You Say Good-Bye and I Say Hello: Transitioning the Adolescent Patient to Adult Care

1. You Say Good-Bye and I Say Hello: Transitioning the Adolescent Patient to Adult Care Larry C. Lands, MD, PhD Professor of Pediatrics, McGill University Director, Respiratory Medicine and Cystic Fibrosis Clinic, Mtl Children’s Hospital Member, Quebec Lung Transplant Program, Hôpital Notre Dame-CHUM Member, Cystic Fibrosis Clinics, Hôpital Rouyn-Noranda, Hôtel Dieu-CHUM

2. Disclosures I have no conflicts of interest to declare WARNING: Certain material covered in this presentation may make some respirologists uncomfortable-Don’t squirm!!

7. Nurse Coordinator Resp MD Social Worker Physiotherapist Psychologist Respiratory Therapist Educator Dietician Pharmacist Community Generalist Subspecialty MD’s

9. Bones in CF/Les Os dans la FKP Grey et al, Pediatrics, 122:1014-20, 2008

10. Bones in CF/Les Os dans la FKP Grey et al, Pediatrics, 122:1014-20, 2008

11. The Benefits of Physical Activity/Les Bénéfices d’Activité Physique Hebestreit et al, ERJ, 2006 Schneiderman-Walker et al, J Pediatr 2005; Wilkes et al, Ped Pulmonol 2007

12. Habitual Physical Activity and Bone Mineral Density/L’Activité physique et la masses osseuse Dexa BMD over time in children and adults in relation to habitual physical activity Poster 647 NACF 2008 Wilkes et al.

13. CF-related Diabetes Moran et al, Diabetes Care, 2009

14. Definition Health care 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 Transition readiness: The capacity of the adolescent and those in his or her primary medical system of support (family and medical providers) to prepare for, begin, continue and finish the transition process Transfer: A discrete event Blum et al, J Adolesc Health, 1993 Tuchman et al, Pediatrics, 2010

15. Family Centred Transition Begins at diagnosis; Family functioning and coping have short and long term health impacts Family concerns:relinquishing control over care and being excluded from decision-making Adolescent development issues:increased need for privacy, control and peer acceptance, sense of invulnerability, chronic disease increase risk for unnecessary dependency, developmental difficulties, psychosocial delay Common adolescent concerns:growth and development, sexuality, mood and mental health disorders, substance abuse, health promoting and damaging behaviours Pediatric health teamreluctance to let go Hink and Shellhase, JSPN, 2006

16. McLaughlin et al, Pediatrics, 2008

17. Patient Preparation • Involvement of family • Discussion of transition process • Develop a timeline • Help patient establish health goals • Ensure patient understanding of process • Develop transition process between centres: who, what, where McLaughlin et al, Pediatrics, 2008

18. Patient Readiness • Knows medications and their function • Performs chest physical therapy • Knows when to seek medical help • Independently contacts healthcare team • Attends clinic independently • Understands medication insurance coverage and other benefits/entitlements McLaughlin et al, Pediatrics, 2008

20. Male Infertility Frayman et al, Pediatr Pulmonol, 2008

21. Male Infertility Frayman et al, Pediatr Pulmonol, 2008

22. Nixon et al, Arch Dis Child, 2003

23. 87% of adolescent girls and 78% of parents had never discussed these issues with CF doctor Sexual health discussions should begin at age: girls: 13.2 years parents: 12.2 years mothers: 9.4 years Nixon et al, Arch Dis Child, 2003

24. On-line Survey 64 patients age 13-42 years 64% female Who they preferred to talk to: Females: CF provider 43% Gynecologist 32% Parents 22% Males: Parents 30% CF provider 26% Tuchman et al, Int J Sex Health, 2010

25. Summary • Significant progress in CF longevity • Preventative strategies for long term well-being • Progressive empowerment and responsibilities • Transition is a process