Validated questionnaires and scales for measuring outcomes in
children with Cerebral Palsy
Virginia Knox
Determining a baseline of function in children with cerebral palsy is essential for setting goals,
planning treatment and assessing progress following intervention. One strategy for obtaining
baseline function is to use parent and child questionnaires which have the added advantage of
immediately involving the child and family in the goal setting process and can lead to helpful
reflection on what the child can do and what they might be able to do next. These can also prove a
helpful adjunct to clinic-based tests. Many of these are available as free downloads or free online
tests meaning they are widely available in any country.
These measures include:
Validated questionnaires and scales for measuring outcomes in children with Cerebral
Palsy ................................................................................................................................1
1. Mobility Questionnaire 47 and 28 (MobQuest) 1,2 ............................................................... 1
2. Locomotion Ability Measure (Abil-Loco Kids)3 .................................................................... 2
3. Measure of manual ability for children with upper limb impairment (Abil-Hands Kids)4,5 .... 2
4. Child Hand Use and Experience Questionnaire (Mini CHEQ and CHEQ 2) 6............................ 2
5. Pediatric Quality of Life Measurement Model PedsQL 7....................................................... 2
6. Cerebral Palsy Quality of Life Questionnaire CPQOL - Child8 ............................................... 3
7. Caregivers Priorities and Child Health Index CPChild 9 (changing name to PSCORE) .............. 4
8. Assistance to Participate Scale APS10 ................................................................................. 4
Bibliography............................................................................................................................. 4
Information follows about each of these scales and questionnaires, and sources. For some of these
translations in other languages also exist. For more information on development of the measures,
reliability and validity please see references.
1. Mobility Questionnaire 47 and 28 (MobQuest)1,2
These are evaluations for children with cerebral palsy of 47 and 28 daily indoor and outdoor mobility
activities. These are rated on a 5-point Likert scale from ‘Not difficult at all’ to ‘Impossible without
help’. Examples of easier activities include sitting down on a bed or chair, standing still, walking in
and outdoors. The most difficult items include walking downstairs holding an object, standing while
taking a shower to running on grass or sand when outdoors. Any aids typically used by the child are
also recorded. It was originally tested on children aged 2 to 13 years, GMFCS I-IV. The questionnaire
and scoring instructions can be downloaded free from the Amsterdam University Hospital:
Amsterdam Universitair, Medische Centra UMC search for MobQuest (MoVra – dutch) and English
translation or go to this link.
There are also German, Korean, Turkish translations in development.
2. Locomotion Ability Measure (Abil-Loco Kids)3
This is a 10-item scale of mobility activities for children with cerebral palsy aged 6-15 years. Items
are rated on a 3-point Likert scale from impossible to easy. Items range from walking less than 5
metres holding furniture to going up an escalator alone. It was developed using the Rasch model so
the raw scores can be entered online to be converted into scores arranged on a linear scale.
French and English translations were developed at Louvain University and can be found at Rehab-
Scales. Research articles can be located documenting translation work into Turkish, Gujerati, Arabic
and Japanese.
3. Measure of manual ability for children with upper limb impairment (Abil-Hands
Kids)4,5
The Abil-Hands Kids is a measure of manual ability for children with upper limb impairments aged 6-
15 years. Items are rated on a 3-point Likert scale from impossible to easy. Items range from putting
on a hat and taking off a T-shirt to unscrewing a bottle top and sharpening a pencil. It was developed
using the Rasch model so the raw scores can be entered online to be converted into scores arranged
on a linear scale. This is available in French and English at Rehab-Scales. Research articles can be
located documenting translation work into Iranian, Arabic, Ukrainian and Turkish.
4. Child Hand Use and Experience Questionnaire (Mini CHEQ and CHEQ 2)6
These are online questionnaires assessing experience of hand use when bimanual activities are
executed in children 3-8 years and 6-18 years with unilateral hand impairment (Obstetric Brachial
Plexus Palsy, hemiplegia, Upper limb deficiency). The questionnaire can be completed by the child,
the parent & child together or the parent (if child under 13 years). There are 27 items in the CHEQ
and 21 items in the Mini CHEQ. Examples include putting money in a purse or wallet, eating out of a
small container of yoghurt, pulling up track suit trousers and removing the wrapping from an ice
cream. Items are rated on 4-point Likert scales for perceived efficacy of grasp (ineffective to
effective); time taken to perform activity (considerably to equally long); and degree of feeling
bothered (much bothered to not bothered). Scoring uses Rasch methodology, so scores can indicate
the level of item difficulty achieved and detect discrepancies between overall test score and
observed scores for each item. Scores can be downloaded in the form of a report showing the profile
of the individual child.
It is available at www.cheq.se in English, Swedish, Norwegian, Russian, Portuguese, Spanish,
German, French, Italian, Turkish, Hebrew, Arabic and Japanese.
5. Pediatric Quality of Life Measurement Model PedsQL 7
This measures health-related quality of life (HRQOL) in healthy children and adolescents and those
with acute and chronic health conditions. It contains 23 items so is brief making it a feasible measure
taking less than 4 minutes to complete. It is a generic questionnaire but there are also disease
specific modules: for cerebral palsy asthma, rheumatology, diabetes, cancer, cardiac and other
conditions. Items are scored on a five-point scale from never a problem to always a problem.
Examples of items from the generic scale are:
School Functioning, e.g.
Paying attention in class
Keeping up with schoolwork
Missing school to go to the doctor or hospital
Physical functioning, e.g.
Walking a block
Participating in sports
Low energy level
Having hurts or aches
There are parent Proxy-Reports for ages 2-4, 5-7, 8-12, 13-18 and Child Self-Reports for ages 5-7, 8-
12, 13-18. It is multidimensional including physical, emotional, social and school functioning. The
PedsQL has been demonstrated to show responsiveness to clinical change over time, and good
reliability (Total Scale Score: 0.88 Child Self-Report; 0.90 Parent Proxy-Report). It is valid,
distinguishing between healthy children and children with acute and chronic health conditions; and
distinguishes disease severity within a chronic health condition.
This measure is available here and has been translated into multiple languages (see website for
information).
6. Cerebral Palsy Quality of Life Questionnaire CPQOL - Child8
The Cerebral Palsy Quality of Life Questionnaire for Children (CP QOL-Child) and Cerebral Palsy
Quality of Life Questionnaire for Adolescents (CP QOL-Teen) assess the quality of life of children with
cerebral palsy aged 4-12 years and adolescents aged 13-18 years. There are child and youth report
questionnaires and caregiver questionnaires with between 53 and 66 items each. Items are rated on
9-point Likert scales, e.g. from 1 (very unhappy) to 9 (very happy) or from 1 (not at all bothered) to 9
(very bothered).
Examples of themes within the different sections are:
• Social wellbeing & acceptance e.g. going on trips with family
• Participation and physical health e.g. ability to participate in sports
• Functioning e.g. sleep, ability to dress yourself
• Emotional wellbeing e.g. how you feel about yourself, how you look, how you get on with
parents
• Pain and impact of disability e.g. how much pain do you have?
• Access to services e.g. therapy, respite care, equipment
• Family health e.g. are you bothered by hospital visits?
It is available here and has been or is in the process of being translated from English into the
following languages. Arabic, Bahasa Indonesian, Bahasa Malaysian, Dutch, Farsi, French, German,
Greek, Hebrew, Italian, Korean, Mandarin, Myanmar, Polish, Portuguese, Serbian, Spanish, Tamil,
Thai and Turkish.
7. Caregivers Priorities and Child Health Index CPChild 9 (changing name to
PSCORE)
A questionnaire for the caregivers of children with severe cerebral palsy GMFCS IV & V or severe
traumatic brain injury. It measures functional and health status, caregiver burden and health related
quality of life in children. It was designed for measuring change before and after interventions such
as orthopaedic surgery and has been used pre and post baclofen pump.
There are six domains:
• Personal care / Activities of daily living, e.g. eating or being fed
• Positioning, Transferring & Mobility e.g. getting in and out bed
• Comfort & Emotions e.g. frequency of discomfort when dressed/undressed
• Communication & Social interaction e.g. difficulty of child playing alone
• Health e.g. number of visits to hospital
• Overall quality of life including the importance of items to the child’s quality of life.
Parents/carers are asked to consider how each of the activities is usually performed by/for their
child. Then they are asked to rate how difficult each activity was in the past 2 weeks on a 7 point
Likert scale from Impossible to no problem at all, and choose the level of assistance that was
required to help their child perform the activities on a four point Likert scale from Total assistance to
independent. Examples of items are putting on and wearing footwear (shoes, socks, splints),
The manual can be downloaded here and it is available in a wide variety of languages. Sick kids
research is in the process of moving this to a new web page called PSCORE.
8. Assistance to Participate Scale APS10
This measures the assistance that a school-aged child with a disability requires to participate in 8
play/leisure activities at home or in community from the primary caregiver’s perspective E.g. watch
TV, play with friend at a playground, attend a club. Items are rated on 5-point Likert scale:
• Unable to participate
• Participates with my assistance at all stages of the activity
• Participates after I have set him/her up and help at times during activity
• Participates with my supervision only
• Participates independently.
The APS can be used to evaluate changes in the level of assistance after interventions designed to
increase participation.
It is available as a free download at CanChild website and the scale can be found here.
Bibliography
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Measuring mobility limitations in children with cerebral palsy: content and construct validity
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limitations in children with cerebral palsy: interrater and intrarater reliability of a mobility
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