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Indian Pediatr 2016;53: 805-810 |
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Application of the
International Classification of Functioning, Disability and
Health - Children and Youth in Children With Cerebral Palsy
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Deepa Jeevanantham
From Health and Rehabilitation Sciences Graduate
Program, Western University, London, Ontario, Canada.
Correspondence to: Deepa Jeevanantham, Health and
Rehabilitation Sciences Graduate Program, Western University, London,
Ontario, Canada.
Email: [email protected]
Published online: June 01, 2016. PII:
S097475591600011
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The International Classification of Functioning, Disability and Health
(ICF) is a framework for describing health status; however, there is a
gap in literature for supporting its use as a classification tool. The
purpose of this paper is to provide a perspective on its use in
describing children with cerebral palsy. The interconnected concepts of
the ICF are more important than the classification elements itself.
Further research is required to prove its use as a classification tool
in clinical practice.
Keywords: Cerebral Palsy, Disability, Evaluation,
Guidelines.
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Cerebral palsy (CP) is a common childhood physical
disability and describes a "group of permanent disorders of the
development of movement and posture, causing activity limitation that
are attributed to non-progressive disturbances that occurred in the
developing fetal or infant brain. The motor disorders of cerebral palsy
are often accompanied by disturbances of sensation, perception,
cognition, communication, and behavior, by epilepsy, and by secondary
musculoskeletal problems" [1].
The World Health Organization’s (WHO) International
Classification of Functioning, Disability and Health (ICF) provides a
framework to describe a wide range of information about health, and is a
standard language for describing health and health-related states [2].
The ICF can be used to describe the health status of children with CP
[3]. However, it requires revision and augmentation for direct use with
children and adolescents as the manifestations of a disorder in children
and adolescents are different from those of adults [4,5].
A version of the ICF for children and youth, the
ICF-CY was published in 2007 [6]. The International Classification of
Diseases (ICD) and the ICF are complementary as the ICD provides codes
for diagnosis, and the ICF provides codes for describing the health and
health related states [2,6,7]. The ICF is well-accepted as a framework;
however, its use as a classification tool is still unclear. The WHO
encourages the ICF/ICF-CY and the ICD-10 classifications to be used
together [2,6,7]. A health
professional can diagnose a health condition using the ICD-10 and
describe the health status using the ICF [5]. As the use of the ICF as a
classification tool warrants further development, the purpose of this
paper is to offer perspectives on its use in describing children with
CP.
Organization and Interpretation
The ICF/ICF-CY can be divided into two parts:
functioning and contextual factors. Functioning is in turn divided into
three components: body structure/function, capacity, and participation.
The contextual factors include two components: environmental factors and
personal factors. The structure of the ICF is presented in Table
I. The components consist of specific domains which refer to a
meaningful state of physiological functions, anatomical structures,
actions, tasks and so on.
TABLE I Structure of the International Classifiation of Functioning Disability and Health.
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Functioning and disability |
Contextual factors |
Components |
Body structures |
Activities and |
Environmental factors |
Personal factors |
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and function |
Participation |
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Domains |
Body functions |
Life areas |
External influences on |
Internal influences on |
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Body structures |
(tasks, actions) |
functioning and disability |
functioning and disability |
Constructs |
Change in body |
Capacity (Executing |
Facilitating or hindering |
Impact of attributes of the |
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functions (Physiological ) |
tasks in a standard |
impact of features of the |
person |
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Change in body structures |
environment) |
physical, social and |
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(Anatomical) |
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attitudinal world |
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Performance |
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(Executing tasks in a |
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current environment) |
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Positive aspects |
Functional and structural |
Activities and |
Facilitators |
Not applicable |
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integrity |
Participation |
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Negative aspects |
Impairment |
Activity limitation and |
Not applicable |
Disability |
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participation restriction |
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Barriers/hindrances |
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(Reproduced with permission from the World
Health Organization. International Classification of
Functioning, Disability and Health. Geneva, Switzerland: World
Health Organization; 2001).
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The components of the ICF/ICF-CY are interpreted by
means of constructs (i.e frame), which are operationalized by using
qualifiers. The qualifiers indicate the severity of the health
condition. In the absence of a qualifier, the codes are meaningless. For
example, the code d415 (maintaining a body position) doesn’t provide any
meaningful information, rather d415.2 indicates that the person is
having moderate difficulty in maintaining a body position. The
qualifiers convert the domains of the ICF/ICF-CY to a classification.
The domains of the ICF/ICF-CY are arranged hierarchically and are
expressed via coding. The primary qualifier for body structure and body
function indicates the presence of impairment on a five point scale (no
impairment, mild, moderate, severe and complete). For example, b1100.0
indicates that the child has no impairment in the state of
consciousness. The activity and participation component is coded using
‘performance qualifier’ and ‘capacity qualifier’. The performance
qualifier refers to what an individual usually does in the typical
environment whereas the capacity qualifier refers to what an individual
can do in a standard environment. The qualifier for coding environmental
factors indicates the extent to which a factor is a facilitator or a
barrier [2, 6]. One disadvantage of the ICF is the use of the terms
mild, moderate and severe. These terms are subjective and may mean
differently for different people; therefore, less helpful [8]. Further
work is needed to validate the use of descriptive terminologies.
Significant features
The ICF-CY is a universal classification system that
describes and measures the health and functioning of children and youth
from birth to 18 years of age. It consists of four age bands; infancy
(0-2), early childhood (3-6), middle childhood (7-12) and adolescence
(13-18). The ICF-CY can be widely used in administrative, clinical and
research settings for children and youth. Through the documentation of
child-environment interaction the ICF-CY can provide a basis for
intervention planning by identifying current barriers and the required
facilitators. Although the interconnected concept is more important than
the classification elements itself, the classification elements can be
considered as a yardstick. Another important implication of the ICF-CY
is that, it can be used as a framework for selecting outcome measures,
in addition to its use as an outcome measure. The ICF-CY can also serve
as a standard reference for defining rights of children and adults with
disabilities [9]. The ICF-CY can advance evidence-based practice
in a number of ways [6,10]. The WHO is in the process of merging the
ICF-CY to the ICF in order to make it make more simple and comprehensive
[11].
Limitations. The ICF, in spite of serving
as a standard conceptual framework and covering most of the dimensions
of health, has certain limitations. There is lack of significant
evidence on its use as a classification tool. The description of the use
of the qualifiers needs to be explained more clearly in order to be used
reliably. The use of subjective terminologies to describe the severity,
and the reliability and validity with which these terminologies could be
used effectively also limits its application [8]. In addition, the
description of the core sets are also complex. Further research in this
area may clarify these questions and augment the application of the ICF
as a classification tool.
ICF-CY core sets for CP
The ICF classification system contains 1685
categories. Many of these categories cannot be easily used in clinical
practice and clinical research. In order to reduce the complexity and be
able to apply it in practice, ICF core sets are required [10,12]. Core
sets are lists of categories that serve as international standard for
reporting function related to a specific health condition. There are two
ICF core sets: brief core sets and comprehensive core sets. A brief core
set consists of 10 to 20 categories, and can be used as a minimal
standard to describe the function and health of a child with a specific
health condition. The comprehensive core set consists of 70-150
categories, offering a multidisciplinary comprehensive assessment for
individuals with specific health conditions [12,13].
To date, core sets have been developed for adult
populations. Recently, ICF core sets have also been developed for
children with CP [12]. These core sets may serve as a reference
framework and a practical tool to classify and describe functioning more
efficiently in children with CP [12,14]. The overall ICF framework is
robust; however, ICF-CY core sets may better characterize the
functioning of children with CP.
Application of ICF/ICF-CY in Cerebral Palsy
The ICF/ICF-CY has a broad application in terms of
describing developmental disabilities and is an effective framework for
describing the health status of children with CP. The ICF-CY framework
broadens clinical approaches, encouraging care plans for children with
CP that consider body structure/functions, activity and participation,
and environment [3,6,7,10]. The ICF-CY includes learning and playing as
part of the developmental process [6]. The potential for describing CP
using the ICF-CY is demonstrated below (Box I). As stated
earlier, the terminologies mild, moderate, and severe are influenced by
personal preferences and therefore revision of the severity
terminologies in terms of levels similar to the Gross Motor Function
Classification System (GMFCS), the Manual Ability Classification System
(MACS) and the Communication Function Classification System (CFCS) may
be more meaningful. Table II shows the description of each
levels of the GMFCS, the MACS and the CFCS.
Box 1 Application of the ICF in Children with CP |
The following codes could be used to classify and describe a
child with CP depending on the structure and function involved,
capacity and performance and the impact of environment.
• Change in body structure:
Structure of brain – s110, Cortical structure (s1100),
Cerebellum (s1104), Basal ganglia (s1103), etc.
• Change in body function:
Control of voluntary movement (b7600), Involuntary movement
reactions (b7650) etc.
• Capacity: Transferring
oneself, etc (d4200._0)
• Performance: Transferring
oneself, etc. (d4200.3_).
• Barrier/facilitator: General products and
technology for personal use in daily living (e1150.3).
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TABLE II The Five Levels of Gross Motor Function (GMFCS), Manual Ability (MACS), and
Communication Function (CFCS) Classification Systems
Classification systems |
Levels |
GMFCS |
MACS |
CFCS |
I |
Walks without limitations |
Handles objects easily and |
Sends and receives with familiar and unfamiliar
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|
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successfully |
partners effectively and efficiently |
II |
Walks with limitations |
Handles most objects but with |
Sends and receives with familiar and unfamiliar |
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somewhat reduced quality and/or |
partners but may need extra time |
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speed of achievement |
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III |
Walks using a hand-held |
Handles objects with difficulty; |
Sends and receives with familiar partners |
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mobility device |
needs help to prepare and/or |
effectively, but not with unfamiliar partners |
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modify activities |
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IV |
Self-mobility with limitations; |
Handles a limited selection of |
Inconsistently sends and/or receives even with |
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may use powered mobility |
easily managed objects in |
familiar partners |
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adapted situations |
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V |
Transported in a manual |
Does not handle objects and has |
Seldom effectively sends and receives, even with
|
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wheelchair |
severely limited ability to perform |
familiar partners |
|
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even simple actions |
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(Reproduced with permission from Cooley M, et al.
Developmental Medicine & Child Neurology, Mac Keith Press;
2011). |
Body Structure and Body Functions
In body structure component of the ICF-CY, CP is
classified under the "impairments of the nervous system - Brain" which
is coded as ‘S110’. Classification and interpretation of body structure
component involves analysis of severity (first qualifier), location
(second qualifier) and nature of impairment (third qualifier) based on
the scaling of qualifiers [6,7]. For example, code ‘S110.373’ implies a
severe impairment, involving accumulation of fluid at both the sides of
the brain.
The movement and posture aspects of CP can be
categorized under "neuromusculoskeletal and movement related functions"
[6,7]. It is crucial to evaluate the child’s movement and posture as
part of the gross motor function core features of CP. In addition
children with CP may have secondary problems with behaviour,
musculoskeletal function, and participation in society [15]. Coding of
the body functions part is done with a single qualifier that indicates
the extent or magnitude of the impairment [6,7]. For example, the
moderate impairment of a child with athetoid CP can be described with
code ‘b7650.2’. The ICF/ICF-CY might be used to compare function before
and after interventions [6-8,16]
; however, this has not been investigated.
Activities and Participation
The Activities and Participation component in
the ICF/ICF-CY characterizes the function of a person with a health
condition, from both an individual and a societal perspective. Children
with CP may pose an activity limitation [1]. Activity limitation in CP
may include limitation in walking, running and climbing stairs [17]
which may affect the ability of the child to
participate in desired societal roles [1]. It has been reported that
among children with CP, participation restrictions in the domains of
mobility, education, and social relationships were strongly influenced
by activity limitation as measured by the Gross Motor Function
Classification System and by learning disability [18]. Therapists are
more concerned with providing best treatments for motor functioning and
participation [19]. It is important to understand the difference between
activity and participation. Activity refers to what the child can do at
his/her maximum under a controlled environment whereas participation
refers to what the child does every day on his/her usual environment.
Improvement of capacity alone may not be meaningful if it does not have
any impact on the child’s performance. Activities and participation are
coded with two qualifiers: performance qualifier and capacity qualifier.
For example, codes ‘d430’ ‘d440’ and ‘d450’ indicate that the child
experiences difficulty in lifting and carrying objects, fine hand use
and walking, respectively. The performance qualifier (first qualifier)
and capacity qualifier (second qualifier) denote degrees of
participation restriction and activity limitation. For example, code
‘d470.3_’ denotes severe restriction in using transportation, and code
‘d470._3’ indicates severe capacity limitation in using transportation
[1]. The identification of these challenges might guide the
rehabilitation goals and interventions [4,16]. For example, if the
performance of hand functions of the child is restricted by the
environment; assistive devices may be the intervention of choice. If the
capacity of hand function is limited, interventional strategies such as
hand function training is considered. The difference between the
capacity and performance explains the impact of the environmental
factors.
Environmental Factors
Contextual factors are a significant feature of the
ICF/ICF-CY that reflects the social construction of disablement [3].
Environmental factors are an important component of the ICF/ICF-CY that
facilitates identification of environmental barriers and facilitators
which guide in policy and programme development [4, 16]. The
environmental factors can be physical, social, and attitudinal [2,3].
Individual and environmental factors influence the health condition of
children with CP [20]. For
example; environmental factors may include social supports, community
resources, life style, and the availability, quality and expertise of
intervention programs. The qualifiers of environmental factors denote
the extent to which a factor may be facilitator (+ sign) or a barrier (a
point alone). For example, the ICF code ‘e120 + 3’ indicates substantial
facilitation of mobility and transportation. Home modifications are an
effective means to facilitate indoor mobility in children with CP. The
social and cultural environments such as attitudes, beliefs of others,
public policies, and family support may also affect their participation
in daily activities [21-27]. In children with CP, the use of
augmentative interventions such as mobility aids, and alternative
communication devices may have a significant role in compensating for
activity limitations [3].
Rationale for Using the ICF-CY in CP
CP is a neurodevelopmental disorder that can limit
the person’s optimal functioning. Such disorders are of special interest
in rehabilitation, for clinical practice, conducting research, as well
as for administration and assessment of services. Furthermore, data
about functioning in cerebral palsy are important for determination of
the efficacy and cost-effectiveness of health services. There are many
interventions that could help children with CP; however, evidence of
treatment on outcomes is limited. Parents, children, and medical
professionals therefore struggle to choose safe and effective
interventions [28]. The multi-dimensionality of the ICF and the
importance of including parents in making decisions about goal-setting
is supported by Wright and colleagues [29]. The ICF-CY can be used in
identifying and measuring efficacy and effectiveness of the
rehabilitation services by tracing the functional aspects over a period
of time and comparing the effectiveness of targeted intervention [9].
The ICF-CY also reflects the interactive relationship between the health
conditions and the contextual factors. The other aspects that are
usually of interest for service providers in dealing with children with
CP are the capacity and performance. The ICF-CY identifies these issues
and provides guidance for incorporating them to practice. For children
with CP, the ICF-CY provides various points of entry for enhancing
activity and participation and to prevent secondary impairments
[3,8,16].
In summary, the ICF/ICF-CY provides a tool to
describe the health status of an individual from a different perspective
i.e. it helps us to think how a person with disability can live a full
life in the community. From the rehabilitation perspective, the
ICF/ICF-CY guides rehabilitation goal-setting. The ICF-CY with its
components of body structure and body functions, activity and
participation, and contextual factors has the potential to broadly
describe the health status of children with CP and meaningful aspects of
the child’s functioning.
Funding: Deepa Jeevanantham was supported by a
Research Assistantship from the Canadian Institutes of Health Research
funded "On Track" study (MOP: 119276). No funding was secured for this
work.
Competing interest: None stated.
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