Multidisciplinary rehabilitation for patients with cerebral palsy: Improving long-term care

Abstract

Cerebral palsy (CP) is one of the most frequent causes of child disability in developed countries. Children with CP need lifelong assistance and care. The current prevalence of CP in industrialized countries ranges from 1.5 to 2.5 per 1,000 live births, with one new case every 500 live births. Children with CP have an almost normal life expectancy and mortality is very low. Despite the low mortality rate, 5%–10% of them die during childhood, especially when the severe motor disability is comorbid with epilepsy and severe intellectual disability. Given this life expectancy, children with CP present with a lifelong disability of varying severity and complexity, which requires individualized pathways of care. There are no specific treatments that can remediate the brain damage responsible for the complex clinical–functional dysfunctions typical of CP. There are, however, a number of interventions (eg, neurorehabilitation, functional orthopedic surgery, medication, etc) aimed at limiting the damage secondary to the brain insult and improving these patients’ activity level and participation and, therefore, their quality of life. The extreme variability of clinical aspects and the complexity of affected functions determine a multifaceted skill development in children with CP. There is a need to provide them with long-term care, taking into account medical and social aspects as well as rehabilitation, education, and assistance. This long-term care must be suited according to children’s developmental stage and their physical, psychological, and social development within their life contexts. This impacts heavily on the national health systems which must set up a network of services for children with CP, and it also impacts heavily on the family as a whole, due to the resulting distress, adjustment efforts, and changes in quality of life. This contribution is a narrative review of the current literature on long-term care for children with CP, aiming at suggesting reflections to improve these children’s care.

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http://dx.doi.org/10.2147/JMDH.S88782
Multidisciplinary rehabilitation for patients with
cerebral palsy: improving long-term care
Antonio Trabacca
Teresa Vespino
Antonella Di Liddo
Luigi Russo
Scientific Institute I.R.C.C.S. “Eugenio
Medea” – “La Nostra Famiglia” –
Unit for Severe Disabilities in
Developmental Age and Young
Adults (Developmental Neurology
and Neurorehabilitation), Brindisi
Research Centre, Brindisi, Italy
Abstract: Cerebral palsy (CP) is one of the most frequent causes of child disability in developed
countries. Children with CP need lifelong assistance and care. The current prevalence of CP in
industrialized countries ranges from 1.5 to 2.5 per 1,000 live births, with one new case every 500
live births. Children with CP have an almost normal life expectancy and mortality is very low.
Despite the low mortality rate, 5%–10% of them die during childhood, especially when the severe
motor disability is comorbid with epilepsy and severe intellectual disability. Given this life expec-
tancy, children with CP present with a lifelong disability of varying severity and complexity, which
requires individualized pathways of care. There are no specific treatments that can remediate the
brain damage responsible for the complex clinical–functional dysfunctions typical of CP. There
are, however, a number of interventions (eg, neurorehabilitation, functional orthopedic surgery,
medication, etc) aimed at limiting the damage secondary to the brain insult and improving these
patients’ activity level and participation and, therefore, their quality of life. The extreme variability
of clinical aspects and the complexity of affected functions determine a multifaceted skill develop-
ment in children with CP. There is a need to provide them with long-term care, taking into account
medical and social aspects as well as rehabilitation, education, and assistance. This long-term care
must be suited according to children’s developmental stage and their physical, psychological, and
social development within their life contexts. This impacts heavily on the national health systems
which must set up a network of services for children with CP, and it also impacts heavily on the
family as a whole, due to the resulting distress, adjustment efforts, and changes in quality of life.
This contribution is a narrative review of the current literature on long-term care for children with
CP, aiming at suggesting reflections to improve these children’s care.
Keywords: cerebral palsy, rehabilitation, long-term care, disability
Introduction
Cerebral palsy (CP) is one of the most frequent causes of child disability in developed
countries. Children with CP need lifelong assistance and care. The current prevalence
of CP in industrialized countries ranges from 1.5 to 2.5 per 1,000 live births, with
one new case every 500 live births.1,2 Children with CP have an almost normal life
expectancy and mortality is very low. Despite the low mortality rate, 5%–10% of
them die during childhood, especially when the severe motor disability is comorbid
with epilepsy and severe intellectual disability.3–5 Given this life expectancy, children
with CP present with a lifelong disability of varying severity and complexity which
requires individualized pathways of care. CP is an umbrella term for the following:
a group of disorders of the development of movement and posture, causing activity
limitation, attributed to nonprogressive disturbances, occurred in the developing fetal/
Correspondence: Antonio Trabacca
Scientic Institute I.R.C.C.S. “Eugenio
Medea” – “La Nostra Famiglia” – Unit
for Severe Disabilities in Developmental
Age and Young Adults (Developmental
Neurology and Neurorehabilitation),
Brindisi Research Centre, Ex Complesso
Ospedaliero “A. Di Summa” – Piazza “A.
Di Summa”, Brindisi 72100, Italy
Tel +39 831 349 643
Fax +39 831 349 612
Email antonio.trabacca@os.lnf.it
Journal name: Journal of Multidisciplinary Healthcare
Article Designation: REVIEW
Year: 2016
Volume: 9
Running head verso: Trabacca et al
Running head recto: Multidisciplinary rehabilitation in cerebral palsy
DOI: http://dx.doi.org/10.2147/JMDH.S88782
This article was published in the following Dove Press journal:
Journal of Multidisciplinary Healthcare
22 September 2016
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Trabacca et al
infant brain. The motor disorders are often accompanied by
disturbances of sensation, perception, cognition, communi-
cation, behaviour, epilepsy, and musculoskeletal problems.6
This condition is due to alterations in the central nervous
system due to pre-, peri-, and postnatal events before its
development is complete.7–9 There are several classifications
of CP based on factors such as type of tonus, distribution
of impairments, and level of independence (Table 1).6,8,10,11
Today, the prevailing trend in clinical practice is to classify
CP by functional independence in terms of gross motor func-
tion, fine motor function, communication ability, and eating
and drinking ability. Four classifications reflect this trend.
The Gross Motor Function Classification System-Expanded
and Revised and the Manual Abilities Classification System
were developed to characterize mobility and manual function
in CP, respectively, based on the severity of motor function-
ing/performance impairments.12–14 More recently, two other
classification systems were proposed: the Communication
Function Classification System, which is used to character-
ize the daily communication abilities of children with CP,
and the Eating and Drinking Ability Classification System,
which provides a valid and reliable system for classifying
the eating and drinking performance of people with CP.15–17
The Gross Motor Function Classification System-Expanded
and Revised, the Manual Abilities Classification System, the
Communication Function Classification System, and the Eat-
ing and Drinking Ability Classification System were designed
to clearly delineate the functional profile of children with CP
by focusing on activity and participation levels, as described
in the World Health Organization’s International Classifica-
tion of Functioning, Disability, and Health (ICF) and in the
ICF Children and Youth Version (ICF-CY).18–21 These mea-
sures classify people with CP by functional independence
on a five-level scale, ranging from level I =independence to
level V =complete assistance (Table 2).
There are no specific treatments that can remediate the
brain damage responsible for the complex clinical–functional
dysfunctions typical of CP. There are, however, a number of
interventions (eg, neurorehabilitation, functional orthopedic
surgery, medication, aids and devices, etc) aimed at limiting
the damage secondary to the brain insult and improving these
patients’ activity level and participation and, therefore, their
quality of life (Table 3).22,23
The extreme variability of clinical
aspects and the complexity of affected functions determine
a multifaceted skill development in children with CP. Thus,
there is a need to provide them with long-term care, taking
into account medical and social aspects as well as rehabilita-
tion, education, and assistance. This long-term care must be
suited according to children’s developmental stage and their
physical, psychological, and social development within their
Table 2 Functional classications for cerebral palsy
Level I Level II Level III Level IV Level V
GMFCS Can walk without
limitations
Walk with limitations Walk with assistive mobility
device
Walking ability severely
limited even with assistive
devices. Use of power
wheelchair
Transported by manual
wheelchair
MACS Handles objects easily
and successfully
Handles most objects, but
with somewhat reduced
quality and/or speed of
achievement
Handles objects with difculty;
needs help to prepare and/or
modify activities
Handles a limited
selection of easily
managed objects in
adapted situations
Does not handle objects and
has severely limited ability to
perform even simple actions
CFCS Effective sender
and receiver with
unfamiliar and familiar
partners
Effective but slower-paced
sender and/or receiver
with unfamiliar and familiar
partners
Effective sender and receiver
with familiar partners
Sometimes effective
sender and receiver with
familiar partners
Seldom effective sender and
receiver even with familiar
partners
EDACS Eats and drinks safely
and efciently
Eats and drinks safely, but
with some limitations to
efciency
Eats and drinks with some
limitations to safety; there may
be limitations to efciency
Eats and drinks with
signicant limitations to
safety
Unable to eat or drink
safely – tube feeding may
be considered to provide
nutrition
Note: Copyright ©2014. Elsevier Ltd. Adapted from Compagnone E, Maniglio J, Camposeo S, et al. Functional classications for cerebral palsy: correlations between the
gross motor function classication system (GMFCS), the manual ability classication system (MACS) and the communication function classication system (CFCS). Res Dev
Disabil. 2014;35(11):2651–2657.19
Abbreviations: CFCS, Communication Function Classication System; EDACS, Eating and Drinking Ability Classication System; GMFCS, Gross Motor Function
Classication System-Expanded and Revised; MACS, Manual Abilities Classication System.
Table 1 Classications of CP based on type of tonus and
distribution of impairments
Type of tonus approach Topographical approach
Spastic Monoplegia Unilateral
Ataxic Hemiplegia Bilateral
Dyskinetic
Dystonic
Choreoathetotic
Diplegia
Triplegia
Quadriplegia
Abbreviation: CP, cerebral palsy.

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Multidisciplinary rehabilitation in cerebral palsy
life contexts.24 This impacts heavily on the national health
systems which need to set up a network of services for
children with CP, and it also impacts heavily on the family as
a whole, due to the resulting distress, adjustment efforts, and
changes in quality of life. This contribution is a review of the
current literature on long-term care for children with CP, aim-
ing at suggesting strategies to improve these children’s care.
Methods
The review is based on a comprehensive literature review.
We undertook a comprehensive literature search using the
following online databases: PubMed, Medline, ProQuest, and
Scopus. Our aim was to identify original research papers that
explored rehabilitation in CP. Search terms used to identify
literature included: rehabilitation, multidisciplinary, care,
disability, “quality of life”, all in combination with “cerebral
palsy”. We applied these search terms to title and abstracts
in all databases. There was no date restriction for any of the
searches, and studies using any methodological approach
were considered. A selection process by relevance to each of
the domains selected was conducted by the authors, aiming at
a narrative review and not a systematic literature review. The
final number of studies included in this narrative review is 48.
Multidisciplinary rehabilitation
Multidisciplinary rehabilitation is now considered the key
approach in rehabilitation and health care paradigms. Also,
if this is generally true, it is of fundamental importance in the
rehabilitation of CP. CP rehabilitation is a complex process
aiming at ensuring children and their families the best pos-
sible quality of life. By acting both directly and indirectly,
CP rehabilitation considers the individual under all physical,
mental, emotional, communicative, and relational aspects
(holistic feature) and involves their familial, social, and
environmental context (ecological feature) too. Rehabilita-
tion consists of a number of integrated interventions in the
fields of remediation, education, and care.25 This holistic
and ecological approach is supported by the World Health
Table 3 Interventions for cerebral palsy
Rehabilitative interventions Bimanual therapy
Constraint-induced movement therapy
Goal-directed training
Occupational therapy
Home programs for improving motor activity performance and/or self-care
Robotic rehabilitation (for arm and leg training)
Virtual reality rehabilitation
Spasticity management Baclofen (oral format or intrathecal baclofen)
BoNT
Diazepam
Selective dorsal rhizotomy
Orthopedic surgery
Single-event multilevel surgery
Hip surveillance for maintaining hip joint integrity
Orthoses and casting
Other movement disorders management:
dystonia
Anticholinergic medications (eg, trihexiphenidyl), tetrabenazine, benzodiazepines (eg, diazepam),
and baclofen
DBS
Cognitive behavior and social skills
interventions
Behavior therapy and coaching; cognitive behavior therapy
Communication training (alternative and augmentative communication)
Parent training
Counseling
Comorbidities interventions Management of epilepsy (antiepileptic drugs, VNS)
Nutritional management, reux management, swallowing safety, and drooling (eg, dysphagia
management, fundoplication, percutaneous endoscopic gastrostomy/jejunostomy)
Pain management
Bone health management (bisphosphonate medication, vitamin D)
Management of bladder dysfunction (urinary retention and incontinence) and bowel dysfunction
(constipation and soiling)
Management of respiratory complications
Management of visual and hearing impairment
Environmental interventions Assistive technology and assistive devices (eg, wheelchairs, robotics, and communication
devices), ECS, and HAS
Abbreviations: BoNT, botulinum toxin; DBS, deep brain stimulation; ECS, environmental control systems; HAS, home automation systems; VNS, vagus nerve stimulation.

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Trabacca et al
Organization’s ICF. The adult version of the ICF, published
in 2001, and the child and adolescent version (ICF-CY),
published in 2007, are biopsychosocial models which are
increasingly being recognized as an efficacious tool to
describe health and disability and a framework for planning
and monitoring rehabilitation interventions over time.20,21
The ICF and the ICF-CY classify the outcome of a condition
(disorder or illness) in terms of body functions/structures,
activity level, and participation, underlying the need for a
global pathway of care through the involvement of many
stakeholders and moving from a multidisciplinary perspec-
tive only to an integrated multi-, inter-, and transdisciplinary
perspective. The ICF is a sort of common language guiding
this approach. Many published studies stress the importance
of implementation of the ICF in the global management
of pathways of care in CP.26,27 While multidisciplinarity in
CP rehabilitation relies on practitioners’ knowledge from
various disciplines (neurologist, physiatrist, ophthalmolo-
gist, pediatrician, psychologist, speech therapists, educator,
etc), each operating within their own field of competence,
interdisciplinarity integrates, subsumes, and harmonizes the
connections between the different disciplines in a coordinated
and consistent manner to support the development of a life
project for children with CP.26 However, according to the
biopsychosocial model underlying the ICF, the added value
of this approach is transdisciplinarity, namely, a perspective
integrating the natural, social, and health sciences in a
humanities context, and in so doing, enabling each to tran-
scend their traditional boundaries.28 But the actual value of
transdisciplinarity is its going over and above multi- and
interdisciplinary models, as it acts as a common thread for
people from different disciplines who collaborate toward
a common goal and, in order to achieve it, develop a com-
mon framework. Transdisciplinarity combines multi- and
interdisciplinarity with a participative approach, is able to
generate new knowledge, and sets a holistic approach to CP
rehabilitation in which all stakeholders set aside their own
specific perspectives to embrace a global one that is respect-
ful of all individual instances and make a better contribution
to optimal long-term care of children with CP (Figure 1).
The role of the family: family-centered
care (FCC)
Many studies focus on the central role of the family in the
long-term care of children with CP and consider the family
part of a multi-inter-transdisciplinary approach. Today, FCC
is considered the best approach in CP rehabilitation.29,30
Devised by the Association for the Care of Children’s
Health,31 it focuses on the daily needs of children with CP,
views parents as key resources for their children’s lives, sup-
ports the idea that families and practitioners should collabo-
rate within a child’s rehabilitation program, that practitioners
Multidisciplinarity
Interdisciplinarity Transdisciplinarity
Cerebral
palsy
rehabilitation Family-centered care
Child-centered care
Child’s
environment
ICF/ICF-CY
Figure 1 Multi-inter-transdisciplinary approach for cerebral palsy.
Abbreviations: ICF, International Classication of Functioning, Disability, and Health; ICF-CY, ICF Children and Youth Version.

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Multidisciplinary rehabilitation in cerebral palsy
should support parents in coping with their responsibilities,
and that effective interventions by services and facilities must
be based on the values, preferences, priorities, and needs of
families.32 According to the FCC approach, the primary aim
of long-term care is improving the child and the family’s
quality of life, increasing the parents’ satisfaction with, and
their involvement in, the rehabilitation program, as they are
the ones who know their child’s needs and abilities better.
Improving long-term care by putting the family at the center
of this approach means recognizing their central role in the
child’s development and in the successful outcome of rehabil-
itation, as well as their knowledge of their child’s needs.33
This
shows how the family fits into multi-inter-transdisciplinary
care delivery and collaborates with other stakeholders in the
health care decision making. This approach helps relieve the
parents’ distress and improve their perception of the care their
child is receiving. Clarifying and valuing their parental role
improves compliance with the practitioners’ instructions.
The role of the child with CP: child-
centered care
Besides the FCC, which, in the literature, is considered the
best approach to the care of children with CP, the role of
children with CP across developmental stages is relevant
too. A child-centered approach enables us not to lose sight of
the main recipient of care, namely, children with CP, and to
widen the spatial and temporal frame of care delivery targeted
to the real needs of these children.25 This way, children with
CP and their families are recognized in their central role and
families become involved in a rehabilitation program aimed
at delivering the children the best possible opportunities in
terms of health care, improving their activity level and par-
ticipation, and improving their quality of life. The needs of
children with CP are recognized and taken into account, as
are their difficulties, achievements, and developmental stages,
knowing that the objectives of care delivery can and must
change according to age, life contexts, and environment.24 A
child-centered approach sets personalized and individually
targeted objectives.
The role of the environment
The environment plays a fundamental role in CP rehabilita-
tion. Both the ICF and the ICF-CY stress the importance of
its role for health.20,21 Every individual, given their health
status, can live in an environment limiting or impacting their
functional skills and social participation. The ICF correlates
health status and environment and promotes a measurement
system for health, skills, and difficulties, which allows for
identification of obstacles to be removed or interventions
to be implemented, so as to help individuals in their self-
realization. In children with CP, development, functioning,
activity level, and participation are all part of a dynamic
process depending on a constant interaction with the family
or other caregivers in the immediate social environment.
For this reason, in order to understand their functioning,
one must observe them within the family and in their own
environment.26 By environment, we are not only referring
to a physical, social, and psychological dimension, but to
contexts where rehabilitation takes place across, updating
the rehabilitation program according to the child’s achieve-
ments and using aids and devices according to their residual
functions and their activity level and participation.
The role of aids and technologies
In recent years, there has been a change in CP rehabilitation
due to the progressive integration of high-tech aids (robots,
virtual reality, exoskeleton, telemedicine, e-health, etc) in
rehabilitation practice and care delivery.22,34–37 Many studies
have focused on the aids–therapist–patient relationship and
relevant variables, each time stressing the role and the greater
relevance of a variable as compared to others.38 However,
they all support the view that the therapist–patient relation-
ship is important, and aids are useful if used within this
relationship. The term “relationship” refers to a connection
between two individuals, “something” that ties them and
by which they interact. Of course, any aids can support this
interaction, but they can neither replace it nor induce any
changes. The therapist–patient relationship defines the time
and space of change; it is what supports change, and within
it, any aids can be used by the therapist or the patient in
order to achieve it. On the other hand, aids are defined as
“any item, piece of equipment or system commonly used
to increase, maintain or improve functional capabilities of
people with disability”.39 Use of aids always raises a concern
that the therapist–patient relationship may lose its relevance,
with attention shifting to aids, their structure, usefulness,
and technical perfection. Aids must then be looked at from
within a three-way relationship formed by the patient with
CP, the caregiver, and the family, who plays a central role
in the child’s development and is crucial for a successful
outcome. Shifting attention toward a concept of relationship
understood as the context where a specific aid expresses its
potential for change requires all stakeholders to demonstrate
commitment and responsibility for one’s training, growth,
and self-fulfillment – and also to give priority to individuals
over aids.40

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Trabacca et al
Conclusion
CP rehabilitation is a complex issue, owing to a number of fac-
tors. First of all, it is a complex issue as the umbrella term “cere-
bral palsy” subsumes a number of clinical pictures, because of
the difficulties faced by people with CP in terms of facilitating
function and inclusion, minimizing “activity limitation”, and
enabling individual “participation”, and because complex is
the subject of our action, that is, the child with its development
dynamics, which becomes an adolescent and then adult, that
grows and develops together with the disease. Ultimately, it is
a complex issue because people with CP need long-term care
owing to their varied needs. There are several axes that can help
us draw some conclusions based on the published literature.
A “temporal axis” is defined as the time of care. Multi-
disciplinarity becomes integrated with interdisciplinarity and
transdisciplinarity because rehabilitation lasts a lifetime. As
CP is a lifelong condition, habilitation/rehabilitation must start
as early as possible and be delivered continuously – at least
in the child’s first years of life – and intensively – according
to individual needs – and be aimed at promoting skills that
will support social participation and integration in adult life.24
Some published studies41–44 have pointed out how the term
“infantile”, which is often associated to CP, had an impact on
habilitation/rehabilitation plans in the past. Outcome studies
confirm the influence that several variables have on social
participation, such as severity of motor deficits, and presence
of epilepsy or mental retardation. According to the literature,
groups of young adults and adults with CP have reduced inde-
pendence and social life.45,46 This means that, when devising
therapeutic plans, a long-term perspective must be taken, so
as to help these children lead a social life in the future that is
as rewarding as possible given their capacities.
A “spatial axis” is defined as environments and contexts.
All the environments and contexts where the patient with CP
lives (ecological perspective) must be taken into account. Fam-
ily, school, social gathering places, and the individual space
must all be considered in the habilitation and rehabilitation
plan. The individual–environment relationship can have posi-
tive outcomes (integration and participation) as well as nega-
tive ones (withdrawal, disability, difficulties), confirming the
operational definition of “disability” that can be found in the
ICF-CY and ICF: “Disability is characterized as the outcome or
result of a complex relationship between an individual’s health
condition and personal factors, and of the external factors that
represent the circumstances in which the individual lives”.20,21
An “individual axis” is defined as the person’s function-
ing in his globality, focusing on the individual as a whole. In
the literature, motor aspects are attributed more importance
than other factors such as motivation, emotions, and decision
making. However, all these factors are essential for subjective
and relational well-being. Since the beginning, rehabilitation
must look at the individual as an active player, and not as a
passive recipient of care.
A “relational axis” is defined as the quality of inter-
personal relationships. In this axis, the focus is on people
who, in different roles, take care of the patient with CP. A
consistent focus on the patient with CP is instrumental to
a multi-inter-transdisciplinary intervention. A consistent
focus implies that different people in different roles share the
same “existential theory” on the patient with CP: “When we
provide care, rehabilitation and assistance, we do this based
on a conceptual model of man, although we are not aware
of this most of the time”.47 Being aware that the patient with
CP is the leading player in the relationship ensures long-term
care plans with clear objectives and strategies.
The few studies on CP outcomes are not reassuring as
they report a higher rate of psychopathological problems,
pain, motor disability, and distress felt by patient and fam-
ily with a lower quality of life than in other conditions.46,48
This raises questions on the effectiveness of habilitation and
rehabilitation plans for CP.
Figure 2 provides guidance for planning interventions
centered on the subjective and relational well-being of patients
with CP. A consistent focus moves away from the concept that
CP is a clinical condition mainly resulting in a motor limitation.
A consistent focus shares the view that CP is a lifelong condi-
tion, impacting all dimensions, individual variables, and people
to the relationship. A consistent focus promotes forward-look-
ing habilitation and rehabilitation plans, interventions in all life
contexts (from school in childhood to the workplace in adult
life), an approach involving all aspects of individual life, includ-
ing motivation and emotions, and a constant exchange with all
the people to the relationship. A consistent focus can help shape
habilitation and rehabilitation in order to promote the patient’s
adjustment, participation, and subjective and relational
well-being.
Consistent
focus
Temporal axis
Spatial axis
Individual axis
Relational axis
Figure 2 Guidance for planning interventions.

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Multidisciplinary rehabilitation in cerebral palsy
Disclosure
The authors report no conflicts of interest in this work.
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