You say goodbye and I say hello: Transition from pediatric to adult care

1. 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 • Gilead • Vertex

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

4. Transition is a process Transfer is the moment of change

5. Life is a transition Many transfer moments Start high school Start college/university First job Move away from home

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

8. Models of Care • Pediatric 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

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 • Fear of unknown • Reluctant to leave team that “kept child well”

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

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

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

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 • ~ 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

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 http://torontoadultcf.com

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

30. 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

31. Thank You