1. Stacee Lerret PhD, RN, CPNP, CCTC Medical College of Wisconsin Children’s Hospital of Wisconsin WI ITNS Annual Conference October 13, 2012 MOVING ON UP: PEDIATRIC TO ADULT TRANSITION

2. FINANCIAL DISCLOSURE None to report

3. Review current state of transition in solid organ transplant and other chronic illness populations. Identify obstacles to a successful transition process for solid organ transplant recipients. I dentify transition practices and resources currently used at transplant centers. OBJECTIVES

4. Growing number of children with complex health conditions Transfer from pediatric to adult facility is another milestone MILESTONES

5.  Definition  “Purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child- centered to adult-oriented health care systems”.  Blum et al., 1993 INTRODUCTION

6. Transition Active process that addresses needs of adolescents as they prepare to move from child to adult centered health care Medical Psychosocial Educational/Vocational Transfer Physical change in location where care is provided DEFINITIONS Blum et al., 1993; Sawyer et al., 1997

7.  Literature  Solid organ transplant  Human immunodeficiency virus  Cystic fibrosis  Diabetes  Other chronic illness populations  National practice and research priority TRANSITION LITERATURE

8. TRANSITION LITERATURE: CONSENSUS STATEMENTS

9. Formal framework for enabling the seamless transition of transplant patients for all healthcare providers to follow. Age of transfer is individualized and transfer takes place during the transition process age range 14-24 years. Every patient should be offered the opportunity of participating in a young adult clinic.Pediatric and adult centers should identify a clinical lead.Process of consultation with patients and families to ensure all needs are met. During transfer patients should have access to support service tailored to their specific needs in the adult center. Performance standards are defined and monitored to ensure all patients receive similar service. TRANSITION LITERATURE: CONSENSUS STATEMENTS

10.  35 pediatric and 24 adult liver transplant coordinators  Results highlight important role of communication and partnership between pediatric and adult programs TRANSITION: COORDINATOR PERSPECTIVE

11.  Despite literature and momentum to improve transition process limitations exist  Overall lack of consistency in healthcare and support services provided to young adults and their families  Insufficiencies may be related to adverse outcomes  Acute rejection  Graft loss TRANSITION LITERATURE CONT.

12. PatientFamily Pediatric Team Adult Team Hospital Systems OBSTACLES TO SUCCESSFUL TRANSITION

13. Education at an early age Foster responsibility and autonomy Individualized to development and acuity Address fear and anxiety Patient Encourage inclusion of child at an early age Provide suggestions for enhancing independence Include in process of choosing adult provider Family OVERCOMING TRANSITION OBSTACLES

14. Promote age appropriate responsibilities Coordinate and communicate with adult center Pediatric Team Coordinate and communicate with adult center Increase frequency of clinic appointments after transfer Encourage adult primary care provider Adult Team Transition policy Support for dedicated individuals focusing on transition Utilize experts for financial and insurance issues Timing of transfer (age) Systems OVERCOMING TRANSITION OBSTACLES

15. NOW WHAT?

16. One visit Adult MD or RN meeting family at pediatric facility Alternating visits Pediatric and adult facility Shared clinic Clinic staffed by pediatric and adult transplant team members TRANSITION CLINICS

17. TRANSITION RESOURCES American Society of Transplantation

18.  National Health Care Transition Center  http://www.gottransition.org/ http://www.gottransition.org/  Got Transition  Partnership  National Alliance to Advance Adolescent Health  American Academy of Pediatrics  Target  Health care professionals  Families  Youth  Health policy makers  Content  Transition tools and tips RESOURCES: GOT TRANSITION

19. RESOURCES: GOT TRANSITION CONT.

20. TRANSITION RESOURCES The Hospital for Sick Children, Toronto http://www.sickkids.ca/Good2Go/

21. TRANSITION RESOURCES “GOOD 2 GO” http://www.sickkids.ca/Good2Go/

22. TRANSITION RESOURCES “GOOD 2 GO” http://www.sickkids.ca/Good2Go/

23. TRANSITION RESOURCES “GOOD 2 GO” http://www.sickkids.ca/Good2Go/

24. TRANSITION RESOURCES “GOOD 2 GO” http://www.sickkids.ca/Good2Go/

25. TRANSITION RESOURCES: READINESS CHECKLIST Sawicki, 2011

26. TRANSITION RESOURCES: READINESS SURVEY Fredericks et al., 2010

27.  Important transplant and chronic illness issue  Goal to maximize health and quality of life  Live as independent and self sufficient adults  Literature regarding transition  Currently have single center experiences published in literature  More rigorous research  Limitations remain  Guide or framework  Checklists built into electronic medical record  National efforts  Consensus group  Transition workgroups CONCLUSION

29. Discussion and Questions