15
Clinical Rehabilitation 2010; 24: 887–900 A systematic review of arm activity measures for children with hemiplegic cerebral palsy K Klingels, E Jaspers, A Van de Winckel Department of Rehabilitation Sciences, Faculty of Kinesiology and Rehabilitation Sciences, Katholieke Universiteit Leuven, P De Cock Department of Paediatrics, Faculty of Medicine, Katholieke University Leuven, G Molenaers Department of Musculoskeletal Sciences, Faculty of Medicine, Katholieke University Leuven and H Feys Department of Rehabilitation Sciences, Faculty of Kinesiology and Rehabilitation Sciences, Katholieke University Leuven, Heverlee, Belgium Received 26th June 2009; revised manuscript accepted 16th February 2010. Objective: To identify psychometrically sound and clinically feasible assessments of arm activities in children with hemiplegic cerebral palsy for implementation in research and clinical practice. Data sources: PubMed, CINAHL, Cochrane Library, Web of Science and reference lists of relevant articles were searched. Review methods: A systematic search was performed based on the following inclusion criteria: (1) evaluative tools at the activity level according to the International Classification of Functioning, Disability and Health; (2) previously used in studies including children with hemiplegic cerebral palsy aged 2–18 years; (3) at least one aspect of reliability and validity in children with cerebral palsy should be established. Descriptive information, psychometric properties and clinical utility were reviewed. Results: Eighteen assessments were identified of which 11 met the inclusion criteria: eight functional tests and three questionnaires. Five functional tests were condition-specific, three were generic. All functional tests measure different aspects of activity, including unimanual capacity and performance during bimanual tasks. The questionnaires obtain information about the child’s abilities at home or school. The reliability and validity have been established, though further use in clinical trials is necessary to determine the responsiveness. Conclusions: To obtain a complete view of what the child can do and what the child actually does, we advise a capacity-based test (Melbourne Assessment of Unilateral Upper Limb Function), a performance-based test (Assisting Hand Assessment) and a questionnaire (Abilhand-Kids). This will allow outcome differentiation and treatment guidance for the arm in children with cerebral palsy. Introduction Children with hemiplegic cerebral palsy are faced with a variety of motor and sensory impairments that have an impact on their arm functioning. 1 Address for correspondence: Katrijn Klingels, Department of Rehabilitation Sciences, Katholieke University Leuven, Tervuursevest 101, 3001 Heverlee, Belgium. e-mail: [email protected] ß The Author(s), 2010. Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav 10.1177/0269215510367994

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Clinical Rehabilitation 2010; 24: 887–900

A systematic review of arm activity measures for childrenwith hemiplegic cerebral palsyK Klingels, E Jaspers, A Van de Winckel Department of Rehabilitation Sciences, Faculty of Kinesiology and RehabilitationSciences, Katholieke Universiteit Leuven, P De Cock Department of Paediatrics, Faculty of Medicine, Katholieke UniversityLeuven, G Molenaers Department of Musculoskeletal Sciences, Faculty of Medicine, Katholieke University Leuven andH Feys Department of Rehabilitation Sciences, Faculty of Kinesiology and Rehabilitation Sciences, Katholieke UniversityLeuven, Heverlee, Belgium

Received 26th June 2009; revised manuscript accepted 16th February 2010.

Objective: To identify psychometrically sound and clinically feasible assessments

of arm activities in children with hemiplegic cerebral palsy for implementation in

research and clinical practice.

Data sources: PubMed, CINAHL, Cochrane Library, Web of Science and reference

lists of relevant articles were searched.

Review methods: A systematic search was performed based on the following

inclusion criteria: (1) evaluative tools at the activity level according to the

International Classification of Functioning, Disability and Health; (2) previously used

in studies including children with hemiplegic cerebral palsy aged 2–18 years; (3) at

least one aspect of reliability and validity in children with cerebral palsy should be

established. Descriptive information, psychometric properties and clinical utility

were reviewed.

Results: Eighteen assessments were identified of which 11 met the

inclusion criteria: eight functional tests and three questionnaires. Five

functional tests were condition-specific, three were generic. All functional

tests measure different aspects of activity, including unimanual capacity

and performance during bimanual tasks. The questionnaires obtain information

about the child’s abilities at home or school. The reliability and validity have been

established, though further use in clinical trials is necessary to determine the

responsiveness.

Conclusions: To obtain a complete view of what the child can do and what the

child actually does, we advise a capacity-based test (Melbourne Assessment of

Unilateral Upper Limb Function), a performance-based test (Assisting

Hand Assessment) and a questionnaire (Abilhand-Kids). This will allow

outcome differentiation and treatment guidance for the arm in children with

cerebral palsy.

Introduction

Children with hemiplegic cerebral palsy are facedwith a variety of motor and sensory impairmentsthat have an impact on their arm functioning.1

Address for correspondence: Katrijn Klingels, Department ofRehabilitation Sciences, Katholieke University Leuven,Tervuursevest 101, 3001 Heverlee, Belgium.e-mail: [email protected]

� The Author(s), 2010.Reprints and permissions: http://www.sagepub.co.uk/journalsPermissions.nav 10.1177/0269215510367994

Page 2: Document2

Adequate assessment of arm function in thesechildren is crucial not only to outline treat-ment, but also to measure the efficacy and toallow follow-up over time. According to theInternational Classification of Functioning,Disability and Health (ICF), the upper limb canbe assessed at the level of body function, activityand participation.2 For the hemiplegic child,spasticity and/or dystonia, weakness, impaireddexterity and coordination deficits are problemsat the level of body function. Arm activity limita-tions reflect the difficulties experienced duringreaching, grasping, manipulating and releasingobjects with the hemiplegic arm and hand. Asmany daily activities involve these functionaltasks, limitations in arm activities can hinder thechild’s participation in school and leisure activities.Over the last two decades, several measurement

tools have been designed to assess arm activities inchildren with hemiplegic cerebral palsy. Thesetools each involve different clinically relevantaspects. As expressed in the ICF, a differentiationcan be made between the qualifiers ‘capacity’ and‘performance’. Capacity refers to the child’s abilityto execute a task on the highest probable levelof functioning that the child may reach in a stan-dardized environment. Quality of movement(e.g. active range of motion, fluency, accuracy),dexterity and movement speed are all componentsof capacity. Performance refers to the child’s spon-taneous use of the hemiplegic hand during activi-ties or play.3 To obtain a complete representationof the child’s abilities, these different qualifiers ofarm function have to be considered. In addition,to allow implementation in research and clinicalpractice, the selected outcome measures shouldhave sound psychometric properties, such as reli-ability, validity and the ability to detect clinicallyimportant differences.Currently, several clinical measures are avail-

able to assess arm function. However, in the pre-sent state of outcome measurements for armactivities in children with cerebral palsy, there islittle consistency about their use in research andclinical practice. This lack of consistency compli-cates the identification of suitable measurementtools for follow-up and treatment. To the best ofour knowledge, there has been no systematic over-view and comparison of these tools. Therefore, theaim of this study was to give a systematic review of

clinical tools appropriate for assessing arm func-tion in children with hemiplegia. The descriptiveinformation, clinical utility and psychometricproperties of the selected outcome measures willbe assessed. This review offers a flexible frame-work to support the selection of suitable outcomemeasures for arm activities.

Methods

Papers were selected through an electronic searchof the following databases (January 2009):PubMed, CINAHL, Cochrane Library and Webof Science. Keywords (MeSH) for the search strat-egy included ‘cerebral palsy’ and ‘upper extrem-ity’. To focus search results, these keywords werecombined with text words for ‘outcome assess-ment’, ‘questionnaire’ and ‘activity’. Identifiedassessments were subsequently searched individu-ally, combined with terms such as ‘psychometricproperties’, ‘reliability’ and ‘validity’. Referencelists from included articles were hand-searched todetect further relevant papers.

Two authors (KK and EJ) assessed the title andabstract of each study to identify and select theoutcome assessments. Tools were included if theymet the following inclusion criteria: (1) evaluativetools at the ICF level of activity; (2) previouslyused in studies including children with cerebralpalsy aged 2–18 years; (3) at least one aspect ofreliability and validity in children with cerebralpalsy should be established.

Both condition-specific assessments developedspecifically for children with cerebral palsy andgeneric assessments were included. The latterassessments focus on discriminating between typi-cally developing children and children with adevelopmental delay, arising from a broad rangeof disabilities.

Tools were excluded if they: (1) were not pub-lished in English; (2) primarily assessed impair-ments or participation restrictions; and (3) wereinstruments based on individually identified goals.

In the case of disagreement, the selected out-come measure was discussed with a third author(HF) until consensus was reached.

A data extraction sheet based on theOutcome Measures Rating Form4 allowed for

888 K Klingels et al.

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the comparison of descriptive information, clinicalutility and psychometric properties of the selectedassessments:

� Descriptive information was gathered for eachassessment to determine target population, pur-pose, content, number of domains/items andscoring criteria.

� Clinical utility entailed the administrationformat, test duration and scoring time, requiredequipment and need for rater training.

� Psychometric properties addressed the reliabilityand validity of the outcome assessment.

Reliability was defined as the extent to which theassessment produces consistent and reproducibleresults on repeated administration (test–retest)when used by the same rater (intra-rater) or whenused by different raters (inter-rater).5 The followingguidelines were used for the interpretation of thereliability coefficients. Intraclass correlation coeffi-cients (ICC) above 0.80 were considered excellent;0.60–0.79 adequate; below 0.60 poor. Kappa coef-ficients between 0.81 and 1.00 were considered asan almost perfect agreement, 0.61–0.80 as a sub-stantial agreement and 0.41–0.60 as a moderateagreement.6 In addition, the standard error of mea-surement (SEM), the smallest detectable difference(SDD) and the minimal clinically important differ-ence were reported. The SEM provides an absoluteindex of reliability as it indicates the variability ofscores around the subject’s true score. The SDD isrequired to conclude whether the subject shows areal improvement rather than a difference in scoredue to measurement error. The SDD equals theSEM� 1.96�ˇ2.7 The minimal clinically impor-tant difference is referred to as the smallest changein measurement that is considered to be meaningfulbased on clinicians’ ratings.8 Validity is the extentto which an evaluation tool actually measures whatit is intended to measure.5 Content, construct andconcurrent validity were reviewed.

Results

The search strategy is outlined in Figure 1.Eighteen assessments were identified, of which 11assessments met the predefined inclusion criteria.

These were further reviewed to evaluate their psy-chometric properties. Seven assessments wereexcluded. The selected instruments were classifiedas functional tests, either condition-specific (n¼ 5)or generic (n¼ 3), and questionnaires (n¼ 3).

The condition-specific functional tests were theQuality of Upper Extremity Skills Test (QUEST9),the Melbourne Assessment of Unilateral UpperLimb Function (Melbourne Assessment10), theShriners Hospital for Children Upper ExtremityEvaluation (SHUEE11), the Assisting HandAssessment (AHA12) and the Video ObservationsAarts and Aarts (VOAA13). Generic functionaltests included the Bruininks-Oseretsky Testof Motor Proficiency (BOTMP14), the PeabodyDevelopmental Motor Scales (PDMS15) and theJebsen-Taylor Hand Function Test (Jebsen-Taylor test16).

The selected questionnaires were theAbilhand-Kids,17 the Revised Pediatric MotorActivity Log (PMAL-revised18) and the PediatricEvaluation of Disability Inventory (PEDI19).

Descriptive informationFunctional tests

Descriptive information on the tests is presentedin Table 1. The majority of the functional testsevaluate the child’s upper limb capacity, whileonly the AHA and the VOAA evaluate the upperlimb performance during bimanual tasks.

The QUEST and the Melbourne Assessmentare evaluative tools that measure upper limb qual-ity of movement by means of various unimanualitems.9,10 While the QUEST focuses on dissociatedmovements, grasp, weight bearing and protectiveextension, the Melbourne Assessment assessesitems that involve reach, grasp, release and manip-ulation. Items are further subdivided into subitemswhich are scored on a dichotomous scale for theQUEST and a 3- to 5-point ordinal scale for theMelbourne Assessment.

The SHUEE is a more recently developed toolthat consists of two sections.11 The first sectionincorporates different subscales at the level ofbody function, such as range of motion andmuscle tone. The second section includes three com-ponents: spontaneous functional analysis, dynamicpositional analysis and grasp–release analysis.

Arm activity measures for children with cerebral palsy 889

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[Mesh term] [Text word]

“CP” and “upper extremity” AND “outcome assessment” 63 papers

AND “activity” 50 papersAND “questionnaire” 18 papers

Studies selected based on title and abstract 29 papers

Excluded assessments n=3

1) Individually identified problems/goals based on a semi-structured interview

COPM20 & GAS21

2) Primarily assesses participation restrictionWeeFIM22

Functional tests n = 8

Identified assessments related to arm activity n=18

Outcome assessments at the level of activity n=15

Excluded assessments n = 4

1) Psychometric properties not established, children aged <2 years

EDPA23

2) Psychometric properties not established in children with CP

BBT24, PPT25 & CHAQ26

Outcome assessments evaluated n = 11

Psychometric evaluation

Questionnaires n = 3

5 Condition-specific tests

3 Generic tests

Figure 1 Flow diagram of selection of outcome assessments. COPM, Canadian Occupational Performance Measure;

GAS, Goal Attainment Scale; WeeFIM, Functional Independence Measure for children; EDPA, Erhardt Developmental

Prehension Assessment; BBT, Box and Block test; PPT, Purdue Pegboard Test; CHAQ, Childhood Health Assessment

Questionnaire.

890 K Klingels et al.

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Table

1D

escriptive

info

rmation

of

the

sele

cte

din

str

um

ents

tom

easure

upper

limb

activitie

s

Targ

et

popula

tion

Capacity

Perf

orm

ance

Norm

-re

fere

nced

Crite

rion-

refe

renced

Dia

gnosis

Age

Unim

anual

Bim

anual

Unim

anual

Bim

anual

Functionaltests

QU

ES

T9

CP

18

month

s–8

years

þþ

Melb

ourn

eA

ssessm

ent1

0C

P5–15

years

þþ

SH

UE

E11

Hem

iple

gia

3–18

years

þþ

þA

HA

12

Hem

iple

gia

or

Erb

’spare

sis

18

month

s–12

years

þþ

VO

AA

13,2

7C

P2.5

–10

years

þþ

BO

TM

Psubte

st

814

Child

ren

with

DD

4.5

–14.5

years

þþ

þP

DM

S-2

-FM

15

Child

ren

with

DD

0–6

years

þþ

þJebsen-T

aylo

rte

st1

6C

hild

ren

with

DD

5–18

years

þþ

Questionnaires

Abilh

and-K

ids

17

CP

6–15

years

þþ

þP

MA

L-R

evis

ed

18

CP

7m

onth

s–8

years

þþ

þP

ED

I19

Child

ren

with

DD

6m

onth

s–7.5

years

þþ

þþ

þ

CP

,cere

bra

lpals

y;

DD

,develo

pm

enta

ldis

abili

ties;þ

,description

applic

able

for

the

instr

um

ent;

QU

ES

T,

Qualit

yof

Upper

Extr

em

ity

Skill

sTest;

SH

UE

E,

Shriners

Hospitalf

or

Child

ren

Upper

Extr

em

ity

Evalu

ation;A

HA

,A

ssis

ting

Hand

Assessm

ent;

VO

AA

,V

ideo

Observ

ations

Aart

sand

Aart

s;B

OTM

P,B

ruin

inks-

Osere

tsky

Test

of

Moto

rP

roficie

ncy;

PD

MS

-2-F

M,

Peabody

Develo

pm

enta

lM

oto

rS

cale

s–

Fin

eM

oto

rabili

ties;

PM

AL-R

evis

ed,

Revis

ed

Pedia

tric

Moto

rA

civ

ity

Log;

PE

DI,

Pedia

tric

Evalu

ation

of

Dis

abili

tyIn

vento

ry.

Arm activity measures for children with cerebral palsy 891

Page 6: Document2

The different components are scored on a 2- to 6-point ordinal scale.The AHA assesses how effectively the hemiple-

gic hand is actually used in bimanual activities.12

The spontaneous use is evaluated during a semi-structured play session with toys requiring biman-ual handling. The items that are scored includegeneral use, arm use, grasp and release, finemotor adjustments, coordination and pace. Allitems are scored from 0 (does not do) to 4 (effec-tive use).The VOAA is a recently developed observa-

tional tool to measure the spontaneous arm useby means of a computer software program.13,27

The duration and frequency of specific behavioursof the affected arm are calculated during differentbimanual activities, such as making a sandwich,playing with Lego blocks, removing a shoe, string-ing beads and decorating a muffin.The BOTMP and PDMS-2 are designed to mea-

sure gross and fine motor abilities. Subtest 8 of theBOTMP can be used to evaluate fine motor skillsin terms of speed and dexterity.14 This subtestinvolves eight tasks, such as placing pennies in abox, sorting shape cards, stringing beads andmaking dots. Tasks are scored on a 7- to 10-point scale. The fine motor abilities of thePDMS-2 are divided into two subtests, includinggrasping and visuomotor integration.15 Items arescored on a 3-point ordinal scale. The raw scoresfrom the BOTMP and PDMS-2 can be convertedinto a standard score with an age equivalent.The Jebsen-Taylor test measures movement

speed in seven unimanual tasks.16 The time tocarry out the task is registered and comparedwith norm values.28 The test was modified for chil-dren with hemiplegic cerebral palsy whereby thewriting task was removed, and the time to carryout each task was reduced from 3 to 2minutes toavoid frustration.29,30

QuestionnairesThe Abilhand-Kids and PMAL-revised are con-

dition-specific, and the PEDI is a generic question-naire. All questionnaires are completed by thechild’s parents or caregivers.The Abilhand-Kids comprises 21 mainly biman-

ual daily activities.17 The difficulty experienced by

the child to perform the required tasks is scored ona 3-point ordinal scale.

The PMAL-revised documents the spontaneoususe of the affected arm in every day activities.18

The original PMAL has been modified based ona Rasch analysis. The revised version consists of22 unimanual and bimanual tasks. For each task,both the amount of use and the quality of move-ment of the affected arm are rated on a 3-pointordinal scale.

The PEDI quantifies a child’s level of abilityand dependency in many daily activities.19 Thequestionnaire incorporates three domains: self-care, mobility and social functioning. For eachdomain, functional skills are rated dichotomouslyand caregiver assistance is rated on a 6-point ordi-nal scale ranging from ‘total assistance’ to‘independence’.

Clinical utilityTable 2 shows that the administration time for

all functional tests is approximately 10–15min-utes, except for the more extensive PDMS-2-FM.For the video-based assessments, the scoring after-wards takes another 10–30minutes. The durationto fill in the questionnaires ranges from 10 to60minutes.

Another issue is the difference in costs to obtainthe assessment. While some tools can be down-loaded for free, others require the purchase ofstandardized materials. Administering and scoringthe AHA and the VOAA requires a certificate thatcan only be obtained after attending a specificrater training course. For the other functionaltests, rater training is only recommended to stan-dardize the scoring system between raters and toaim for an optimal reliability of the assessment.

Psychometric propertiesData on the psychometric properties are pre-

sented in Table 3. All reported reliability resultsare based on the population of children with cere-bral palsy. The intra-rater, inter-rater and test–retest reliability have been established for allcondition-specific functional tests, except for thetest–retest reliability of the SHUEE. The reliabilityof all condition-specific and generic functional

892 K Klingels et al.

Page 7: Document2

Table

2C

linic

alutilit

yof

the

sele

cte

din

str

um

ents

tom

easure

upper

limb

activitie

s

Adm

inis

tration

form

at

Test

dura

tion

Equip

ment

tobe

purc

hased

Rate

rtr

ain

ing

Adm

inis

tration

tim

e(m

inute

s)

Scoring

tim

e(m

inute

s)

Manual

Sta

ndard

ized

mate

rial

Functionaltests

QU

ES

T9

Direct

observ

ation/

vid

eo

record

ing

15

15–30

þ�

Melb

ourn

eA

ssessm

ent1

0V

ideo

record

ing

15

15–30

þþ

SH

UE

E11

Vid

eo

record

ing

15

15–30

Fre

e dow

nlo

ad

��

AH

A12

Vid

eo

record

ing

10–15

15–30

þþ

þV

OA

A13,2

7V

ideo

record

ing

10

20

þþ

þB

OTM

Psubte

st

814

Direct

observ

ation

15

þþ

�P

DM

S-2

-FM

15

Direct

observ

ation

20–30

þþ

�Jebsen-T

aylo

rte

st1

6D

irect

observ

ation

10–15

þþ

�Questionnaires

Abilh

and-K

ids

17

Pare

nt

questionnaire

10

Fre

e dow

nlo

ad

��

PM

AL-R

evis

ed

18

Pare

nt

questionnaire

5–15

��

PE

DI1

9D

irect

observ

ation

or

str

uctu

red

pare

nt

inte

rvie

w45–60

þ�

þ,

required

for

test

adm

inis

tration;

–,

not

required

for

test

adm

inis

tration.

QU

ES

T,Q

ualit

yof

Upper

Extr

em

ity

Skill

sTest;

SH

UE

E,S

hriners

Hospitalfo

rC

hild

ren

Upper

Extr

em

ity

Evalu

ation;A

HA

,A

ssis

ting

Hand

Assessm

ent;

VO

AA

,V

ideo

Observ

ations

Aart

sand

Aart

s;

BO

TM

P,

Bru

inin

ks-O

sere

tsky

Test

of

Moto

rP

roficie

ncy;

PD

MS

-2-F

M,

Peabody

Develo

pm

enta

lM

oto

rS

cale

s–

Fin

eM

oto

rabili

ties;

PM

AL-R

evis

ed,

Revis

ed

Pedia

tric

Moto

rA

civ

ity

Log;

PE

DI,

Pedia

tric

Evalu

ation

of

Dis

abili

tyIn

vento

ry.

Arm activity measures for children with cerebral palsy 893

Page 8: Document2

Table

3P

sychom

etr

icpro

pert

ies

of

the

sele

cte

din

str

um

ents

tom

easure

upper

limb

activitie

s

Relia

bili

tyV

alid

ity

Intr

a-r

ate

rIn

ter-

rate

rTest–

rete

st

SE

MS

DD

Constr

uct

Conte

nt

Concurr

ent

Functionaltests

QU

ES

T31–33

ICC

0.6

9–0.8

9IC

C0.9

0–0.9

6IC

C0.9

55.0

% (inte

r)13.8

þP

DM

S-2

-FM

Rp

0.8

4

Melb

ourn

eA

ssessm

ent3

3–36

ICC

0.9

7IC

C0.9

5–0.9

9IC

C0.9

7–0.9

83.2

% (inte

r)8.9

þP

ED

Iself-c

are

Rs

0.9

4

PE

DI

tota

lR

s0.7

2S

HU

EE

11

Rp

0.9

8–0.9

9IC

C0.8

9–0.9

0�

��

�þ

þJebsen-T

aylo

rR

p–0.7

6�

w1.0

0�

w1.0

0P

ED

Iself-c

are

Rp

0.4

7A

HA

12,3

7IC

C0.9

9IC

C0.9

7–0.9

8IC

C0.9

8–0.9

91.5 (i

nte

r)5

þ�

��

1.2 (i

ntr

a)

VO

AA

13,2

7�

0.6

3–0.8

5�

0.6

2–0.6

7�

��

�þ

þ�

��

ICC

0.9

6–1.0

0IC

C0.9

5–1.0

0IC

C0.8

7–1.0

0B

OTM

Psubte

st

814,3

0R

p1.0

0a

Rp

0.9

4R

p0.8

62.0 (r

ete

st)

5.5

þþ

��

PD

MS

-2-F

M15,3

8�

�IC

C0.9

8IC

C0.9

2–0.9

91.3 (r

ete

st)

3.6

þþ

QU

ES

TR

p0.8

4

Jebsen-T

aylo

rte

st1

6,2

8,3

0R

p0.9

9a

Rp

0.9

9R

p0.9

9�

�þ

þS

HU

EE

Rp

–0.7

6

Questionnaires

Abilh

and-K

ids

17

��

��

Rp

0.9

1�

�þ

þG

rip

str

ength

Rp

0.5

6B

BT

Rp

0.6

6P

urd

ue

Pegboard

Rp

0.4

5

PM

AL-R

evis

ed

18

��

��

ICC

0.9

3–0.9

4�

�þ

þ�

��

PE

DI3

9�

�IC

C0.9

9IC

C0.9

1–0.9

8�

11.5

%bþ

þM

elb

ourn

ec

Rs

0.7

2–0.9

4S

HU

EE

Rp

0.4

7

ICC

,in

tracla

ss

corr

ela

tion

coeff

icie

nt;

Rs,

Spearm

an

rho

corr

ela

tion

coeff

icie

nt;

Rp,

Pears

on

corr

ela

tion

coeff

icie

nt;�,

kappa

coeff

icie

nt;� w

,w

eig

hte

dkappa;

þ,

esta

blis

hed

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tests is excellent, except for a slightly lower reli-ability for some tasks of the VOAA. For allquestionnaires, test–retest reliability is very high.Inter-rater reliability has only been reported forthe PEDI and is excellent. For the tests withreal-time scoring, as well as for the questionnaires,the assessment of intra-rater reliability is not appli-cable. The SEM and SDD have been establishedfor the QUEST,33 Melbourne Assessment,33

AHA,37 BOTMP14 and PDMS-2-FM.15 For thePEDI, the minimal clinically important difference(11.5%) was reported.8

Both construct and content validity have beenestablished for the selected functional tests andquestionnaires. The concurrent validity was eval-uated for the majority of the assessments.

Although most tests have a good concurrentvalidity, correlations below 0.60 were foundbetween the SHUEE and the self-care domain ofthe PEDI and between the Abilhand-Kids and thePurdue Pegboard test.25

The Rasch rating scale methodology wasapplied during the construction of the AHA,Abilhand-Kids, PMAL-revised and PEDI. Thisstatistical procedure provides sound evidence forunidimensionality and adequate hierarchic scalestructure of these assessments. It also transformsthe original ordinal scale into an interval scalemeasuring a continuum.40

Discussion

This study offers an overview of arm activity mea-surements for children with hemiplegic cerebralpalsy. Eleven psychometrically sound and clini-cally feasible outcome assessments were identified.The selected instruments included eight functionaltests, either condition-specific or generic, and threequestionnaires. The majority of the assessmentsmeasure capacity with standardized items in testsituations where children show what they can dowhen asked to. The capacity of the hemiplegic sidecan be measured with the QUEST, MelbourneAssessment, SHUEE, Jebsen-Taylor test,BOTMP or the PDMS-2-FM. Performance-based tests or questionnaires measure what chil-dren actually do in daily life. This aspect can bemeasured with the AHA, VOAA or with a

questionnaire such as the Abilhand-Kids,PMAL-revised or the PEDI.

Comparison of the different condition-specifictests shows that the QUEST is suitable to evaluatethe quality of movement of the affected arm invery young children as it comprises domainsrelated to motor development, such as dissociatedmovements, weight bearing and protective exten-sion. For children from 5 years of age on, theMelbourne Assessment can be used. This testentails a more detailed scoring of the quality ofmovement compared to the dichotomous scoringof the QUEST, and it includes also aspects such asspeed, accuracy and fluency. Since the MelbourneAssessment is validated for children up to the ageof 15 years, the test is more appropriate for long-term follow-up.33 The SHUEE, on the other hand,is the only test that provides a detailed analysis ofthe position of the thumb, fingers, wrist, forearmand elbow. This aspect is particularly relevant toevaluate the effect of interventions at the level ofbody function, such as botulinum toxin A injec-tions or surgery.

Although the latter three tests were included asmeasures at the level of activity, there may besome ambiguity relating these measures to theICF framework. For the Melbourne Assessment,several subitems score aspects at the body functionlevel (i.e. range of motion, fluency). The QUESTalso measures items at the body function level (i.e.dissociated movements) and in the SHUEE thedynamic positional analysis may fit in this level.Still, these tests incorporate grasping and manip-ulation abilities and items are assessed in the con-text of activities. However, the fact that the above-mentioned outcome measures span different ICFlevels may complicate the clinical interpretation ofthe results.

Apart from the capacity, it is also important toassess a child’s performance. In these tests childrenare not specifically asked to execute the task withtheir affected hand, but encouraged to use it inplay or daily activity, where bimanual handlingis required. This aspect is measured in the AHAand the VOAA. The AHA comprises a detailedevaluation of the different functions of the hemi-plegic arm and hand administered in a play ses-sion. The VOAA can be used to calculate the exactquantity of use of the hemiplegic hand duringdaily activities. Both tests are suited to evaluate

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the effect of therapy modalities which aim toimprove the involvement of the hemiplegic armduring daily activities (e.g. constrained-inducedmovement therapy).Generic tests are designed for children with a

broad range of developmental disabilities andhave a discriminative ability. The BOTMP andthe PDMS-2-FM cover a wide variety of skills,such as use of pen or scissors. These tests describeaspects of age-related hand function, but they givelittle or no information concerning the qualityof movement of the hemiplegic arm and hand.Thus, they are less suitable for clinical guidance.The most important contribution of these norm-referenced tests for children with cerebral palsy istheir use in identifying a child’s need and eligibilityfor therapy services by determining the extent ofthe child’s delay or dysfunction.3 The Jebsen-Taylor test is a short unimanual test to score themovement speed during unimanual fine motoractivities, a component not addressed in othermeasures.Standardized tests do not necessarily reflect how

the child actually performs in their normal envi-ronment. This information on ‘real life’ function-ing may be gathered through direct enquiry fromthe child and/or the child’s parents. The Abilhand-Kids is a short questionnaire focused on arm func-tion during daily activities and gives informationfor goal setting in occupational therapy. ThePEDI covers a broad domain of the child’s func-tioning, whereby both the activity level andaspects of the participation level are considered.A drawback to use the PEDI is a ceiling effect inthe group of children with hemiplegia as they oftencompensate with their healthy side for the prob-lems experienced with the affected side.41 Therecently revised PMAL has been specifically devel-oped to evaluate the effects of constraint-inducedmovement therapy. The two subscales of thePMAL-revised allow differentiation between‘how often’ versus ‘how well’ a child uses his hemi-plegic arm and hand.18

In the historical development of assessmenttools, there is a clear trend to shift from the eval-uation of capacity to performance. Comparingwhat a child is able to do with his hemiplegicarm, and what the child actually does allows theclinician to make a comprehensive analysis of thechild’s abilities and the ‘developmental non-use’ of

the hemiplegic side. If the difference betweencapacity and actual performance is large, thechild may have potential for a more effective per-formance. Intervention can thus focus on estab-lishing a useful spontaneous behaviour andlearning to use the underlying capacity (e.g. con-straint-induced movement therapy or task-oriented training). If the child is fully using hisor her capacities but with a poor result, interven-tion should focus on improving the biomechanicalprerequisite for handling objects, for examplestrength training, botulinum toxin A injectionsor a surgery. Therefore, measures of hand functionfor both capacity and performance are needed toallow outcome differentiation and to guidetreatment.3

A further important criterion to select tests orquestionnaires is the fulfilment of psychometricproperties. The reliability and validity of boththe functional tests and the questionnaires havebeen established. Only for the VOAA test areadditional validity studies necessary.

The Melbourne Assessment and the QUESThave frequently been used in clinical trials thatinvestigate the effects of botulinum toxin A injec-tions42–46 as well as the self-care domain of thePEDI.42,45,46 Some studies have suggested thatthe Melbourne Assessment might not be suffi-ciently sensitive to changes brought about by bot-ulinum toxin A treatment,42,44,46 while the QUESTand the self-care domain of the PEDI seemmore sensitive.42,46 The AHA and the raw scoresof the generic tests have shown change in interven-tion studies focusing on forced use therapy,47

constraint-induced movement therapy29,48,49

and hand–arm bimanual intensive training(HABIT).50 The SHUEE, the VOAA, theAbilhand-Kids and the revised-PMAL have notbeen used in intervention studies so far.

The SEM, the SDD and the minimal clinicallyimportant difference are very useful concepts inintervention studies to establish that a changehas really occurred for a child. These measureshave been reported for the QUEST,33 MelbourneAssessment,33 AHA,37 BOTMP,14 PDMS-2-FM15

and PEDI.8 The values are acceptable andcorrespond to reported measurement errors ofother arm scales in stroke patients (e.g. theAction Research Arm Test and Brunnstrom–Fugl–Meyer Test).51 In future research, these

896 K Klingels et al.

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values should be determined for the otherassessments.

A strong asset of the AHA, the Abilhand-Kids,the PEDI and the PMAL-revised is that thesetests are developed by means of a Rasch analysis.Besides the stronger statistical properties, a Rasch-based scale also provides the therapist informationon which items have already been mastered andwhich items can be reached in the near future bypractice.40

The most prominent barrier for clinicians to reg-ularly use standardized tests is the time required toadminister and score them. For the selected instru-ments, test duration ranges from 10 to 60minutes.Video-taped tests requiring subsequent scoringtake more time. Moreover, these tests necessitatethe availability of a video set-up and a spacioussetting. These aspects as well as other aspects ofclinical utility, such as the difference in costs, canalso play a decisive role in the selection ofinstruments.

Thus far, two reviews have been published onoutcome measures in children with cerebral palsy,one on measures of gross motor function andmobility52 and a second on participation mea-sures.53 Although reviews on arm activity mea-sures are available in other conditions, such aschildren with congenital transverse or longitudinalreduction deficiency of the arm54 and adults withstroke,55 this is the first review that systematicallyassessed the quality of arm activity measuresin children with hemiplegic cerebral palsy.Nonetheless, there are some limitations that mustbe considered. It is possible that we have missedtools that are used in clinical practice, but have notbeen applied in research. However, we consideredit appropriate to only include measures withsome evidence of psychometric evaluation.Furthermore, studies assessing psychometric char-acteristics included different types of cerebralpalsy with a varying degree of severity and withvarying ages. In this review, the results of thesestudies are summarized. This must be kept inmind when implementing measurement tools.Another aspect that has not been addressed isthe possible bottom or ceiling effect of the mea-sures. However, this has not been described in pre-vious studies and thus this issue warrants furtherattention.

Conclusion

Results of this systematic review identified five con-dition-specific functional tests, three generic testsand three questionnaires suitable to measure armactivities in children with hemiplegic cerebral palsy.All assessments measure different aspects of activity,including capacity and performance. The reliabilityand validity have been established though further usein clinical trials will be necessary to determine theresponsiveness and research utility of the assess-ments. To obtain a complete view of what the childcan do and what the child actually does in differentsettings, we would suggest combining a capacity-based test (Melbourne Assessment), with aperformance-based test (AHA) and a questionnaire,Abilhand-Kids. The selection of these tests is basedon the content, clinical utility and psychometricproperties. Other assessments could be consideredto evaluate specific therapy modalities. This reviewcan offer a framework to help the therapist chooseamong the various assessments in order to guide andevaluate treatment interventions for arm and handfunction in children with cerebral palsy.

Clinical messages

� Arm activities can be measured with severalreliable and valid measurement tools, eachaddressing different aspects of unimanualand bimanual activities.

� A combination of capacity and perfor-mance-based measures is crucial for abetter understanding of the child’s abilitiesin order to guide and evaluate treatmentstrategies.

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