Ness, MD, PhD;
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Jacobs Center for Pediatric MS, Jacobs Neurological Institute,
State University of New York at Buffalo – Project director:
Bianca Weinstock-Guttman, MD;
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Pediatric MS Clinic at Mayo Clinic Rochester, Minnesota – Coproject directors Nancy L. Kuntz, MD & Moses Rodriguez, MD;
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National Pediatric MS Center at Stony Brook University
Hospital, Long Island – Project director: Lauren Krupp, MD;
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Partners Pediatric MS Center at the Massachusetts General
Hospital for Children in Boston – Project director: Tanuja
Chitnis, MD;
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University of California, San Francisco Regional Pediatric MS
Center – Project director Emmanuelle Waubant, MD, PhD.
Centers of Excellence 5-year goals
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Establish a model for clinical care and treatment of
pediatric MS. Data collection for developing a
research model in the future;
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Allow families and patients to benefit from the
collective wisdom and resources of MS experts
across the country. Center directors and staff meet
periodically to share information, resources, and to
collaborate on strategies to provide families with the
best care and treatment programs for each child;
Centers of Excellence 5-year goals
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Centers are available and accessible to families
across the country. Families who are not in
geographic proximity can work through their local
chapter or the national office to determine the most
convenient center to visit;
There will be a uniform policy determined by the
steering committee regarding financial aid, in
particular for families who don’t live near a site and
may need a travel stipend.
As the network becomes more established, there will
be opportunities to engage other healthcare
professionals interested in pediatric MS.
Key and supporting messages
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Establish standards in pediatric MS care and offer
optimal medical and psychosocial support to
children and their families.
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Share critical resources and collecting
standardized data so that each family at every
center will get have access to the same information
and comprehensive care. Center directors will meet
in-person throughout the year to discuss
advancements, share best practices and collaborate
so that each family can benefit from the collective
knowledge of the entire network.
Key and supporting messages
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Provide optimal medical and psychosocial care
and support to children and their families; to educate
the medical community about pediatric MS; to
develop a nationwide collective and shared network of
knowledge; and to build a framework for research into
this patient population.
There are children with MS who are not receiving
timely diagnosis or proper treatment because MS is
typically considered an adult disease and pediatricians
do not always know to look for it.
Treat and serve as many people as possible across
the country. Families that live outside of a region that
hosts a center and need financial assistance to travel
to a center will be able to receive funding.
Challenges & Successes of
Collaboration
Differing Philosophies &
Language
 Disease/Impairment
 Medical
vs. Disability
Model
 Capacity-Building or Minority-Group
Model
 Independent Living Model
 Policy Model
 Charity Model
Multiple Goals & Strategies
Research
 Clinical Service Provision
 Building Community
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Empowerment
Leadership Training
Helping Sick Kids (traditional charity
model)
Search for Sponsorship
Foundations
 Federal Government
 Drug Companies
 Charity-Model Solicitation
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Evidence of Success
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Teens talking to each other at the retreat and
afterwards
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Cell Phones
Instant Messages
E-mail
MySpace
Parents talking to each other
Clinicians and researchers seek to ensure
that the information being exchanged is
accurate
Proposed Future Directions
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Regional camps (what models will
predominate?)
Teen/Young Adult Leadership Summit –
Include the voices of children and their
parents at the NMSS Pediatric MS Center of
Excellence Meetings.
Participation of children, young adults and
their families in setting research, clinical &
policy agendas for Pediatric MS.
For more information
www.access2adventure.net
www.nationalmssociety.org/Pediatric_and_Childhood.asp
www.nmss.org
www.pediatricmscenter.org
www.projectshakeitup.org