Assessment of Readiness for Health Care Transition in Adolescents

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Assessment of Readiness for Health Care
Transition in Adolescents

• David Wood, MD, MPH
• William Livingood, PhD
• Edessa Jobli, MD, MPH
• Deborah Ducett, MSW

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• Jacksonville
• Health And Transition Services
• A Collaboration between the Departments of
  Pediatrics and Internal Medicine

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Transition for Youth with Special Health Care
Needs (YSHCN)

• The purposeful, planned movement of adolescents
  and young adults with chronic physical and
  medical conditions from child-centered to
  adult-oriented health care system.
• Society for Adolescent Medicine. J Adolesc
  Health. 1993 14570-576
• Healthy People 2010 Objective is to ensure that
  YSHCN receive the services necessary to
  transition to all aspects of adulthood, including
  from pediatric to adult health care, from school
  to employment and to independence.
• US DHHS. www.hhs.gov/newfreedom/final.

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Life Expectancy - Cystic Fibrosis



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Barriers to Transition

• Termination of pediatric services with poor
  hand-off
• Preparation, referrals or hand-off
• Lack of preparation of Adult health care
  providers
• Issues clinical management, patient
  development, communication
• Access to adult specialistsdelays, geographic
  availability
• YSHCN/families not prepared for transition
• Care issues, system issues, health insurance
• Developmental Level of YSHCN
• Loss of health insurance, CMS funding
• School to work transition
• Limited Access to support services (e.g. waiver,
  care coordination, change in SSI eligibility)

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Insurance Barriers

• Young adults have the lowest insurance rate of
  any age group 064 years
• 37.7 of males and 30.7of females aged 1824
  years were uninsured at any point during the past
  year
• Poor, minority, low educational attainment
• Reasons for loss of insurance
• young people become ineligible for their parents
  insurance
• coverage for public insurance ends at 19 or 22
• SSI rules change at 18condition must prevent
  any gainful activity as opposed cause marked
  and severe functional limitations

Callahan ST, Cooper WO. Uninsurance and health
care access among young adults in the United
States. Pediatrics 200511688 95
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JaxHATS A Medical Home During Transition

• Adolescent Primary Care Services
• Primary Care Medical Home
• Wellness/Preventive Services
• Sexuality
• Care Coordination/Education
• Medical Referrals
• Specialty Care
• Mental Health
• Medications, Supplies, Equipment
• Transition Support
• Independence and self mgmt.
• Educational/Vocational
• planning

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Patient/Family GoalsFor Transition

• Manage their own health health care
• Disease self-management
• Preventive health care
• Sexuality
• Appropriately access adult primary care,
  specialists, therapies, equipment, supplies, etc.
  
• Know how to get and keep health insurance
• Plan implement education/vocational goals

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Transition Assessment Instruments

• Validated questionnaires to measures skills and
  abilities for successfully HC transition are not
  available.
• We developed and tested the face/content validity
  and internal reliability of a transition
  readiness questionnaire for YSHCN.

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INTERVENTION PROCESS INTERMEDIATE
LONG-TERM MEASURES OUTCOMES OUTCOMES
Transition Program

• Client Focused
• Client Assessment of health care needs,
  educational, vocational, living goals
• Education Self-directed learning
• Comprehensive Primary Care
• Specialty Care
• Care Coordination
• Patient Family Advocacy

• Client Readiness for Transition
• (Stages of Change)
• Access To Medical Care
• Keep a Medical History
• Communicating With Your Doctor, Nurse Or Clinic
  Staff
• Managing Medications
• Managing Medical Equipment/Supplies
• Managing Health Insurance
• Managing Self Health Care
• Managing Job Or School
• Managing Daily Living Activities
• Managing Personal Safety
• Using Community Resources

• Health Care
• Utilization
• Independent reliable use of primary and
  specialty care
• Reduced ER use
• Disease Self- Management
• Disease Understanding
• Compliance
• Disease control
• Self-efficacy
• Education/ Vocation
• Staying in school
• Working toward goals
• Independent Living
• Working toward goals

• Optimal Health Outcomes and
• Quality of Life
• Functional status
• Health-related Quality of Life
• Disease specific outcomes
• Achievement of Academic Goals.
• Achievement of Vocational Goals
• Achievement of Independent Living Goals

• Pediatric Health Care System
• Early Identification, assessment, education,
  preparation
• Coordinated Referral Hand Off
• Adult Health Care System
• Competent
• Accessible
• Comprehensive
• Continuous
• Educational/Vocational/Social
• Adequate Accommodations
• Adequate Supports

• System Focused
• Training/Advocacy with Pediatric Adult
  Providers
• Advocacy in Insurance System
• Advocacy in the adult HC system
• Advocacy in Education/Vocation Systems

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Initial Item Scale development

• We conducted a review of existing transition
  readiness questionnaires developed from practice
  settings.
• We identified 79 medical care items and 113
  community/independent living focused items
  critical to successful health care and life
  transition
• The consolidation process to
• remove redundancies
• consolidate KAB items into skills items
• 62 questions
• Organized into 11 constructs
• The Stages of Change Model adapted for response
  sets to on a continuum from a lack of awareness
  to regular practice of a desirable behavior
  associated with independent adulthood.

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Ethnographic Interviews with Youth Expert Input

• 15 ethnographic interviews with adolescents to
  assess content, wording/literacy level,
  intelligibility
• Revision of specific wordings, unclear phrases
• Revised to Flesch-Kincade Grade Level 5.7
• The instrument was sent to experts in the field
  of health care transition, who were asked to
  prioritize items and categories, and provide
  feedback on item content. Items were rated from
  1 (not important) to 5 (highest importance).
• N18 experts completed the questionnaire
• Average years in practice 21.75 years
• Average years in transition-related services
  9.22 years

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Expert Validation (N 18)
Response Categories 1 Not important 2Low
Importance 3Moderately Important 4Very
Important 5Highest Importance
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Expert Rating of Items

• Based on ratings and written comments
• 20 items consolidated/removed
• 62? 42 items
• 62 Item questionnaire administered to 33
  adolescents
• Cronbach alpha for internal reliability
• Cronbach's a (alpha) has an important use as a
  measure of the reliability of a psychometric
  instrument. It indicates the extent to which a
  set of test items can be treated as measuring a
  single latent variable Wickipedia, accessed
  April 20, 2007
• Retest of FA Cronbach alpha after item reduction

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Number of Items Per Category
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Results of Reliability Analysis of Readiness
Scales (N33)
Mean of inter-item correlations
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Results of Reliability Analysis of Readiness
Scales (N19)
Mean of Inter-item correlations
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Conclusions Next Steps

• We obtained expert and youth input into the
  development of an questionnaire to assess
  readiness for transition
• Resulting 42 items questionnaire has good face
  validity, internal reliability and factor
  cohesion
• Next steps is a criterion validation
• Prediction of successful transition,
  self-management
• Correlation with clinician (MD, RN) assessment