Community building with children with pediatric multiple sclerosis: Finding ways to work together

1. 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

2. 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.

3. 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

4. Children and Teens • 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.

5. Children and Families • 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

6. 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.”

7. Pediatric Multiple SclerosisProject Stakeholders • Diagnosed Children & Teens • Parents and other family members • Clinicians and Clinical Researchers • Non-Clinical Researcher/Community Liaison • Community Organizations

8. 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.

12. 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.

13. 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; Clinical services provided to children and adolescents with MS and their families

14. 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.

15. Non-Clinical Researchers www.projectshakeitup.org Pamela Block, PhD, Sarah Everhart Skeels, MPH, James Rimmer, PhD andChristopher Keys (2002-2005)

16. 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 Seminar Topics inIndependent Living & Health Promotion

17. 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) Recreational Activities

18. 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.

19. 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

20. Organizational Capacity Building

21. 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)

22. Access2Adventure • 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.

23. Goals of • 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.

24. 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 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.

25. National Multiple Sclerosis Society • Leader in developing programs and support opportunities for children and teens with MS and their families. Established the Young Persons with MS Networkin 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).

26. 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

27. National Network of Pediatric MS Centers of Excellence est. in 2006: • Center for Pediatric-Onset Demyelinating Disease at the Children’s Hospital of Alabama, University of Alabama at Birmingham – Project director: Jayne Ness, MD, PhD; • Jacobs Center for Pediatric MS, Jacobs Neurological Institute, State University of New York at Buffalo – Project director: Bianca Weinstock-Guttman, MD; • Pediatric MS Clinic at Mayo Clinic Rochester, Minnesota – Co-project directors Nancy L. Kuntz, MD & Moses Rodriguez, MD; • National Pediatric MS Center at Stony Brook University Hospital, Long Island – Project director: Lauren Krupp, MD; • Partners Pediatric MS Center at the Massachusetts General Hospital for Children in Boston – Project director: Tanuja Chitnis, MD; • University of California, San Francisco Regional Pediatric MS Center – Project director Emmanuelle Waubant, MD, PhD.

28. Centers of Excellence 5-year goals • Establish 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 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;

29. Centers of Excellence 5-year goals • 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.

30. Key and supporting messages • Establish standards in pediatric MS care and offer optimal medical and psychosocial support to children and their families. • 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.

31. Key and supporting messages • 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.

32. Challenges & Successes of Collaboration

33. Differing Philosophies & Language • Disease/Impairment vs. Disability • Medical Model • Capacity-Building or Minority-Group Model • Independent Living Model • Policy Model • Charity Model

34. Multiple Goals & Strategies • Research • Clinical Service Provision • Building Community • Empowerment • Leadership Training • Helping Sick Kids (traditional charity model)

35. Search for Sponsorship • Foundations • Federal Government • Drug Companies • Charity-Model Solicitation

36. 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

37. 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.

38. For more information www.access2adventure.net www.nationalmssociety.org/Pediatric_and_Childhood.asp www.nmss.org www.pediatricmscenter.org www.projectshakeitup.org