Spina Bifida and transition to adult life

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Spina Bifida and transition to adult life

• Sue Mukherjee MD, Chicago
• Childrens Memorial Hospital and
• Rehabilitation Institute of Chicago

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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

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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 a Process, not an Event
• Transition begins long before the actual transfer
  of care

Society of Adolescent Medicine. J Adol Health.
199314570-6.
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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

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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

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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

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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

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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

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Barriers for transition

• Time-intensive
• Effort intensive
• Money (personnel)
• Know-how
• Competing interests and priorities

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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

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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

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Whats working

• Greater interest and knowledge across pediatrics
• Slowly increasing knowledge and interest from
  adult providers
• More role models and mentors

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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

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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

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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.

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You said

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

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• 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.

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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.

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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

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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

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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

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