Download You Say Good-Bye and I say Hello: Transitoning the Adolescent

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!!
Nurse
Coordinator
Resp MD
Social Worker
Physiotherapist
Psychologist
Respiratory Therapist
Educator
Dietician
Pharmacist
Community
Generalist
Subspecialty MD’s
Percent
Bones in CF/Les Os dans la FKP
100
90
80
70
60
50
40
30
20
10
0
BMI>10%
Mean FEV
Low Vit D
Low Vit K
High UOC
Grey et al, Pediatrics, 122:1014-20, 2008
Bones in CF/Les Os dans la FKP
40
35
Percentage
30
25
20
15
10
5
0
Low WBBMC z-score
Low LSBMD z-score
Grey et al, Pediatrics, 122:1014-20, 2008
The Benefits of Physical Activity/Les Bénéfices d’Activité Physique
1.5
1
0.5
0
-0.5
-1
-1.5
-2
-2.5
-3
-3.5
Rate of Decline of FEV1 in Low and High Activity Groups
86
84
Rate of Decline of FEV1
Annual Rate of Change of
FEV1 (%)
Hebestreit et al, ERJ, 2006
1st Qtr
2nd Qtr
3rd Qtr
4th Qtr
82
80
78
76
74
LOW
HIGH
72
70
0
Time (years)
Habiltual Activities Quartiles
Schneiderman-Walker et al, J Pediatr 2005; Wilkes et al, Ped Pulmonol 2007
6
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
LZSCORE
Poster 647 NACF 2008 Wilkes et al.
3
2
1
0
-1
-2
-3
LOW
HIGH
0
Time (years)
6
CF-related Diabetes
Moran et al, Diabetes Care, 2009
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
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
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
Nixon et al, Arch Dis Child, 2003
On-line Survey
64 patients age 13-42 years
64% female
Who they preferred to talk to:
Females:
CF provider 43%
Gynecologist 32%
Males:
Parents
22%
Parents
30%
CF provider 26%
Tuchman et al, Int J Sex Health, 2010
Summary
• Significant progress in CF longevity
• Preventative strategies for long term wellbeing
• Progressive empowerment and
responsibilities
• Transition is a process