you say good-bye and i say hello: transitioning the adolescent patient to adult care larry c. lands,...
TRANSCRIPT
You Say Good-Bye and I Say Hello: Transitioning the
Adolescent Patient to Adult CareLarry C. Lands, MD, PhD
Professor of Pediatrics, McGill UniversityDirector, Respiratory Medicine and Cystic Fibrosis Clinic, Mtl Children’s
HospitalMember, 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 MDNurse Coordinator
Physiotherapist
Respiratory Therapist
Social Worker
Dietician
Pharmacist
Educator
Community Generalist
Subspecialty MD’s
Psychologist
Bones in CF/Les Os dans la FKP
0102030405060708090
100
Per
cent
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
0
5
10
15
20
25
30
35
40
Per
cen
tag
e
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
-3.5-3
-2.5-2
-1.5-1
-0.50
0.51
1.5
Ann
ual R
ate
of C
hang
e of
F
EV
1 (%
)
1st Qtr 2nd Qtr 3rd Qtr 4th Qtr
Habiltual Activities Quartiles
Rate of Decline of FEV1 in Low and High Activity Groups
70
72
74
76
78
80
82
84
86
0 6Time (years)
Rat
e of
Dec
line
of F
EV
1
LOW
HIGH
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.
-3
-2
-1
0
1
2
3
0 6Time (years)
LZS
CO
RE
LOWHIGH
Moran et al, Diabetes Care, 2009
CF-related Diabetes
DefinitionHealth 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 TransitionBegins 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
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 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
Summary
• Significant progress in CF longevity
• Preventative strategies for long term well-being
• Progressive empowerment and responsibilities
• Transition is a process