Anna Kushnir
This material is based on the article “Understanding Function and other Outcomes in Cerebral Palsy” published in the August 2009 issue of Physical Medicine and Rehabilitation Clinics of North America.
A large number of tests have been developed for clinical practice and research in cerebral palsy (CP). This article discusses several of the most commonly used tools. The list is not exhaustive and should not be interpreted as a list of “best” instruments. The purpose is to show that outcome evaluation in CP is multidimensional, and tool selection should be based on the study aim and the patient population.
This overview follows the framework of the International Classification of Functioning, Disability and Health (ICF), which describes functioning and health in three main domains:
Measures focused on body structure are relatively rarely used in clinical CP trials, although most children have CT or MRI brain imaging to support the diagnosis of CP. Some studies use functional MRI (fMRI) to assess brain activity during specific tasks.
Currently, little is known about how MRI findings relate to clinical parameters in people with CP and how such data can be practically used. Only a few studies report reliability of interpreting fMRI results in certain patient populations [10, 11]. Due to high cost and limited availability in specialized centers, this technology is rarely used for CP treatment outcome assessment.
Body functions are frequently assessed in CP research. Since CP treatment often aims to reduce spasticity, the Ashworth and Tardieu scales are commonly used. These scales measure resistance during passive limb movement.
The Ashworth scale and Modified Ashworth Scale have limited reliability, and their validity has not been established (in part because spasticity is difficult to quantify) [12]. The Tardieu scale may be somewhat more reliable [13]. Despite clear limitations, these spasticity measures are widely used in CP clinical and research settings because no better, easily applicable tools are available.
Strength is most commonly measured using dynamometry. Different dynamometers and dynamometry protocols exist—some are easier to use, others are more reliable. A comparative study of different dynamometry methods has been performed [14]. Strength measurement is widely used in treatment planning and research.
Range of motion can be assessed by goniometry, using a handheld goniometer placed on the child’s limb to measure angles. Reliability of goniometry in CP research varies [15, 16], but it is widely used in routine clinical practice.
Activity measures are used less frequently in routine practice because they require more time and staff training.
The Gross Motor Function Measure (GMFM) consists of a series of tasks performed by the patient and scored by a physical therapist. It has established reliability and validity [17]. Administration takes about one hour, but it provides a quantitative assessment of motor development that can be compared with published gross motor development curves for children with CP [18].
The PEDI is a structured interview with the child or the parents, providing quantitative indicators of self-care, mobility, and social function. It has demonstrated reliability, validity, and responsiveness [19].
The COPM can be considered a measure of both activity and participation (within the ICF model). It captures the child’s assessment of performance in everyday tasks and their level of satisfaction [20]. This tool is relatively unique because it helps identify the child’s individual priorities. Reliability, validity, and responsiveness have been established.
Most participation measures have adequate reliability and validity but low responsiveness. The Children’s Assessment of Participation and Enjoyment (CAPE) assesses which activities a child participates in and what interests they have. The tool includes a list of 55 activities and questions about what, where, when, and how often participation occurs.
Overall health is assessed using questionnaires. Some instruments are generic and applied across pediatric populations. One such measure is the Pediatric Quality of Life Inventory (PedsQL) [22], which includes physical and psychosocial scales and is completed by children and parents. Another generic quality-of-life tool is KIDSCREEN, also completed by children or parents [23].
Specialized instruments include the Cerebral Palsy Quality of Life Questionnaire for Children (CP-QOL) [24] and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD) [25]. CP-QOL is completed by the child or parents and assesses the overall quality of life. CPCHILD captures child health status and caregiver burden for children with more severe disability and is completed by parents. These questionnaires have been studied for reliability and validity.
In recent years, classification tools have been widely used for children with CP. Alongside anatomical descriptions (e.g., spastic diplegia, tetraplegia), clinicians and researchers increasingly rely on functional classifications.
The most widely used is the Gross Motor Function Classification System (GMFCS) [9]—a reliable, stable, and easy-to-use system dividing children with CP into five functional levels. Level I includes children who walk without limitations but may have difficulties with advanced motor skills. Level V includes children with very limited self-mobility, even with assistive technology. Similar classification systems exist for hand function [27] and communication [28].
(As in the original text)
Pediatrician and senior research fellow specializing in pediatric rehabilitation. Member of EACD and AACPDM.
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