Transcript Spina Bifida and transition to adult life

Spina Bifida and transition to
adult life
Sue Mukherjee MD, Chicago
Children’s Memorial Hospital and
Rehabilitation Institute of Chicago
Transition
 The process of learning and mastering skills
needed for successful adult life
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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
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. 1993;14:570-6.
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
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
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
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
Skills to master
 Self care ADLs
 Bowel, bladder and skin health management
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Healthy diet and fitness
Money, medical and household decisions
Social relationships and activities
Educational and vocational achievement
Community mobility
Barriers for transition
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Time-intensive
Effort intensive
Money (personnel)
Know-how
Competing interests and priorities
Barriers for transfer
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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
Opportunities in transferring
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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
What’s working…
 Greater interest and knowledge across
pediatrics
 Slowly increasing knowledge and interest
from adult providers
 More role models and mentors
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
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
“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.”
“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!”
 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.
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.
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
Healthcare Transition
Adolescent
Health Providers
•Developmental level
•Learning style
•Motor skills
•Mental Health
Family
•Health literacy
•Family health
•Finances
•Knowledge
•Medical home
•Institutional support
•Financial/Insurance support
School
•Voc/Ed
•Living skills
•Behavior support
Community
•Supported living
•Case facilitation
•Voc rehabilitation
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