Overview of transitional care at the MacMEDucation Conference 2016

1. Youth with chronic
medical/developmental concerns
during transition to adulthood
MacMEDucation Conference 2016
Olaf Kraus de Camargo
@DevPeds

2. The Transition Experts at McMaster
• Dr. Jan Willem Gorter: Transition Doctor @Dr_Gorter
• Dr. Christina Grant: Christina @ChgranChgrant
• Dr. Natasha Johnson: Natasha Johnson @JohnsonTasha848

3. What is an adult?
• You are allowed to get married?
• You are allowed to drive a car?
• You are allowed to kill people as a soldier?
• You are allowed to drink alcohol?
• You are allowed to vote?
• You are allowed to take care of your own health?

4. What is an adolescent?
“WHO identifies adolescence as the period in
human growth and development that occurs
after childhood and before adulthood, from
ages 10 to19."
http://www.who.int/maternal_child_adolescent/topics/adolescence/dev/en/

6. Adolescents in Canada

7. What are the risks for adolescents
with chronic health issues?
• Long term perspective x living the moment
• Prone to risk seeking behaviour
• Importance of peer opinion and support
• Striving for independence

8. What kills adolescents?Rate by 100.000
http://www.phac-aspc.gc.ca/cphorsphc-respcacsp/2011/cphorsphc-respcacsp-06-eng.php

9. How many live with a chronic health
condition?
• Multimorbidity (population over 20yrs):
• 14.5% live with 2 or more chronic diseases
• 4.7% live with 3 or more chronic diseases
• Disability (population over 12 yrs.):
• 33.9% of population reports being limited in their activities
sometimes of often due to disease/illness
http://www.phac-aspc.gc.ca/publicat/hpcdp-pspmc/34-1-supp/index-eng.php

10. Youth with disabilities often experience poor health
outcomes when transitioning from pediatric to adult care
due to the lack of communication and coordination
between the two systems of care.
(Gorter, Stewart &Woodbury-Smith, 2011; Stewart et al., 2009)
Challenge with Transition

11. • In Canada: 25,693 cases between 1 and 19 yrs.
• Onset as early as during the first year of life, but generally between 10
and 14 years of age
• Canada was found to have one of the highest incidence rates of type
1 diabetes for children under 14 years of age
Example - Diabetes
Government of Canada PHA of C. Diabetes in Canada: Facts and figures from a public health perspective -
Public Health Agency of Canada. 2011;1–12. Available from: http://www.phac-aspc.gc.ca/cd-
mc/publications/diabetes-diabete/facts-figures-faits-chiffres-2011/highlights-saillants-eng.php#chp1

12. • Good glycemic control:
• 32% of youth between 13 -18 years
• 18% of young adults over 19 years
• 56% of older adults
Example - Diabetes
Peters, A. & Laffel, L. Diabetes care for emerging adults: Recommendations for transition from pediatric to
adult diabetes care systems. Diabetes Care 35, 191 (2012).

13. • About 1000 transplants per year in Canada
• 6 year waiting list
• 1-year graft survival rate is 97.0%
• 5 years graft survival rate is 77.9%
• 10-year graft survival has improved to a rate of 60.2% after transplant
in 2001 in comparison to 46.8% in 1987
Example – Kidney Transplant
Annunziato RA, Parbhakar M, Kapoor K, Matloff R, Casey N, Benchimol C, et al. Can transition to adult care
for transplant recipients be improved by intensified services while patients are still in pediatrics? Prog
Transplant. 2015;25(3):236–42.
Picard A. Transplant waiting lists and dialysis costs grow as kidney supply lags behind. Globe Mail [Internet].
2011;(Jan 20). Available from: http://www.theglobeandmail.com/life/health-and-fitness/transplant-waiting-
lists-and-dialysis-costs-grow-as-kidney-supply-lags-behind/article569465/

14. Example – Kidney Transplant
• 8 of 25 had a
graft loss in 24
months
• 3 of them died

15. Example – Kidney Transplant
• No graft loss in
12 patients

16. Falling off a cliff!

17. Fundamentals for a smooth
transition
1. One identified person responsible for the transition process
2. Development and Empowerment of core competencies
3. Portable and easily accessible summary of the health history
4. Up-to-date transition plan
5. Maintenance of the usual preventive health measures
6. Continuity of health insurance
Rosen, D. S., et al. (2003). "Transition to adult health care for
adolescents and young adults with chronic conditions: position
paper of the Society for Adolescent Medicine." J Adolesc Health
33(4): 309-311.

18. Transition
Phase I: preparation
The ‘preparation’ phase takes place during a youth’s
late childhood and early adolescence as they begin to
look ahead and prepare for adult life (Stewart et al.
2009).

19. Transition
Phase II: the journey
The ‘journey’ phase takes place during the transition itself,
and represents a period in which the adolescent is
experiencing changes from one developmental stage,
environment or role to another (Stewart et al. 2009).

20. Transition
Phase III: the landing
The phase of ‘landing’ in the adult world recognizes that
adolescents will reach a destination, with outcomes and
goals being met, and time taken to ‘refuel’ before starting
on another journey along their life course (Stewart et al.
2009).

21. TimelineAge
(Years)
Key elements for planning
0 – 3 Stimulate the child to do easy tasks on its own. Early intervention services.
3 - 5 Give children chores that they are able to do. Create opportunities for social contact and interactions.
Find adequate preschool programs.
6 - 10 Start to ask: “What do you want to be when you grow up??”
8 - 10 Give the child opportunities to interact on its own with health professionals and assume responsibility
for its own health
10 - 11 Talk about job options and identify specific interests and talents. Talk about how the disability can
influence the job options.
12 Transition manuals and check lists can help adolescents to find out about their goals and determine
which skills they want to develop further.
Blomquist, K. B., et al. (1998). "Transitioning to independence: challenges
for young people with disabilities and their caregivers." Orthop Nurs 17(3):
27-35.

22. TimelineAge
(Years)
Key elements for planning
12 Transition manuals and check lists can help adolescents to find out about their goals and determine
which skills they want to develop further.
12 – 13 Support adolescents to accept small jobs or to volunteer
13 - 14 Provide written information about the options and supports for training and post-secondary education
for people with disabilities.
14 Develop a transition plan
14 – 18 Ask the adolescent about his/her plans for the future and how they can be realized. Provide specific
information about how to acquire job relevant skills
18 - 19 Support the young adult to find the adequate medical care for adults and prepare all the information
necessary for that service.
Blomquist, K. B., et al. (1998). "Transitioning to independence: challenges
for young people with disabilities and their caregivers." Orthop Nurs 17(3):
27-35.

23. Examples
• YARD
• Young Adults with Rheumatic Diseases
• Hospital based program
• Pediatric and adult rheumatologists see the adolescent together
• Multidisciplinary team
• Social work offers job counseling
• Contacts to alternative medicine approaches are provided (Traditional Chinese
medicine, acupuncture, naturopathy)
Grant, C. and J. Pan (2011). "A comparison of five
transition programmes for youth with chronic illness
in Canada." Child Care Health Dev 37(6): 815-820.

24. Examples
• BYOB (Be Your Own Boss):
• Young adults with chronic health conditions work as ”health
coaches” and lead a group of adolescents
• 6 week workshop with accompanying materials
• Goal is to learn self-management strategies
Grant, C. and J. Pan (2011). "A comparison of five
transition programmes for youth with chronic illness
in Canada." Child Care Health Dev 37(6): 815-820.

25. Examples
• Maestro Project:
• Centralized coordination service for youth with diabetes
• Has the goal to reduce the drop-out-rate after the transfer to adult
healthcare
• A mentor or “Maestro” is available by phone or email and can
assist in coordinating appointments
• Website, newsletter, drop-in clinic (no appointment needed),
presentations
http://www.maestroproject.com
Grant, C. and J. Pan (2011). "A comparison of five
transition programmes for youth with chronic illness
in Canada." Child Care Health Dev 37(6): 815-820.

26. Examples
• ON TRAC/ON TRAC2:
• Not a specialized transition team but within each subspecialty
transition is managed
• One nurse is available as a case coordinator
• “Your Plan IT” – Is a binder with the most important health
information and the transition plan
Grant, C. and J. Pan (2011). "A comparison of five
transition programmes for youth with chronic illness
in Canada." Child Care Health Dev 37(6): 815-820.

27. Examples
• Good2Go
• Transition team is available for all specialties (SickKids)
• Doctor, Nurse, Psychologist, Social Worker
• Offer a transition clinic and coaching for specialists from other
disciplines
• MyHealthPassport – short information for different health issues
https://www.sickkids.ca/myhealthpassport/
Grant, C. and J. Pan (2011). "A comparison of five
transition programmes for youth with chronic illness
in Canada." Child Care Health Dev 37(6): 815-820.

28. Shared Management Model
Transition Specialist Parents/Family Patient
Childhood Main responsibility Cares/supports Receives care/support
Early
adolescence
Supports
parents/family and
child/youth
Manages/coordinates participates
Late
adolescence
Counsels Supervises/leads Manages/coordinates
Adulthood Informs Counsels Supervises/leads
http://www.sickkids.ca/Good2Go/index.ht
ml

29. YouthKITTM - Video

30. Health Information

31. Self-Care

32. Leisure

33. Outcome
• YouthKITTM increased the autonomy of Youth in collecting and
sharing information
• Increased the knowledge of youth about their own strengths
• Introduced youth into future adult roles and future planning
• Developed a better understanding of their own interests and
preferred activities and to consider those for future plans
Gorter, J. W., Stewart, D., Cohen, E., Hlyva, O., Morrison, A., Galuppi, B., Nguyen, T …Weiser, N. (2015). Are
two youth-focused interventions sufficient to empower youth with chronic health conditions in their transition to
adult healthcare: a mixed-methods longitudinal prospective cohort study. BMJ Open, 5(5), e007553–e007553.
doi:10.1136/bmjopen-2014-007553

34. A successful transition
https://vimeo.com/68925300