Neurodevelopmental outcomes: Gwen Alton RN MN

Report
Tetralogy of Fallot
Neurodevelopmental Outcomes
October 25, 2013
Tetralogy of Fallot
“Spelling It Out”
Gwen Alton RN, MN
Complex Pediatric Therapies Follow-Up Program
TOF population
Complex Pediatric Therapies Follow-Up
Program
– 1999-2008 registered the children with full repairs at
< 6 weeks
– 2008- register children with shunts prior to full repair
up to 6 months of age.
– 6 sites across western Canada
2
2000-2013
n= 51
CPB
(2000-2013)
n=42(82%)
Survival
to 2y
n=37(88%)
no
chrom Abn
n=28
*
Chrom Abn
n=9
*
shunt
(2008-2013)
n=9 (18%)
Deaths
to 2y
n=5(12%)
No
Chrom Abn
n=2
**
Chrom Abn
n=3
Survival
to 2y
n= 7(78%)
No
Chrom Abn
n=3
Chrom Abn
n=4
Deaths
to 2y
n=2(22%)
No
Chrom Abn
n=0
Total survivors = 44 no chrom abn = 31 Chrom Abn =13 *ECMO
Chrom Abn
n=2
Acute Care Variables mean (sd); n(%)n= 51
Variables
CPB n= 42 BT n=9
Age (d)
Ventilator days
Hospital days
Sepsis
Convulsions
CPR anytime
No significant difference between groups
39(36)
19(38)
36(30)
2(5%)
4(10%)
2(5%)
31(28)
9(8)
26(16)
1(11%)
0(0%)
1(11%)
Acute care variables mean(sd)
Variables
n=51
CPB n= 42 BT n=9
PO d1 inotrope score
17(12)
11(9)
PO d1 lactate (highest)
4(4)
2(1)
PO d2-5 inotrope score
16(8)
20(23)
PO d2-5 lactate (highest)
3(1)
3(4)
No significant difference between groups
Acute care variables mean(sd); n(%)
n=51
No Chr Abn n=33
Chr Abn n=18
Age (d) at OR
40(37)
34(29)
Ventilator days
Hospital days
11(12)
30(22)
29(55)
43(36)
Sepsis
Convulsions
CPR anytime
2(6%)
1(3%)
2(6%)
1(6%)
3(17%)
1(6%)
30(91%)
12(67%)
Variables
CPB*
* p= .052 – trend to significance
Acute care variables mean(sd); n=51
Variables
CPB n=30
X-clamp n=29
PO d1 inotrope score
No Chr Abn n=33 Chr Abn n=18
114(49)
56(26)
16(11)
139(59)
64(23)
16(13)
PO d1 lactate (highest)
4(4)
3(2)
PO d2-5 inotrope score
16(9)
19(16)
PO d2-5 lactate (highest)
2(2)
3(3)
No significance difference between groups
Developmental Examination
Complex Pediatric Therapies Follow-Up Program
•
•
•
•
•
General health
Vision
Hearing
Language – expressive
Language
comprehension
• Performance skills
• Gross motor
•
•
•
•
•
•
•
•
Fine Motor
Behavior
Social interaction
Intellect
Environment
Functional Behavior
Quality of Life
Nutrition
Multisite assessments
Multidisciplinary teams
8
Over view Outcomes n=44
Survivors
n= 44
4 year
n=14
2 year
n= 21
Not yet seen
n=7
LOST
n=2
9
Disabilities + General Health– n=35
• Motor:
Cerebral Palsy n=2(6%)
• Sensory: Vision loss n=1 (with CP)
Hearing loss n=1
(2.8%)(unilateral, not aided)
• G-tube at 2 year assessment n=9 (5 with Chrom Abn)
• At 4 year assessment n=3 (2 with Chrom Abn)
• Hospitalizations # 3-9 in first 2 years (non-cardiac)
10
Growth at 2 years: n (%) n=31
Anthropometrics
Length < 3%
Weight < 3%
HC below -2SD
No chrom n=23
Chrom abn n=8
5(22%)
5(22%)
3(13%)
2(25%)
2(25%)
3(37%)
11
Outcomes at 2 and 4 years n=35
Outcome
No chrom abn
combined 4y + 2 y
n=25
Chrom abn
n=10
Mean(sd)
Cognitive
GAC (ABAS)
81.8(17.2)
69.3(20)
78(17)
68(17)
GAC-General Adaptive Composite; ABAS - Adaptive Behavioral Assessment System
No significant difference between groups
No difference between CPB/BT group
12
TOF – outcomes n=35
Outcome
No chrom abn/
Congenital
n=18
84(17)
Chrom abn/
Congenital *
n=17
72(19)
GAC(ABAS)
81(18)
69(16)
Quality of Life
85(18)
69(12)
combined 4y + 2 y
Mean(sd)
Cognitive
* Skeletal dysplasia, VACTERL, neuroblastoma, dysmorphic
13
Cognitive outcome– n=35
100
80
%
60
no chrom n=25
Chrom n=10
40
20
0
<70
70-84
85-114
115+
14
DEFINITION: Adaptive/Functional
• Level to which individuals meet standards of
personal self-determination and social
conscientiousness that is expected for their age,
development and culture.
• Includes real life skills such as grooming, dressing,
safety, cleaning, making friends, social skills
• Used in evaluation of children to determine
strengths and weaknesses to help improve their
success in school and life
15
GAC – Functional outcome
100
80
%
60
no chrom n=25
chrom n=10
40
20
0
<70
70-84
85-114
115
16
ABAS II Profile of Function
COMPOSITE DOMAINS
10 SKILL AREAS
Motor
CONCEPTUAL
Communication
Functional Pre/Academics
Self-Direction
SOCIAL
Leisure
Social
PRACTICAL
Community Use
Home Living
Health and Safety
Self-Care
General Adaptive Composite Score (GAC) includes all 10 domains 17
Co com
m
m
m
un
ity
pr
e
Ho
Ac
m
a
He eL d
iv
al
in
th
&S g
af
et
Le y
is
Se ure
Se
lf
C
lf
Di are
re
ct
io
n
So
ci
al
M
ot
or
Skill area differences at 2 yr, m(SD)
10
9
8
7
6
5
4
3
2
1
0
no chrom n=25
chrom n=10
NO CC n=13
18
Early Developmental Intervention
0-3 years - is family centered
Target groups:
1. Established impairment – e.g. Down
Syndrome, Autism Spectrum Disorder
2. Environmental risk – e.g. poverty
3. Biological risk – e.g. early or ongoing
illness
Availability:
-parent requests - community
-referral to tertiary level
19
Early Developmental Intervention
Benefit – influences child, parent, family and
reduces future concerns
Child Outcomes - social competence
- emotional development
- behavioral engagement
- motivation
Parent Outcomes - resources, advocacy skills
20
What can parents do to provide
early assistance to their child?
– Read, sing, tell stories
– Watch and listen to see how your child
communicates
– Encourage your child to explore
– Use words to help your child understand their
feelings
– Give your child the chance to do things for
themselves – encourage to keep trying
Zero to Three – Early Learning
21
Thank you
• All the families and children who have
participated – Complex Pediatric
Therapies Follow-Up Program
• Other sites across Western Canada
• NICU, PICU, surgical staff – Stollery
Children’s Hospital
• 4C staff & therapists – Stollery Children’s
Hospital
• Glenrose Rehabilitation Hospital –
therapist and support staff
• Co-chairs – Dr. Charlene Robertson,
Dr. Ari Joffe, Dr. Reg Sauvé
22
QUESTIONS
23

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