1. Dr Elizabeth Tullis Toronto Adult CF Centre University of Toronto
You say goodbye and I say hello: Transition from pediatric to adult care
Dr Elizabeth Tullis
Toronto Adult CF Centre
University of Toronto

2. Faculty Disclosures No conflicts of interest related to this talk
Advisory board:
Novartis
Gilead
Mpex
Research grants:
GSK
Vertex
Faculty notes: Please list on this slide any potential conflicts of interest (COI) you reported to the ACCP when agreeing to speak for this course or any new, previously not disclosed, potential COIs that you have . OR
Simply type in “no potential conflicts of interest to disclose.”

3. Learning Objectives After this session, learners will be able to:
Recognise the difference between pediatric and adult models of care
List the barriers to transition from pediatric to adult care
Understand strategies to promote successful transition
Faculty notes: When you’re writing objectives, ask yourself “What do you want the learner to “take away” as a result of participating in this learning activity?” If you write your learning objectives first, you’re content, including cases and questions, will naturally flow from what it is you say you want the learners to know and/or understand.
What is a learning objective? An objective is a statement of what learners will be able to” know or understand” when they have completed your session.
An objective is:
1. Related to intended outcomes, rather than the process for achieving them, eg,
you want your learner, as an intended outcome of your lecture, to be able to
“recognize key historical factors that make clinicians suspect a clinical diagnosis of COPD,” or
“describe risk factors, physical exam findings, and clinical situations associated with a difficult airway.”
2. Specific and measurable, rather then general and broad, eg,
“recognize the appropriate daily treatment shown to improve outcomes in patients with moderate to severe COPD accordingly to the GOLD guidelines.”
3. Concerned with the learner, not the teacher
Based on Bloom’s Taxonomy, here are a few common “effective action verbs” that are appropriate for you to use to create your learning associated with your case/question lecture:
Choose
Describe
Recognize
State
Select
Indicate
Identify
Differentiate
Determine
Classify
Explain

4. Transition is a process
Transfer is the moment of change
This is where the majority of your presentation will go. Please remember these simple tips:
PowerPoint tip:
Use 1 to 2 slides per minute of your presentation.
Write in point form, not complete sentences.
Include 4 to 5 points per slide.
Avoid paragraphs, quotations, and even complete sentences.
The average adult can listen with understanding for about 90 min but listens with retention for only about 20 min. That means that you, as the speaker, should change the pace about every 20 min. This could mean doing something as simple as asking an audience response question or reviewing a different case example.

5. Life is a transition Many transfer moments Start high school
Start college/university
First job
Move away from home
Transition to adulthood and transfer points are difficult even for normal healthy people.
Regular pediatric followup and scheduled immunizations changes to new MD and visits when sick.

6. What does transition really mean?

7. Transition
“the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-oriented health care systems”
American Society for Adolescent Medicine J Adoles Health 1993
Did not really become an issue until 1980s
Recognised as important but no clear model for health care transition
Models are:
No transfer – ongoing care by pediatric centre
Shared care
Transfer of care to adult centre
No care – ie lost to follow up.

8. Models of Care Pediatric Care Adult Care Family-centred
Protective/nurturing
Prescriptive
Focus on development and growth
Adult Care
Independence (emotional and financial)
Autonomy for health
Collaborative
Empowering

9. Pediatric setting not ideal for adult patients
Parental-type relationship reduces independence
Adult issues
Sexuality, pregnancy, work, financial concerns
Disease-related adult complications
Chairs too small

10. Transition is a positive step
Graduation
Rite of passage
In illness, transition implies hope for future
PowerPoint tip:
Use graphs rather than charts and words.
Data in graphs are easier to comprehend and retain than raw data.
Trends are easier to visualize in graph form.
Always title your graphs. 10

11. Transition can be challenging

12. Obstacles to successful transition
Adolescents
Reluctant to leave known and trusted staff
Delay in developmental steps (self perception as dependent)
Fear of unknown
Closer to death
Parents
Reluctant to relinquish control & involvement
Reluctant to leave team that “kept child well” 12

13. Obstacles to successful transition……2
Pediatric Caregivers
Hard to “let go”
Lack of trust in adult services
Funding issues due to decreased pt numbers
Adult Caregivers
No knowledge or interest in “pediatric” disease in adults
No training in adolescent issues
Lack of administrative support
Financial liability
Adult care givers: patients just need to grow up!!! 13

14. Obstacles to successful transition ….. 3
Structural and service issues
Poor communication between hospitals for transfer of medical records
Insurance coverage
Lack of appropriate space
Lack of institutional support for health professionals
PowerPoint tip:
Use graphs rather than charts and words.
Data in graphs are easier to comprehend and retain than raw data.
Trends are easier to visualize in graph form.
Always title your graphs. 14

15. Transition in cystic fibrosis
Transition from pediatric to adult care is considered part of standard practice
CF Adult Care: Consensus Conference Report Chest 2004
Both the American and Canadian CF Foundations support transition to adult care and have guidelines and policies
Well established multi-disciplinary model of care for CF makes transition process easier

16. Transition in cystic fibrosis
CF adults generally report no significant concerns regarding transfer
Surveys show patients satisfied with models that have joint meeting(s) with pediatric and adult care providers prior to transfer
Parent’s concerns > Adolescent’s concerns
Pediatric caregiver’s concerns > Adult caregiver’s concerns
Health team’s concerns > Patient’s concerns
Flume et al Pediatric Pulmonology 2001
Anderson et al Pediatric Pulmonology 2002

17. Key elements for effective transition
Policy on timing
Flexible re transfer age, developmental milestones reached
Preparation and education
Transition starts at diagnosis
Understand disease and management
Independent self care – recognising when sick & how to get help
Teach skills of communication, problem solving, self advocacy
Coordinated transfer process
Written plan
Transition coordinator
Transition clinics, overlap of care
Need to have a transfer date – cannot use case by case process – no one says “we are not going to transfet this child to high school as they are going thru a rough patch with parent’s divorce etc” - you PREPARE and SUPPORT the child.
Preparation is key - expectations set at beginning and need to learn skills for adulthood
Transfer process outlined and clear to both teams – some have a “graduation” from pediatric care

18. Key elements for effective transition
Interested and capable adult service
Be an expert on the disease
Learn about normal development & adolescent behaviour
Administrative support
Medical summary
Transfer of records
Staffing resources
Evaluation of process

19. Toronto transition program in CF
~ adolescents transfer to adult CF centre/yr
Transition starts at time of diagnosis with gradual shift of responsibility from parents to child
Transfer at yrs (at school-leaving)
Pediatric RN and adult NP act as transition coordinators
Transition rounds ~ 3 times/year where patients discussed with the pediatric and adult team

20. Example of “readiness for transition” checklist

21. Transition rounds : Review of patients & handover of transition file

22. Toronto transition program in CF
Transition summary written by pediatric MD, nurse, dietitian, SW, physiotherapist form the basis of adult centre chart
“Transition clinics” to introduce adult team
NP and MD attend clinic at pediatric hospital
Transition booklet for patients/families & transition information on website
Recognition at adult centre that true adulthood not reached until age > 24 yrs

23. Transition booklet and CF Clinic Website

24. Advice to Adult Caregivers
First date - make a good first impression
Don’t overwhelm at the beginning
Don’t criticize the pediatric team directly or indirectly
Inspire confidence
Being good is important, being trusted is essential
Learn about the individual patient – good communication of medical information from pediatric caregivers
Stress positives of transfer

25. “Don’t transfer patient if end stage disease”….
Prevent dignity of adulthood and making end of life decisions
May not predict “end stage” well (ie may live another 2- 5 years)
If not transferred, give message that they are different from peers and not worth transition as life too short

26. “Don’t transfer patient if psychosocial issues”
Sends message that transition is an option, not a part of life.
Do you say “Let’s delay John’s transfer to high school as his parents are going through a divorce”?
If not transferred, give message that they are different from peers
Careful and clear communication between teams and lots of support is what is needed

27. Apprehension NOT a reason to delay transfer

28. What can we improve ?
Increase opportunities for training of adult subspecialists in CF
fellowships
site visits to established centres
courses at conferences
Provide opportunities for health care team to learn about adolescent health and transitional care
workshops, courses at conferences, web learning
More efficient transfer of information
electronic medical records
Education of internists of coding strategies to improve reimbursement of time intensive cases

29. Summary of Key Points
Different models of care in pediatric vs adult settings
Transition of care to adult setting is standard of care in CF
Smooth transition possible if:
Pediatric care givers supportive
Interested and knowledgeable adult team
Transition program in place
PowerPoint tip:
Use an effective and strong closing. Your audience is likely to remember your last words.
Use a Summary of Key Points slide to: Summarize the main points of your presentation. Suggest future avenues of research.
Faculty Notes: At the end of your presentation, review key points you want the learner to remember from your presentation.
Review is key. Research, as in the Albert Mehrabian 1981 study, found that if people are exposed to an idea once, only 10% will remember it after 30 days. But for those people who are exposed to an idea six times with some interval between, over 90% will remember it after 30 days. Review is essential, but it’s not about what you cover; its about whether people grab onto it and can recall it later. If you say “let’s review,” you can be assured that three-quarters of the room is going to “check out.”
As an alterative, start out your presentation by asking learners to keep an “action/idea” list during your session. Stop every so often ,and ask the learners to review their list and come up with the the two most useful ideas, actions, or new information they want to learn more about. This exercise allows for more active participation and recall of relevant information.

30. Recommended Reading/Additional Resources
Reiss et al. Health care transition: Destinations unknown Pediatrics 2002;110:
McLaughlin et al. Improving transition from pediatric to adult CF care. Pediatrics 2008;121:e1160-e1166
Reiss et al. Health Care transition: Youth, family and provider perspectives. Pediatrics 2005;115:
Yankaskas et al. CF Adult Care: Consensus Conference Report Chest 2004;125:1S-39S
Flume et al. programs of transition in CF centres: Perceptions of pediatric and adult program directors Pediatric Pulmonology 2001;31:
Anderson et al. Transition programs in CF centres: Perceptions of patients. Pediatric Pulmonology 2002;33:
Faculty Notes: At the end of your presentation, it’s always a good idea to include any additional references or resources that your learners can use to gain more information about the topics you’ve just presented.
If you’ve referenced any key studies, or included Web links throughout your presentation, copying these into a centralized location at the end of your presentation serves as another form of review, as well as creates easy access for the learners to reference beyond the learning event.

31. Thank You
PowerPoint tip: End your presentation with a simple question slide to:
Invite your audience to ask questions.
Provide a visual aid during question period.
Avoid ending a presentation abruptly.