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

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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 Childrens Hospital
• Member, Quebec Lung Transplant Program, Hôpital
  Notre Dame-CHUM
• Member, Cystic Fibrosis Clinics, Hôpital
  Rouyn-Noranda, Hôtel Dieu-CHUM

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Disclosures
I have no conflicts of interest to
declare WARNING Certain material covered in this
presentation may make some respirologists
uncomfortable-Dont squirm!!
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Nurse Coordinator
Resp MD
Social Worker
Physiotherapist
Psychologist
Respiratory Therapist
Educator
Dietician
Pharmacist
Community Generalist
Subspecialty MDs
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Bones in CF/Les Os dans la FKP
Grey et al, Pediatrics, 1221014-20, 2008
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Bones in CF/Les Os dans la FKP
Grey et al, Pediatrics, 1221014-20, 2008
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The Benefits of Physical Activity/Les Bénéfices
dActivité Physique
Hebestreit et al, ERJ, 2006
Schneiderman-Walker et al, J Pediatr 2005 Wilkes
et al, Ped Pulmonol 2007
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Habitual Physical Activity and Bone Mineral
Density/LActivité 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.
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CF-related Diabetes
Moran et al, Diabetes Care, 2009
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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
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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
Hink and Shellhase, JSPN, 2006
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McLaughlin et al, Pediatrics, 2008
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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
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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
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Male Infertility
Frayman et al, Pediatr Pulmonol, 2008
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Male Infertility
Frayman et al, Pediatr Pulmonol, 2008
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Nixon et al, Arch Dis Child, 2003
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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
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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
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Summary

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