Cognitive monitoring of children with CP: Background, aim and rationale of the proposed Nordic assessment protocol - Pre-conference symposium EACD ...
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Cognitive monitoring
of children with CP:
Background, aim and rationale of the
proposed Nordic assessment protocol
Pre-conference symposium
EACD 2013 Newcastle
Torhild BerntsenBackground • 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
supportBackground (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 2012A 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 increasedThe 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 Instrument Instrument
evaluations GMFCS level I-III GMFCS level
IV-V
5/6 years Before starting Norway: CPRN WPPSI-III (full scale
school Sweden: HabQ and indexes) Subtests
VMI (complete) form
BRIEF standardised
(parents, teacher) test
Vineland-II batteries
(when necessary) that can be
12/13 years Before transition Sweden: HabQ WISC-IV (full scale adapted to
to secondary and indexes) children
school VMI (complete) with
BRIEF physical
(parents, teacher) disabilities.
Vineland-II PEDI
(when necessary)Suggested expansion (in the long term)
Age Time Other evaluations Instrument Instrument
GMFCS level I-III GMFCS level IV-V
2 years When diagnosed with CP Norway: CPRN Bayley-III
(minimum if no (cognitive + language)
verbal language)
5/6 years Before starting school Norge: CPRN WPPSI-III (whole scale)
Sverige: HabQ VMI (complete)
BRIEF preschool
Vineland-II
(when necessary)
12/13 years Before transition to Sweden: HabQ WISC-IV (whole scale)
Subtests form
secondary school VMI (complete)
standardised test
BRIEF (parent, teacher)
batteries that can be
Vineland-II
adapted to children
(when necessary)
with physical
15 years Before transition to high- Norway: CPRN young WISC-IV (whole scale) disabilities.
school VMI (complete) PEDI
BRIEF (parent, teacher)
Vineland-II
(when necessary)
18 years/ Before transistion to WAIS-IV (whole scale)
young adult adult life: higher VMI (complete)
education, work, driving 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 IQRationale (cont.)
• The Beery-Buktenica Developmental Test of
Visual-Motor Integration
– 2 additional tests: Visual perception
Fine motor coordination
– Visuospatial function
– Visual analysis
– Visuo-construction
– Eye-hand co-ordination
– Gives an IQBRIEF: Behavior Rating Inventory of
Executive Function
The Behavior Regulation Index: Metacognitive Index:
3 subscales 5 subscales
- Inhibit - Initiate
- Working Memory
- Shift
- Plan/Organize
- Emotional Control
- Organization of Materials
- Monitor
• Global Executive Composite
– Behavioral Regulation Index
– Metacognition IndexSocial 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 Denmark
Louise Bøttcher and Klaus Christensen
• From Norway
Kristine Stadskleiv and Torhild Berntsen
• From Island: Not participated yet – no neuropsychologist found
• [Finland: Not participated]You can also read
