cognitive monitoring of children with cp: background, aim...
TRANSCRIPT
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]