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

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

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

Bones in CF/Les Os dans la FKP Grey et al, Pediatrics, 122: , 2008

Bones in CF/Les Os dans la FKP Grey et al, Pediatrics, 122: , 2008

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

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.

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

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

Hink and Shellhase, JSPN, 2006 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 team reluctance to let go

McLaughlin et al, Pediatrics, 2008

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

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

Male Infertility Frayman et al, Pediatr Pulmonol, 2008

Male Infertility Frayman et al, Pediatr Pulmonol, 2008

Nixon et al, Arch Dis Child, 2003

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

On-line Survey 64 patients age years 64% female Who they preferred to talk to: Females:CF provider43% Gynecologist32% Parents22% Males:Parents30% CF provider26% Tuchman et al, Int J Sex Health, 2010

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