Cognitive monitoring of children with CP:

Background, aim and rationale of the proposed Nordic assessment protocol

Pre-conference symposium

EACD 2013 NewcastleTorhild Berntsen

Background

• The increased acceptance of cognitive impairments as a central part of the cp-diagnosis many invitations to lecture about cognition, cognitive problems and their remediation in conferences that usually gather physiotherapists, orthopedic personel, occupational therapists and other non-psychologists

• The users’ organisation (CP-foreningen), was most crucial – they wanted to contribute to a more systematic follow-up of cognition in the CP group– Anchored in the co-operating Nordic users’ organizations

Background (cont.)• Professional interest

– CPOP – a national (health) quality registry in Norway –

monitoring the physical development of children with CP

– CPUP – the same in Sweden, the pioneers who started montioring the child with cp’s motoric development

– CPRN – a Norwegian national database combining medical information, some cognitive, and language infomation on all children diagnosed with CP

– HabQ – a Swedish habilitation registry (next lecture)

– In Denmark: both the University of Copenhagen and Spastikerforeningen by the psychologists working there

• I.e. enthusiastic professional involvement and support

Background (cont.)

• The wheels began turning

– The users’ organisations in Island, Denmark, Sweden and Norway invited the professionals of CPOP/CPUP and a neuropsychologist to a broader discussion in Bergen in the fall of 2011

– Invited to a joint Nordic meeting in Lund University Hospital in the spring of 2012: participation of professionals from Denmark, Sweden and Norway

– Psychologists/neuropsychologists met in Oslo University Hospital in june 2012 – discussing the first proposal

– Agreed upon a version by internet contact

•Presented in the yearly conference in Malmø for users and professionals of CPOP/CPUP, october 2012

A process – it takes time!

• Initiative and involvement of the users’organizations

• The professional interest and backing, - the wish to better the quality of existing follow-up programs

Why?The aim• Experiences from CPUP

– Hip dislocations almost eliminated

– Prevalence of severe contractions significantly reduced

– The rate of orthopedic operations signitficantly reduced

• Experiences from CPOP– Increase in the quality of monitoring of physical

development – a more uniform follow-up of children across regions and communities

– The knowledge of methodology among professionals all over the country: much increased

The aim of cognitive monitoring

• To change the trajectory of the misjudged children with cp, and help all children who need our expertise in a better way – in short: prevent unnessesary cognitive dysfunction

• By gaining more knowledge through registering systematically: – cognitive resources and impairments

– early onset, individually adapted, special education measures

– acknowledging that the road is long…..

Aim (cont.)

• To be met with correct demands and expectations is the basis of coping, of optimal development, of feelings of self-confidence and self-esteem

Cognitive and social problems in the CP population – a quick repetition

• Cognitively: significant problems in attention and excecutive functions – Focused attention and vigilans

– Problems of perception and of visuoconstruction

– Working memory, inihibition, metacognition

• Lead to learning difficulties and social problems

• Socially: problems in peer- and other social relations– Fewer peers

– More bullying

– More alone in breaks in school and at home

Examples of the relation between cognitive and social/emotional problems

• Visual perception problems: To understand the meaning of facial expressions, of gestures, complex play in the schoolyard

• Processing speed: to keep up when participating in a group of youths’ speedy interactions – as in laughing in the right place, or commenting right on time and not half a minute later

• Attentional problems: to focus the important aspect, ignore the unimportant – as in hearing what the teacher says even though a fellow pupil enters the room

• Initiativ and flexibility: to suggest things, initiate activities, to venture something out of the ordinary

CP Cog.

Age Time Other

evaluations

Instrument

GMFCS level I-III

Instrument

GMFCS level

IV-V

5/6 years Before starting

school

Norway: CPRN

Sweden: HabQ

WPPSI-III (full scale

and indexes)

VMI (complete)

BRIEF

(parents, teacher)

Vineland-II

(when necessary)

Subtests

form

standardised

test

batteries

that can be

adapted to

children

with

physical

disabilities.

PEDI

12/13 years Before transition

to secondary

school

Sweden: HabQ WISC-IV (full scale

and indexes)

VMI (complete)

BRIEF

(parents, teacher)

Vineland-II

(when necessary)

Suggested expansion (in the long term)Age Time Other evaluations Instrument

GMFCS level I-III

Instrument

GMFCS level IV-V

2 years

(minimum if no

verbal language)

When diagnosed with CP Norway: CPRN Bayley-III

(cognitive + language)

Subtests form

standardised test

batteries that can be

adapted to children

with physical

disabilities.

PEDI

5/6 years Before starting school Norge: CPRN

Sverige: HabQ

WPPSI-III (whole scale)

VMI (complete)

BRIEF preschool

Vineland-II

(when necessary)

12/13 years Before transition to

secondary school

Sweden: HabQ WISC-IV (whole scale)

VMI (complete)

BRIEF (parent, teacher)

Vineland-II

(when necessary)

15 years Before transition to high-

school

Norway: CPRN young WISC-IV (whole scale)

VMI (complete)

BRIEF (parent, teacher)

Vineland-II

(when necessary)

18 years/

young adult

Before transistion to

adult life: higher

education, work, driving

WAIS-IV (whole scale)

VMI (complete)

BRIEF (parent, teacher)

Vineland-II

(when necessary)

Rationale of the battery of instruments

• Tests that will uncover the child’s strengths and

impairments

• The Wechsler batteries: many subtests, i.e. opportunity to find the fine nuances

– WISC IV: scales of different cognitive funcional areas • Verbal comprehension

• Perceptual resonnering

• Working memory

• Processing speed

– Core battery: Full scale IQ

Rationale (cont.)

• The Beery-Buktenica Developmental Test of Visual-Motor Integration

– 2 additional tests: Visual perceptionFine motor coordination

– Visuospatial function

– Visual analysis

– Visuo-construction

– Eye-hand co-ordination

– Gives an IQ

BRIEF: Behavior Rating Inventory of Executive Function

The Behavior Regulation Index:

3 subscales

- Inhibit

- Shift

- Emotional Control

Metacognitive Index:

5 subscales

- Initiate

- Working Memory

- Plan/Organize

- Organization of Materials

- Monitor

• Global Executive Composite– Behavioral Regulation Index

– Metacognition Index

Social and adaptive skills: Vineland II

• Vineland Adaptive Behavior Scales – Second Edition– Survey Interview Form– Parent/Caregiver Rating Form– Teacher Rating Form– Expanded Interview Form

To summarize• The proposed program builds on scientifically sound

methodology - standardized, with norms - that is widely used in the Nordic countries, as well as internationally

• Most neuro-, health- and school psychologists are trained in using these instruments

• It is a core battery: in the clinical setting often necessary to use a wider battry of instruments

• The program does not cover: – The learning process

– Memory

The scope of CP Cog. in Scandinavia

• Prevalence CP: approx. 2/1000 in the Nordic countries (Andersen et al, 2008; Hagberg et al, 2001)

• Testing at 5 and 12, this means

– Denmark: 140 x 2 pr year

– Sweden: 220 x 2 pr year

– Norway: 120 x 2 pr year (19 Habilitation Centres for children, M = 12 examinations pr year)

Implementation of the program in the three countries

• Sweden: The Habilitation Centres should be responsible, co-ordinating it with HabQ

• Denmark: The local communities are responsible for habilitation, the program should be conducted by them. Some regional/national involvement (VISO) is wanted

• Norway: The Habilitation Centres for Children responsible for the data collection. Registration in

database will be linked to CPRN-registration (The

Cerbral Palsy Registry of Norway)

Do you want a procedure for the cognitive follow-up of children with CP?

Ja (15 av 16)

Nei (1 av 16)

The Nordic working group• From Sweden

Margareta Kihlgren and Åsa Korsfeldt

• From DenmarkLouise Bøttcher and Klaus Christensen

• From NorwayKristine Stadskleiv and Torhild Berntsen

• From Island: Not participated yet – no neuropsychologist found

• [Finland: Not participated]