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

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

For children and teens impairments

caused by MS may include:Speech Balance/Coordination

Vision Numb or Tingling

Cognition/Memory Depression/Apathy

Concentration Heat Sensitivity

Fatigue Physical Impairment

Usually symptoms come and go. Children may have occasional

flare-ups which can be controlled

with medication and precautions

Children and Teens

Children with pediatric MS represent Children with pediatric MS represent an under-recognized and underserved an under-recognized and underserved population that falls between the population that falls between the cracks of the health care system.cracks of the health care system.

Pediatricians may not recognize or Pediatricians may not recognize or

know how to treat the MS, and know how to treat the MS, and

MS specialists may not have MS specialists may not have

experience working with children.experience working with children.

Children and Families

When faced with a diagnosis of Pediatric MS, When faced with a diagnosis of Pediatric MS, children and families report a feeling of being children and families report a feeling of being lost. There are few resources to turn to and lost. There are few resources to turn to and when speaking with their own support when speaking with their own support network, they often hear “MS doesn’t happen network, they often hear “MS doesn’t happen in kids”. They rarely have the opportunity to in kids”. They rarely have the opportunity to meet another teen or family that has the meet another teen or family that has the same experiencesame experience

Dear Friend, I have MS: A Booklet for Friends of Teens with

Multiple Sclerosis

““I won’t die from MS”I won’t die from MS”“There is no cure”

““You can’t catch MS from me”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 I just want to be a normal teenager. I am the same person I was before so don’t the same person I was before so don’t treat me any differently.”treat me any differently.”

Pediatric Multiple SclerosisProject Stakeholders

Diagnosed Children & Teens Parents and other family members Clinicians and Clinical Researchers Non-Clinical Researcher/Community Liaison Community Organizations

Teen Adventure Weekends 2004-2006

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 multidisciplinary clinical and research programresearch 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 caredevoted to patient care and dedicated to advancing knowledge of pediatric Multiple Sclerosis advancing knowledge of pediatric Multiple Sclerosis (MS) through clinical research(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

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

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.orgPamela Block, PhD, Sarah Everhart Skeels, MPH, James Rimmer, PhD and Christopher Keys (2002-2005)

Seminar Topics inIndependent Living & Health Promotion

Team Building Self-Advocacy Assistive Technology

Wheelchair maintenance

Van/driving adaptations Communication with

Healthcare Professionals

Alcohol, Substance use

Medications & Pain Management

Nutrition Skin Care Sexuality & Relationships Bladder & Bowel

Management

Recreational Activities

Kayaking Sailing Fishing Kite-Flying Hand-cycling Yoga Tai Chi

Strength & Conditioning (3 sessions)

Sledge Hockey Team Building/Closure Self Defense Chi Kung Meditation Scuba Diving (lecture

only)

Individual Capacity-BuildingQuantitative Results

Statistically significant improvement in self-efficacy 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-BuildingQualitative Results

Increased independence & goal attainment: Participation in competitive sports Living independently School Employment Increased nutrition and weight loss Decreased dependence on prescription pain-

killers Increased participation in activities of peer

leadership, mentoring & disability community

Organizational Capacity Building

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 Community-

Based Organizations (A2A and NMSS)

Access2Adventure

access2adventure (a2a) is a non-profit organization committed to improving the improving the quality of life for people with physical quality of life for people with physical disabilities. disabilities.

They provide opportunities to participateprovide 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

To facilitate physical and psychological facilitate physical and psychological rehabilitationrehabilitation through sports, recreation, education and social activities.

To increase public awareness of the capabilities increase public awareness of the capabilities of persons with physical disabilitiesof 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 , 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 encourage people with physical disabilities to be actively involvedbe actively involved with access2adventure and DS/USA, including planning events, making suggestions for future programs, etc.

To teach good sportsmanship, encourage teach good sportsmanship, encourage competitive spirit, and foster independencecompetitive spirit, and foster independence throughout program activities.

National Multiple Sclerosis Society

Leader in developing programs and support opportunities for children and teens with MS and their families. Established the Young Persons Young Persons with MS Networkwith 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

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

Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama, University of Alabama at University of Alabama at BirminghamBirmingham – Project director: Jayne Ness, MD, PhD;

Jacobs Center for Pediatric MS, Jacobs Neurological Institute, State University of New York at BuffaloState University of New York at Buffalo – Project director: Bianca Weinstock-Guttman, MD;

Pediatric MS Clinic at Mayo Clinic Rochester, MinnesotaMayo Clinic Rochester, Minnesota – Co-project directors Nancy L. Kuntz, MD & Moses Rodriguez, MD;

National Pediatric MS Center at Stony Brook University Stony Brook University Hospital, Long IslandHospital, Long Island – Project director: Lauren Krupp, MD;

Partners Pediatric MS Center at the Massachusetts General Massachusetts General Hospital for Children in BostonHospital for Children in Boston – Project director: Tanuja Chitnis, MD;

University of California, San FranciscoUniversity of California, San Francisco Regional Pediatric MS Center – Project director Emmanuelle Waubant, MD, PhD.

National Network of Pediatric MS Centers of Excellence est. in 2006:

Centers of Excellence 5-year goals

Establish a model for clinical care and treatmentEstablish a model for clinical care and treatment of pediatric MS. Data collection for developing a research model in the future;

Allow families and patients to benefit from the collective wisdom and resourcescollective wisdom and resources of MS experts across the country. Center directors and staff meet meet periodically to share periodically to share information, resources, and to collaborate on strategies to provide families with the best care and treatment programs for each child;

Centers are available and accessible to families available and accessible to families across the countryacross 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 policyuniform policy determined by the steering committee regarding financial aidregarding 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 engage other healthcare professionalsprofessionals interested in pediatric MS.

Centers of Excellence 5-year goals

Key and supporting messages

Establish standardsEstablish standards in pediatric MS care and offer optimal medical and psychosocial support to children and their families.

Share critical resourcesShare 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

Provide optimal medical and psychosocial careProvide optimal medical and psychosocial care and support to children and their families; to educate educate the medical communitythe 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 possibleTreat 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 vs. Disability Medical ModelCapacity-Building or Minority-Group

ModelIndependent Living ModelPolicy ModelCharity Model

Multiple Goals & Strategies

ResearchClinical Service ProvisionBuilding Community

Empowerment Leadership Training

Helping Sick Kids (traditional charity model)

Search for Sponsorship

FoundationsFederal GovernmentDrug CompaniesCharity-Model Solicitation

Evidence of Success

Teens talking to each other at the retreat and afterwards 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

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.netwww.nationalmssociety.org/Pediatric_and_Childhood.asp

www.nmss.org

www.pediatricmscenter.org

www.projectshakeitup.org