Transition Outcomes of Young Adults with Special Needs Sharon Brissette Kathleen Montpetit Joanne Ru

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Transition Outcomes of Young Adults with Special
Needs Sharon BrissetteKathleen
MontpetitJoanne Ruck-GibisShriners Hospital
for Children -Montreal, Quebec
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Shriners Hospital for Children

• 22 hospitals in North America
• Elective orthopedics, spinal cord injuries, burns
• Birth to 21 years
• Family centered care

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Shriners Hospital

• Unique role in Montreal Quebec
• Expertise in Pediatric Orthopedics
• Closely linked to pediatric centers

Shriners Hospital
General Peds Emergency
Rehab Centers Community
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Shriners HospitalHealth Care Delivery Model
Care Coordination
Clinical Outcomes
Transition Program
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Transition ProgramEmpower Educate Refer

• Individual interview
• Resource Library
• Transition Seminar
• Client Advisor
• Social Events

• Local Community Networking
• Government Lobbying

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Clinical Outcomes ProgramImprove Patient Care

• Promote evidence based practice
• Program evaluation
• Population profiles
• Outcomes projects
• Family perspectives
• Clinician initiatives

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Background

• 1979-2001 20 years of multi-disciplinary
  clinics
• 2002 Outcome study to review the SB population
• Retrospective chart review of demographics,
  functional status, mobility, ADL, nutrition, etc.
• 2003 Interdisciplinary outcome project (3 parts)
• Urology treatment (botox)
• Pressure sores post spinal fusion
• Transition Committee ? outcomes of adults SB
• 2004 Spina Bifida and Cerebral Palsy graduates

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Transition Outcomes of Young Adultswith Special
Needs Purpose How are they doing ?

• Assess health status
• Measure level of function
• Measure level of participation
• International Classification of Functioning,
  Disability, Health (WHO)

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Purpose

• Status and input of former patients provide
  guidance to transition committee
• Identify needs to allow smoother transition to
  adulthood
• How are we doing ?

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Background Spina Bifida Clinic

• Multi-disciplinary ? interdisciplinary clinic
• Care coordinator
• Team meetings with goal setting
• Multidisciplinary functional outcome tool
  (WeeFIM)
• Client centered approach
• Interdisciplinary outcomes studieswith objective
  measures

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Methodology

• 1997-2002 66 patients reached 21 yrs were
  transitioned to adult health care
• Spina Bifida (35) Cerebral Palsy (31)
• 20 item questionnaire developed by Transition
  Committee
• Open ended questions 3-5 pt scale
• Sent to parent and former patient
• Retrospective chart review

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Results demographics

• Spina Bifida N 35
• 1 deceased
• 4 lost to FU
• 30 charts ( average age 23.5 yrs)
• 13 questionnaires, 2 wrong address
• Cerebral Palsy N 31
• 31 charts (average age 22 yrs)
• 13 questionnaires, 1 phone call, 2 wrong address

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SBResults Body Structure Function

• Health excellent /very good 69
• Access to FU medical
• Bladder Issues, pressure sores
• Results Function
• Excellent independence in mobility, self care,
  transfers
• Average WeeFIM score 88
• Majority use wc as main mobility

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SBResults Participation

• Sports infrequent
• School 48 post sec. education
• Social 50 movies, church
• Leisure 100 enjoy TV, books,
• Currently (29)
• 38 working
• 38 school
• 24 nothing

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SBResults Participation

• Transportation (13)
• 23 drive car
• 77 use public/adapted transport
• Living Arrangements (19)
• 52 Independent living
• 42 Family home
• 5 Supervised appt (1)

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Adult Spina Bifida Outcomes ResultsWhat do you
need to ? Independence

• Housing/vehicle modifications
• More experience making decisions
• Help to get a job
• Counseling/support
• Nothing
• Personal care attendant
• Managing health condition

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Adult Spina Bifida Outcomes Literature Review

• 50-86 receive disability benefits
• (25 - 30 are in competitive employment
• 10 have advanced level of learning
• 20-30 are continent of bowel and bladder
• 23-37 are driving
• 16-24 are sexually active /have partner
• (Kokkonen,et al1991,Mier2003, Tew,Laurence,Jenkin
  s 1990, Hunt 1995,2003)

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Background CP clinic

• Multidisciplinary
• Multiple doctors, multiple therapists
• Multiple sites school, hospital, rehab
  center,seating clinic, CLSC.
• Linear model
• Botox/rhizotomy/baclofen/surgery/therapy

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CPResults Body Structure Function

• Health 46 described good
• 63 receiving Medical FU, 90 access to med.
• Cognitive issues ( 60)
• Seizures, musculoskeletal pain, surgery

Results Function

• VG mobility walking, 50 use wc part time
• Difficulty with bath transfers
• 3 dependant for self care

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CPResults Participation

• School 22 attended university/college
• Sports 66 do some physical activity
• Social 90
• Leisure 90
• Currently (N16)
• Working 43
• School 12
• Nothing 43

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CPResults Participation

• Transportation (N 13)
• 31 drive car
• 23 use public/adapted transport
• Living Arrangements (N 14)
• Independent living 8
• Family Home 69
• Foster family/Group Home 23

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Adult CP Outcomes ResultsWhat do you need to ?
Independence

• Education
• Help to get a job
• More experience making decisions
• Transportation
• Housing/vehicle modifications
• Nothing
• Community recreation
• Drivers education

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Adult CP OutcomesLiterature Review

• 75-88 living in family home
• 53 living independently (with assistant)
• 7-17 competitive employment
• 33-53 sheltered and competitive work
• 10 university/college
• 30 regular school
• ( Sillanpaa et al 1982, Stevenson et al 1997,
  Bottos et al 2001)

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Adult CP OutcomesLiterature Review

• 30 surgery, 50 ortho surgery
• Hip, back, muscle pain
• Cessation of ambulation
• Due to pain
• Broader access in wheelchair
• Improved efficient mobility using wc

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Adult Outcomes CP SBResults

• All parents rated Shriners very highly for
  contributing tohealth and independence
• Finding adult health care SB 8/12 CP 3/13
• Learn to make decisions SB2/12 CP 4/13
• Common goals stated by parent young adult
• Job
• Partner
• Living alone
• drive

However
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Summary

• How are they doing
• SB fair level of independence and employment but
  socially isolated.
• CP participating in phys exercise and social
  activities but education limitations.
• Not involved in decision-making process

• How are we doing
• SB care coordination working ?independence
• CP poor early detection of learning issues
• Patients are healthy receiving multiple
  treatment options.

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Transition Outcomes Analysis/Reflections

• Graduates rate themselves as relatively healthy.
• Aspirations of child and parent-universal
• Results were similar to the literature
• Social contact and employment how can we improve
  here ?
• Empower patient to make decisions how can we
  improve ?

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Modifying Practice

• Social domain focus of transition program
  integrated into the clinic goals
• IADL shopping, bus, meal prep, etc key
  elements of OT evaluation
• Producing and providing tools to enhance decision
  making.
• Individualized transition plan with community
  partners.

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Future Outcomes Projects

• Evaluation of quality of life of young CPand SB
  adults
• Further outcome studies of additional diagnoses
  (CP, SB, OI)
• Modify CP clinic to interdisciplinary model

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Next Steps

• Community task force working with
• regional health board
• Involve education system
• Develop work programs
• Develop continums of care
• Links with community resources

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Merci beaucoup!

• THANK YOU!