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KIK Kinderafasie in Kaart mapping the field of ACA Rehabilitation of acquired language and communication disorders in childhood Els van de Pavert, Rijndam rehabilitation

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KIK Kinderafasie in Kaart

mapping the field of ACA

Rehabilitation of acquired language and

communication disorders in childhood

Els van de Pavert, Rijndam rehabilitation

Acquired Childhood Aphasia (ACA)

Language disorder in children, caused by brain damage after the onset of language acquisition.

- Normal language development - Brain damage: Acute onset or deterioration - Recovery - Further development of language skills - age: 2-18 years

R o t t e r d a m N e u r o r e h a b i l i t a t i o n R e s e a r c h

SOA Brussels 2013

Etiology of aphasia

Adults: 1. Stroke (95%) 2. Head trauma 3. Tumor 4. Infection

Children: 1. Head trauma frequent 2. Stroke infrequent 3. Specific diseases in childhood (e.g. Landau Kleffner)

SOA Brussels 2013

Recovery in adults possible patterns

0

10

20

30

40

50

60

70

80

90

100

110

1 2 3 4 5 6 7 8 9 10 11 12

normal

aphasia 1

aphasia 2

aphasia 3

aphasia 4

aphasia 5

aphasia 6

Perc

enta

ge language

level

Time post onset (months)

SOA Brussels 2013

Normal language development in children

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

age (years)

% a

ge c

om

ple

ted

normal

SOA Brussels 2013

limited recovery, impaired development

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

age (years)

% a

ge l

an

gu

ag

e d

evelo

pm

en

t

normal

aphasia 2

SOA Brussels 2013

Complete recovery

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

age (years)

% a

ge l

an

gu

ag

e d

evelo

pm

en

t

normal

aphasia 1

SOA Brussels 2013

growing into deficit

0

10

20

30

40

50

60

70

80

90

100

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18

age (years)

% a

ge l

an

gu

ag

e d

evelo

pm

en

t

normal

aphasia 3

How to diagnose & treat ACA?

• ACA is very rare: SLTs feel insecure in treating patients

• Rehabilitation in a variety of settings

• Recovery interacts with language acquisition

• Population is heterogeneous in terms of etiology, age, severity, etc

• No evidence for specific treatment approaches

Aim

Optimising the rehabiliation of children with

acquired disorders of language and communication

in the Netherlands.

What are the target population’s characteristics?

Baseline

Etiology, psychosocial variables, language and communication

Diagnosis and assessment

Regular diagnostic procedure; which instruments are used

Treatment

intensity, duration and type of treatment

Recovery

recovery during first year post injury

Unmet needs

children, parents, school, SLTs

Multicenter study

Part 1 (7 months):

Delphi procedure (professionals)

to achieve consensus among professionals on diagnosis, assessment, variables in shared database

Part 2 (2 years):

National database

Delphi procedure

To achieve consensus among a group of experts

• Online questionnaires

• Several rounds with questionnaires (3 rounds)

• Feedback on results is given anonymously

• Work towards consensus

• Each participant contributes to the project

Delphi procedure in KIK

• Consensus on language assessment and other variables that

will be included in the database

• Participants: SLTs, psychologists, rehab doctors, neurologists

from (all?) NL centers specialised in rehab in childhood

• Core set of language tests, to be administered in participating

centers at 1 month, 3 months and 6 months post injury

Part 2: national database

Provided that part 1 is successful:

Part 2: 2 years

• Implementing a multicenter prospective database; systematic

routine registration of characteristics

Many centers interested in participating!

10 rehab clinics have signed a declaration of interest:

Revalidatie-instelling Plaats

Adelante Hoensbroek

Libra Revalidatie & Audiologie Tilburg

Revant Medisch

Specialistische Revalidatie

Breda

het Roessingh Enschede

De Vogellanden Zwolle

Klimmendaal Apeldoorn

De Hoogstraat Utrecht

De Trappenberg Huizen

Rijndam Revalidatie Rotterdam

Erasmus MC-Sophia

Kinderziekenhuis

Rotterdam

Kinderafasie in Kaart

Principal investigator Dr. W.M.E. van de Sandt-Koenderman, klinisch linguïst, Rijndam revalidatie & Erasmus MC Revalidatiegeneeskunde, Rotterdam Coordinator research project Els D.C. van de Pavert, Rijndam revalidatie, Rotterdam Research group

Dr. C. E. Catsman-Berrevoets, kinderneuroloog, UHD, Erasmus MC, Rotterdam

Drs. S.A.M. Lambregts, kinderrevalidatiearts, Revant revalidatie, Breda

Drs. R.F. Pangalila, kinderrevalidatiearts, Rijndam revalidatie, Rotterdam

M. Priest, logopedist taalexpertiseteam, Rijndam revalidatie, Rotterdam

Prof. dr. G.M. Ribbers, Professor Neurorevalidatie, Rijndam revalidatie & Erasmus

MC Revalidatiegeneeskunde, Rotterdam