Transition to Adult Healthcare:

1. Transition to Adult Healthcare: Health status and Healthcare utilization Nancy L. YoungBScPT 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

3. 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

4. Why study transition? • People who have CP are living longer • Adults with CP need specialized care • specialized health care services reside at children’s rehabilitation centres, which have an age limit ~ 18yrs. • People with CP also require traditional health maintenance and promotion • This care is typically provided by GP’s, however, GP’s 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

5. 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 Children’s Hospital Foundation • Completed in 2007 • with support from CIHR

6. 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

7. 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?

8. 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)

9. 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

10. Health Services Sample

11. This sample is not like most reported in the literature Details on Severity (GMFCS) 21.2% 23.3% Severe (GMFCS=4 or 5) Mild (GMFCS=1 or 2) 12.5% 24.9% 18.1% Moderate (GMFCS=3)

12. How often did youth and adults with CP visit a physician?

13. What proportion had a primary care physician? • Alternative Definition – Primary Care Provider

14. How often were youth and adults with CP admitted to hospital? • Youth were admitted more frequently • Adults LOS was longer • However, we don’t 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

15. What were the main reasons for these admissions? • Based on main ICD9 categories

16. Detailed Reasons for Admissions among YOUTH

17. Detailed Reasons for Admissions among ADULTS

18. 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

19. 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?

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

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

22. Health Survey • Sample

23. 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” fair/poor excellent 16% 20% very good good 30% 34%

24. 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.

25. 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. Self-Rated Health (SRH) by Age Group & by Region

26. Girls report better health than boys Trend is reversed in adulthood Proportion with excellent or very good health by age group and gender

27. 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)

28. HUI Domain Scores Youth Adults 1 .5 0 Ambulation Ambulation -.5 Dexterity Emotion Cognition Dexterity Emotion Cognition Hearing Hearing Vision Speech Vision Speech HUI Pain HUI Pain

29. 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 Can we predict future health?

30. 1 .5 0 -.5 F M F M Youth Adults HUI AQoL Assessment of Quality of Life (AQoL) Scores • The story is similar to the HUI but with slightly lower scores (r=0.87)

31. 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)

32. 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?

33. ACKNOWLEDGEMENTS

34. 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

35. The Participating Centres… Bloorview MacMillan Children’s Centre • C. Steele, B. Almos Sudbury Children’s Treatment Centre • S. Spence, M. Bizier, J. Tramontini Children’s 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 Children’s Treatment Centre • J. McLean, M. Lysyk, A. Azurdia

36. Funding Agencies: • The Bloorview Children’s 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

37. THANK YOU Evaluating Children’s Health Outcomes