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

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.”

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

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.

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.

What does transition really mean?

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.

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

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

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

Transition can be challenging

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

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

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

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

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

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

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

Toronto transition program in CF ~ 15-20 adolescents transfer to adult CF centre/yr Transition starts at time of diagnosis with gradual shift of responsibility from parents to child Transfer at 17-18 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

Example of “readiness for transition” checklist

Transition rounds : Review of patients & handover of transition file

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

Transition booklet and CF Clinic Website http://torontoadultcf.com

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

“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

“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

Apprehension NOT a reason to delay transfer

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

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.

Recommended Reading/Additional Resources Reiss et al. Health care transition: Destinations unknown. Pediatrics 2002;110:1307-1314 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;115:112-120 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;31:443-450 Anderson et al. Transition programs in CF centres: Perceptions of patients. Pediatric Pulmonology 2002;33:327-331 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.

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.