Transition to Adult Healthcare:

1
Transition to Adult Healthcare
Health status and Healthcare utilization

• Nancy L. Young BScPT MSc PhD
• and
• The Transitions Research Team

2
Overview

• Why study transition
• Health status before and after transition
• youth vs. adults
• Healthcare use before and after transition
• youth vs. adults
• Discussion
• Acknowledgements

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Transition?

• The process of moving from one state to another
• In the context of CP research there are many
  transitions
• To adulthood
• To purposeful occupation
• To independent living
• To adult-oriented healthcare services

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Why study transition?

• People who have CP are living longer
• Adults with CP need specialized care
• specialized health care services reside at
  childrens rehabilitation centres, which have an
  age limit 18yrs.
• People with CP also require traditional health
  maintenance and promotion
• This care is typically provided by GPs, however,
  GPs lack the training, knowledge and resources
• There is an apparent gap in services, and the
  consequences need to be empirically documented if
  we hope to achieve change

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Transitions Research Program

• Focused on youth and young adults with chronic
  and complex physical disabilities of childhood
  (CCPDC)
• CP, SB, ABIc
• 13-18 years old and 23 to 32 years old
• Research program began in 2000
• with support from the Bloorview Childrens
  Hospital Foundation
• Completed in 2007
• with support from CIHR

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How we studied transition?

• Multi-method project
• Involved 6 recruitment sites in Ontario
• Crossed multiple sectors of health care
• Data collected between 2000 and 2004

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Health Care Utilization Questions

• How often did they go to see a physician?
• What proportion had a primary care physician?
• How often were they admitted to hospital?
• What were the most common reasons for admission?

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Health Services Research Methods

• Data Sources
• Registered Persons Data Base
• OHIP data (Ontario Health Insurance Plan)
• CIHI data (Canadian Institute for Health
  Information)
• Statistical Analyses
• Descriptive
• Comparative (youth vs. adults)

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Brief Orientation to Health Services Research

• Definition of HSR
• focuses on the accessibility, adequacy,
  organization, cost and effectiveness of health
  care services
• Strengths
• Large sample
• Systematically collected data
• Less recruitment bias
• Weaknesses
• Retrospective data analysis
• Coding errors
• No QoL or health status info

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Health Services Sample
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Details on Severity (GMFCS)

• This sample is not like most reported in the
  literature

Severe (GMFCS4 or 5)
Mild (GMFCS1 or 2)
Moderate (GMFCS3)
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How often did youth and adults with CP visit a
physician?
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What proportion had a primary care physician?

• Alternative Definition Primary Care Provider

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How often were youth and adults with CP admitted
to hospital?

• Youth were admitted more frequently
• Adults LOS was longer
• However, we dont know the right rate
• Youth may be higher due to growth
• Adults may be lower due to lack of access
• There are many other possible explanations

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What were the main reasons for these admissions?

• Based on main ICD9 categories

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Detailed Reasons for Admissions among YOUTH

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Detailed Reasons for Admissions among ADULTS

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Reasons for admission

• The top 2 reasons for admission in both age
  groups were epilepsy and pneumonia.
• These results matched with physicians
  expectations.
• Many other reasons were not anticipated by
  physicians and were responsible for many days of
  hospital care
• Mental illness
• Constipation

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Health Status Questions

• How healthy are people who have CP?
• How do the youth compare to the young adults?
• Are there gender differences?
• Are there regional differences?

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Survey Methods

• Data Sources
• Chart Abstraction
• Mail-Administered Survey
• Statistical Analyses
• Descriptive
• Comparative (youth vs. adults)

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Measures of Health

• Self-Rated Health
• Health Utilities Index Mark III (HUI3)
• Assessment of Quality of Life (AQoL)

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Health Survey

• Sample

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How healthy are people who have CP according to
Self-Rated Health?

• In general, would you say your health is
• 54 of people with CP report their health is
  excellent or very good
• 60 of the Canadian population report their
  health is excellent or very good

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Canadian Norms
Source Statistics Canada. Self-rated health, by
age group and sex, household population aged 12
and over, Canada, provinces, territories, health
regions (June 2005 boundaries) and peer groups,
every 2 years (CANSIM Table 105-0422). Ottawa,
Statistics Canada, 2006.
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Self-Rated Health (SRH) by Age Group by Region

• 58 of youth have very good or excellent SRH
• 47 of adults have very good or excellent SRH
• Furthermore, SRH appears worse in the north,
  where 31 reported very good or excellent SRH vs.
  56 in the south.

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Proportion with excellent or very good health by
age group and gender

• Girls report better health than boys
• Trend is reversed in adulthood

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According to Health Utilities (HUI) Scores
Perfect Health
1
adults with other severe chronic conditions 0.87
.5
.5
HUI3 Summary Score
0
Death
0
-.5
-.5
Mean HUI 0.30 (CI 0.24-0.36)
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HUI Domain Scores
Youth
Adults
1
.5
0
Ambulation
Ambulation
-.5
Dexterity
Cognition
Emotion
Dexterity
Emotion
Cognition
Hearing
Hearing
Vision
Speech
Vision
Speech
HUI
Pain
HUI
Pain
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Can we predict future health?

• GMFCS scores from childhood charts predict 50 of
  the variance in HUI scores later in life
• Gender and Age have little effect
• Slightly better for females (54) than males (47
  of variance)
• Slightly better for youth (51) than adults (47
  of variance)
• GMFCS is not a strong predictor of Self-Rated
  Health

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Assessment of Quality of Life (AQoL) Scores

• The story is similar to the HUI but with
  slightly lower scores (r0.87)

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Discussion

• The health data appear relatively similar in
  youth and adults
• provides hope for the future of this population
• There is a lack of primary care for this at
  risk population
• The admissions rates are very high and the data
  identify new reasons that must be watched for
  (e.g., mental illness, malnutrition, fractures in
  adults)

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Further research is needed

• Is there a causal relationship between health
  status and the use of services?
• Does poor health cause more services to be used?
• Does the use of more services lead to better
  health?
• If so, will primary care and better information
  on what to watch for lead to a reduction in
  admission rates?

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ACKNOWLEDGEMENTS
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Transitions Research Team

• Nancy L. Young (PI)
• Investigators
• Katherine Boydell Anna McCormick Mary Law Sue
  Mukherjee Darcy Fehlings John Wedge Peter
  Rumney.
• Research Staff
• Wendy Mills Wendy Barden Anne Ayling-Campos
  Aliza Sturm, Erika Schippel Tom Gilbert Tricia
  Burke

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The Participating Centres

• Bloorview MacMillan Childrens Centre
• C. Steele, B. Almos
• Sudbury Childrens Treatment Centre
• S. Spence, M. Bizier, J. Tramontini
• Childrens Rehabilitation Centre Algoma
• S. Vanagas-Coté, J. Korab, J. Hamel
• Erinoak
• G. Hogan, J. Greenaway, J. Blinn, M. Hunter
• KidsAbility Centre for Child Development
• E. Goldberg, S. Helwig, B. Mench
• Ottawa Childrens Treatment Centre
• J. McLean, M. Lysyk, A. Azurdia

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Funding Agencies

• The Bloorview Childrens Hospital Foundation
  (BCHF)
• Pilot study in 2000
• Operating grants for parts A B 2002 and 2003
• The Canadian Institutes of Health Research (CIHR)
  
• Parts B, C and D Oct. 2003 - Oct. 2006

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THANK YOU

Evaluating Childrens Health Outcomes