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Preterm and High Risk Infants -
Assessment, Time Scales & Interventions: a neurodevelopmental follow up programme for children
at high risk of developmental problems
Betty Hutchon
Consultant Neurodevelopmental Therapist
North Central London Perinatal Network
Head Occupational Therapist (Paediatrics) Royal Free Hospital.
Honorary Lecturer, Institute of Child Health
University College London (UCL)
AIM
Establish a framework to enable neurodevelopmental follow up to be performed in all North Central London Network infants born at < 30 weeks gestation or < 1000grams and other high risk infants – HIE, seizures, neonatal stroke etc
To provide anticipatory guidance
To ensure early intervention
To provide data for planning service provision and to assist the neonatal units
To provide data for research studies including TRPG/SEND outcomes groups
Expected outcomes of the follow up
programme
Co-ordinated programme across several hospitals in our network
Systematic, standardised and reliable programme
Results on a database for further study and reported nationally
Results also reported in writing to all those involved in the care of the child and the parents
Outcome data would be used to:
Facilitate benchmarking within a population based group
Improve clinical care
Facilitate research
Improved parent and family satisfaction in the community setting
Why Who What
?
High risk preterm and
term babies
Babies with high risk of neurodevelopment problems
because of biological disadvantage
Babies <30/40
Babies <1000 grams
Term infants with
HIE
Other neurology
or abnormal
MRI
Why Who What
?
Aim:
To provide a high quality , standardised, equitable and accessible local service
To improve long term outcome of survivors of NICU at high risk of developmental problems
Provision of neurodevelopmental follow-up for at least 2 years corrected forms part of national recommendations for neonatal services - BAPM
Infants born preterm are at greater risk for developmental impairments than term peers
‘High prevalence low severity’
impairments
Rates of major disability have remained relatively constant whilst prevalence of milder dysfunctions increasing
Cognitive, behavioural and mild motor problems without major deficits are now the most dominant neurodevelopmental sequelae in children born preterm
Learning problems
Borderline to low IQ score
Attention deficit
Specific neuropsychologi
cal deficits affecting
visuomotor integration and
executive function
They occur in > 50% of
preterms with VLBW and
are often not in isolation
Include
Pathogenesis largely
unclear but includes
Lower gestational age Brain lesions such as
IVH
Periventricular haemorrhagic
infarction
PVL
Developmental disruptions include
diffuse white matter injury
EPICure study at 11 years
(followed up 307 extremely preterm children born in the United Kingdom and
Ireland at 1 year, 2.5 years, 6-8 years, and 10-11)
Extremely preterm survivors
remain at high risk for
learning impairments
and poor academic
achievement at school age
EPICure study at 11 years
(followed up 307 extremely preterm children born in the United Kingdom and
Ireland at 1 year, 2.5 years, 6-8 years, and 10-11)
Extremely preterm survivors
remain at high risk for
learning impairments
and poor academic
achievement at school
age
Significant proportion require full
time specialist
education
EPICure study at 11 years
(followed up 307 extremely preterm children born in the United Kingdom and
Ireland at 1 year, 2.5 years, 6-8 years, and 10-11)
Extremely preterm survivors
remain at high risk for
learning impairments
and poor academic
achievement at school
age
Significant proportion require full
time specialist
education
Over half of those who
attend mainstream
require additional health or
educational resources to access the
national curriculum
EPICure study at 11 years
(followed up 307 extremely preterm children born in the United Kingdom and
Ireland at 1 year, 2.5 years, 6-8 years, and 10-11)
Extremely preterm survivors
remain at high risk for
learning impairments
and poor academic
achievement at school age
Significant proportion require full
time specialist education
Over half of those who
attend mainstream
require additional health or
educational resources to access the
national curriculum
Prevalence and impact
of SEN likely to increase as
children approach
transition to secondary
school
Psychiatric Disorders in EPC:
Longitudinal Finding at age 11 years in
EPICure Study
EPC are > than 3 times more likely to have a psychiatric disorder than classmates 23% v 9%
Ref: Journal of the American Academy of Child and Adolescent Psychiatry April 2010
Psychiatric Disorders in EPC:
Longitudinal Finding at age 11 years in
EPICure Study
EPC are > than 3 times more likely to have a psychiatric disorder than classmates 23% v 9%
ADHD 11% v 2%
Ref: Journal of the American Academy of Child and Adolescent Psychiatry April 2010
Psychiatric Disorders in EPC:
Longitudinal Finding at age 11 years in
EPICure Study
EPC are > than 3 times more likely to have a psychiatric disorder than classmates 23% v 9%
ADHD 11% v 2%
Emotional disorders 9% v 2%
Ref: Journal of the American Academy of Child and Adolescent Psychiatry April 2010
Psychiatric Disorders in EPC:
Longitudinal Finding at age 11 years in
EPICure Study
EPC are > than 3 times more likely to have a psychiatric disorder than classmates 23% v 9%
ADHD 11% v 2%
Emotional disorders 9% v 2%
ASD 8% v 0%
Ref: Journal of the American Academy of Child and Adolescent Psychiatry April 2010
Psychiatric Disorders in EPC:
Longitudinal Finding at age 11 years in
EPICure Study
EPC are > than 3 times more likely to have a psychiatric disorder than classmates 23% v 9%
ADHD 11% v 2%
Emotional disorders 9% v 2%
ASD 8% v 0%
Psychiatric disorders were significantly associated with cognitive impairment
Ref: Journal of the American Academy of Child and Adolescent Psychiatry April 2010
EPICure study
After adjustment for IQ, studies have highlighted persistent problems with maths, oral-motor skills, verbal working memory and perceptual-motor and spatial-organisational difficulties.
This pattern of problems thought to be indicative of a disruption to global brain development
Imaging studies provide confirmatory evidence of reduced cortical volume, size and complexity in preterm populations.
Language and reading difficulties can be accounted for by general cognitive impairment
Specific deficits in maths may be a result of more specific impairment of regional brain areas
Maths abilities related to
Working memory
Executive function
Attentional control
Perceptual and visuo-spatial skills
All of which can be selectively impaired in preterm infants
Implications for intervention
Motor development plays an integral role in perceptional and cognitive development.
Research suggests that interventions targeted at:
Motor control
Executive functioning
Behavioural and emotional problems
may improve educational outcomes
Why Who What
?
The goals of Follow-up
Promote child health and well being
Enhance emerging competencies
Minimize developmental delays
Remediate existing or emerging disabilities
Prevent functional deterioration
To provide education & support to enhance family’s care giving skills & maximise infants developmental potential
Purpose of Follow-up
Purpose of Follow-up
Opportunity to provide reassurance for families
Purpose of Follow-up
Teach about development
Purpose of Follow-up
Link families to other community based services when appropriate
•promote confident parenting and overall family functioning through the use of anticipatory guidance
Parent-infant
interaction
Various studies have indicated that more responsive, positive, warm
and sensitive parenting is associated with better developmental
outcome
Koldewijn et al showed
Infants who had received early intervention that paid specific attention to the infants self regulation and sensitive parent-infant interactions had a significantly better motor outcome at the age of 2 years.
Anticipatory Guidance what is it?
“Provision of information to parents with the expected outcome being a change in parent attitude, knowledge or behaviour”
(Telzrow)
Anticipatory Guidance what is it?
“Provision of information to parents with the expected outcome being a change in parent attitude, knowledge or behaviour”
(Telzrow)
Mechanism for strengthening a child’s developmental potential
(Brazelton 1975)
Anticipatory guidance
Helping parents obtain information to promote optimal development of their child
Anticipatory guidance
Helping parents obtain information to promote optimal development of their child
Using assessment information to help families better understand the challenges to a child’s development
Anticipatory guidance
Helping parents obtain information to promote optimal development of their child
Using assessment information to help families better understand the challenges to a child’s development
Assessment becomes a relationship building tool
Child is assessed in
following areas:
• Development
• Neurology
• Behaviour
Early intervention need to be
holistic and include
Cognitive and play
development
Communication Fine Motor Gross Motor
Social Emotional development
Attention and
concentration
Self regulatory
skills
General movements
Behaviour Muscle
tone Asymmetries
Early intervention need to be
holistic and include
Key ages for Assessments and
for Interventions
TERM AGE 3 MONTHS 6 MONTHS
12 MONTHS
24 MONTHS
Corrected Age
Assessments used which
facilitate Interventions
TERM AGE
• NBAS
• Prechtl GM
3 MONTHS
• Bayley
• Prechtl GM
6 MONTHS
• Bayley
• neuro
12 MONTHS
• Bayley Hammersmith neuro
24 MONTHS
• Bayley
• Hammersmith neuro
All stages use anticipatory guidance and Parental coaching
Term age
Brazelton scale
NBAS
Prechtl neurological assessment
video of general
movements
Brazelton Neonatal
Behavioural Assessment Scale
Assesses the strengths and abilities of the baby and provides information on the baby’s self-regulatory behaviours
Looks at baby’s states, habituation and ability to self soothe
It is a tool for sharing information on the baby’s behaviours with parents
Helps sensitise parents to the behavioural abilities of their baby
Facilitates recommendations for interventions and caregiving
Prechtl Assessment of
General Movements
Highly reliable neurological assessment
Many studies - 98% reliable in predicting neurological impairment
Video baby when awake and happy
Non-intrusive/Parent friendly
Can be used from 28 weeks gestation to 5 months post term age.
Facilitates recommendations for interventions and caregiving
GM session
Term age
Advice regarding positioning and head
shape
Stimulation and
appropriate play
Advice to parents
regarding crying and
sleep
Hands on play /
contact for bonding
3 months
Bayley Scales of Infant and Toddler Development III
Prechtl GM assessment
Prechtl at 3 months: fidgety
age!
Bayley Scales of Infant and
Toddler Development
Assesses the developmental functioning of babies between 1 month and 42 months of age
• Cognition
• Language
• Fine and Gross Motor Skills
Identifies children with developmental delay in:
• Social Emotional Parent Questionnaire
• Adaptive Behaviour Parent Questionnaire.
Also Includes
Facilitates recommendations for interventions and caregiving
Bayley Scales of
Infant Development – Bayley III
Gold standard of all developmental assessments - used in all major research
Used in detailed developmental follow-up
Easy to use to provide anticipatory guidance and parental coaching
Cognitive Scale
91 items that assess
•Sensorimotor development
•Exploration and manipulation
•Object relatedness
•Concept formation
•Memory
Receptive Communication
49 items that assess
preverbal behaviors
vocabulary development
as being able to identify
objects & pictures that are
referenced
vocabulary related to
morphological development
such as pronouns and prepositions
understanding of morphological
markers
such as plural -s, tense markings (-ing, -ed), and
the possessive -’s
items that measure children’s social
referencing & verbal comprehension
Expressive Communication
48 items that assess
preverbal communication,
such as:
babbling, gesturing
joint referencing, & turn taking
Vocabulary development,
such as:
naming objects, pictures,
naming attributes (e.g., color and
size)
morpho-syntactic development,
such as:
using two-word utterances
plurals, and verb tense
Fine Motor
Comprised of 66 items
• prehension
• perceptual-motor integration
• motor planning and speed
• visual tracking
• responses to tactile information
• Reaching
• object grasping
• object manipulation
• functional hand skills
Comprised of 72 items
•Movement of the limbs and torso
•Static positioning (e.g., sitting, standing)
•Dynamic movement, including locomotion & coordination
•Balance
•Motor planning
Gross Motor
Social-Emotional Scale
Is Greenspan Social-Emotional Growth Chart with scaled scores, assesses
• self-regulation and interest in the world
• communicating needs
• engaging others and establishing relationships
• using emotions in an interactive purposeful manner
• using emotional signals or gestures to solve problems
Adaptive Behavior Scale
Caregiver information from
•Adaptive Behavior Assessment System-Second Edition
Skill areas include
•communication
•health & safety
•community use
•leisure
•self-care
•self-direction
•pre-academics
•home living
•social
•motor
The scores for all skill areas combine to form the
General Adaptive Composite (GAC), an overall measure of the
child’s adaptive development
Test Scores
Scaled Scores
Composite Scores
Percentile Ranks
Developmental Age Equivalents
Growth Scores
Cognitive Growth Chart
250
275
300
325
350
375
400
425
450
475
500
525
550
575
600
0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19
Age in Months
Gro
wth
Sc
ore
5
10
25
50
75
90
95
Focus on
Visual behaviour to include smiling and interaction
Motor behaviour to include hands to midline, hands to knees, head control and head in
midline, posture in prone
Regulatory behaviours
At 3 months
6 months
This is a key time for the
development of sitting balance, postural
control and fine motor
skills
Its now possible to see babies who may
need some extra input in these areas
Play and interaction
How does the baby manage
sitting balance
How does the baby reach
out when held in sitting
Rolling
6 months
Toys to mouth Banging toys
Visual attention and the emergence of focussing on small
pictures
Use of books in play
12 months
Moves in and out of sitting
Crawling versus ‘bottom shuffler’
Pulls to stand and cruises
Pointing, pincer grasp and
equal use of both hands
Self feeding
12 months
Responsive to verbal commands
and lots of babbling and vocalisations
Claps hands and waves ‘bye bye’ on
command
24 months
Complex cognitive skills involving memory, shape
recognition, relational and imaginative play,
attention, concentration and behaviour
Self help skills
Pre-writing and pencil skills, hand
preference
24 months
Walking Running Climbing
Throwing and kicking
Manages stairs safely
24 months
Communication Interaction
Eye contact Social behaviour
Basic Principles of
interventions
Use anticipatory guidance
Coach parents to integrate motor activities into daily routines
Help infant to successfully experience a wide variety of sensory motor activities to learn and develop with the ‘just right’ challenge in mind
Provide the opportunity for play and progression in a variety of positions – avoid overuse of static ‘positioning
Coach parents – not just 45 minute therapist led therapy session
Early intervention for optimal outcomes with cognitive, motor and social emotional disorders
Support to Parents
Use anticipatory guidance to advise on suitable seating, baby walkers, TV, playing alone for long periods on mobile devices, etc
Positive feedback identifying all achievements no matter how small
Normalise parental role
(toys, clothes, shoes, car seat, high chair)
Excitement over “firsts”
(rolling, sitting, hands to feet, clapping)
Developmental Goals
Progress developmental milestones
(gross/fine motor, cognitive, social, language)
Monitor and assess tone
Age appropriate play activities
Follow-up Precautions
Majority of VLBW infants do not have CP.
Neuromotor development of preterm infant is different than that of a full term infant.
Infant test scores are not necessarily predictive but socioeconomic status is a powerful predictor.
Developmental outcomes change over time – sometimes for better and sometimes for worse
Families may not be ready to acknowledge the problems you see
Evidence for intervention:
Evidence on neural plasticity shows the developing brain is capable of being modified by both deleterious (e.g. early stress) and beneficial (e.g. enriched environments) experiences.
Sound neurophysiological basis for early intervention
Research has shown that reorganisation of an injured motor cortex is possible through therapeutic activities