Spina Bifida and transition to adult life

1. Spina Bifida and transition to adult life Sue Mukherjee MD, Chicago Children’s Memorial Hospital and Rehabilitation Institute of Chicago

2. Transition • The process of learning and mastering skills needed for successful adult life • Medical and other Decision making • Self care and hygiene • Socializing, maintaining relationships • Work skills, finding a meaningful activity • Occurs over many years, esp. high school • May include transfer of care to adult providers, with adult “style” medical care

3. Definition of Transition • Transition is defined as: • “the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems.” • Healthcare Transition ≠ Transfer of Care • Transition is aProcess,not an Event • Transition begins long before the actual transfer of care Society of Adolescent Medicine. J Adol Health. 1993;14:570-6.

4. Looking back • Spina bifida survival improved dramatically with shunt and bladder management in the 1950-70s • Accessibility and community living has improved greatly from the 1970s to now

5. Looking forward • Spina bifida remains a complex condition with multiple health issues that may need attention on a daily basis • Learning to manage these health issues, plus progress with other life skills takes more time and practice

6. Looking forward • The next challenge is to ensure that all young people with spina bifida get the chance to be as independent as possible • Transition-focused clinics and therapy are a key resource to help assess and teach youth and families these skills

7. The present… • Currently, transition skills are learned in many settings • School, therapy, at home, MM clinic, pediatrician, community groups • There is no “best way” to deliver these services • Specialized clinics provide ideas and peer support

8. Skills to master • Self care ADLs • Bowel, bladder and skin health management • Healthy diet and fitness • Money, medical and household decisions • Social relationships and activities • Educational and vocational achievement • Community mobility

9. Barriers for transition • Time-intensive • Effort intensive • Money (personnel) • Know-how • Competing interests and priorities

10. Barriers for transfer • Comfort with pediatric expert team • Fear of the unknown • Knowledge about it still lacking • Few trained adult providers • Insurance issues for adults • Adults may not be able to take responsibility • Finding supports in the community

11. Opportunities in transferring • Competence in adult care for spina bifida • Adult health and aging issues dealt with • Adult support resources available • Vocational resources more prevalent in adult facilities • Away from pediatric setting • Pride in achievement/success of difficult task • Increased choice/autonomy in decisions • Adult services are lower cost

12. What’s working… • Greater interest and knowledge across pediatrics • Slowly increasing knowledge and interest from adult providers • More role models and mentors

13. Successes • Gillette Lifespan care center • Adult clinic run/started by pediatrics, at own site • Adult care expertise developed by adult providers • Chicago: • transition clinic embedded in multidisc MM clinic • transfer of care: part of team moves to adult clinic with adult providers • Cincinnati: • Primary care approach to transition with vocational services and social work in clinic

14. Looking forward • Need increased contact of adolescents with MM team to identify and plan transition skills building needs and opportunities • Currently adolescents tend to REDUCE visits to clinic, as they are healthy • Vocational counseling needs to be a bigger focus

15. “You said” • A focus group with youth with disabilities shared some insights on what they wanted medical students to understand “I think educating people is important to make them realize we can have real jobs and families too.”

16. “You said” • “I feel out of place with Mickey mouse on the walls, and a baby crying in the next bed.” • “I’ll miss the great doctors and nurses that I’ve known my whole life, I’m sad to leave!” • “I was really scared when I came to the new hospital, but it all worked fine, and now I’m proud I did it!”

17. Transition of adolescence is an important time, with many mixed feelings of fear, anxiety, anticipation and pride. • There are lost relationships, and development of new care relationships which takes time.

18. The next frontier! • Many clinics have recognized the importance of supporting development of adolescent skills, and preparation for adulthood. • Work needs to be done on understanding the impact of cognitive and planning issues.

19. The next frontier! • Peer mentorship and role modeling can play a key role • Set high expectations • Support step-wise skills gains • Celebrate progress! • Offer support at difficult times

20. Healthcare Transition • Adolescent • Developmental level • Learning style • Motor skills • Mental Health • Health Providers • Knowledge • Medical home • Institutional support • Financial/Insurance support • Community • Supported living • Case facilitation • Voc rehabilitation • Family • Health literacy • Family health • Finances • School • Voc/Ed • Living skills • Behavior support

21. The Next Frontier • Clinics will compare outcomes for transition • Need to do capacity building in adult services • Training for adult care providers • Work closely with adult providers to improve care delivery at all levels