Preterm and High Risk Infants - Assessment, Time Scales ... · Preterm and High Risk Infants - Assessment, Time Scales & Interventions: a neurodevelopmental follow up programme for

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