innovation toward better living
TRANSCRIPT
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http://jcn.sagepub.com/content/early/2014/05/27/0883073814535505The online version of this article can be found at:
DOI: 10.1177/0883073814535505
published online 27 May 2014J Child NeurolAnnette Majnemer
Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View
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Brief Communication
Innovation in the Rehabilitation of ChildrenWith Cerebral Palsy: A 21st-Century View
Annette Majnemer, OT, PhD1, Guest Editor
Received April 08, 2014. Received revised April 08, 2014. Accepted for publication April 09, 2014.
Introductory Comments: InnovationToward Better Living
There have been many important advances in the field of
rehabilitation science at multiple levels, to include more hol-
istic conceptual frameworks, better understanding of underly-
ing mechanisms of dysfunction and recovery, availability of a
spectrum of standardized outcome measures, development of
novel intervention approaches, and innovative application of
technologies to rehabilitation efforts. This special issue,
‘‘Innovation in the Rehabilitation of Children With Cerebral
Palsy: A 21st-Century View,’’ captures many of these impor-
tant advances in rehabilitation science as applied to infants,
children, and youth with cerebral palsy, the most common
physical disability of childhood.
The issue begins with an overview of the International Clas-
sification of Functioning, Disability and Health put forward
by the World Health Organization. This framework has been
rapidly adopted by rehabilitation researchers, and increasingly
by clinicians, and has revolutionized the conceptualization of
rehabilitation approaches. Indeed it is referred to in most of the
manuscripts within this issue. Application of this classification
scheme ensures a holistic view of the child in the context of
their environment, and recognizes that contextual personal and
environmental factors have a strong influence on a child’s
functioning and health, irrespective of their deficits. Reliable
classification systems for children with cerebral palsy are now
available that enable us to easily classify individuals in terms of
their gross motor function, manual ability, and communication
function. This objective information is descriptive of a child’s
ability or performance in everyday activities in real life and
therefore complements other medical diagnostic data in our
efforts to characterize these children.
There has been an exponential increase in available reliable
and valid assessment tools in the ‘‘outcomes toolbox.’’ When
selecting outcome measures, developmentally appropriate mea-
sures that broadly include aspects of the child as well as relevant
contextual factors that influence functioning should be consid-
ered. Furthermore, family and child perspectives (eg, patient-
reported outcomes) are very important in the assessment process
so as to direct intervention focus. There is now an enriched
understanding of the processes and organizational requirements
that underlie a family-centered approach to care. There is also
increasing evidence supporting its benefits to child and family
outcomes.
Much has advanced in the rehabilitation treatments offered
to children and youth with cerebral palsy. Contemporary reha-
bilitation interventions have moved beyond impairment-based
approaches (ie, to normalize or fix deficits) to promoting activ-
ity and participation, with a focus on modifying the task and
environment in addition to or instead of strategies at the impair-
ment level. Factors such as family-centered care, the Interna-
tional Classification of Functioning, Disability and Health,
new outcome measures and new theoretical constructs (all
described in papers in this special issue) have greatly influ-
enced this shift in rehabilitation focus.
This issue describes 3 important treatment approaches:
intensive upper extremity training (constraint-induced move-
ment therapy, bimanual hand arm training), botulinum neuro-
toxin A as an adjunct to upper limb rehabilitation, and
physical activity training. Intensive repetitive upper limb train-
ing for children with hemiplegia, whether unimanual or biman-
ual, attains important functional gains over traditional
approaches. Botulinum neurotoxin A injections can temporar-
ily reduce muscle overactivity, and as such, aims to prevent
or delay upper limb impairments associated with spasticity.
Importantly, botulinum neurotoxin A should not be used in iso-
lation; rather it has become an important adjunct to upper limb
intensive training approaches. Adequate physical activity is a
health concern for all children, but even more so for children
with physical limitations. There have been important advances
in physical fitness assessment and in the demonstration of the
efficacy of physical activity training (aerobic, anaerobic, mus-
cle strengthening) as applied to children with cerebral palsy.
There has been tremendous innovation in technologies
as applied to children and youth with cerebral palsy. Two
1 McGill University, Montreal, Quebec, Canada
Corresponding Author:
Annette Majnemer, OT, PhD, McGill University, 3654 Promenade Sir William
Osler, Montreal, Quebec, Canada H3G 1Y5.
Email: [email protected]
Journal of Child Neurology1-2ª The Author(s) 2014Reprints and permission:sagepub.com/journalsPermissions.navDOI: 10.1177/0883073814535505jcn.sagepub.com
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important areas of advancement are in communication systems
and in the use of virtual reality technologies. Currently, many
novel access solutions and output technologies have been
developed for children with communication restrictions. Aug-
mentative and alternative communication systems are rapidly
evolving and must be tailored to the nonverbal child’s needs
and abilities. Virtual reality is a highly motivating therapeutic
modality that uses interactive simulated environments to per-
form activities, typically in a game format, that promote reha-
bilitation intervention goals. Virtual reality technologies are
increasingly used for assessment and intervention strategies.
There is growing recognition of the importance of leisure
participation in promoting physical and mental health. Partici-
pation is a right as stipulated by the United Nations Convention
on the Rights of the Child yet is limited in children with phys-
ical disability. Recent studies have identified child and envi-
ronmental factors that can influence participation, and studies
are now underway to test intervention strategies to promote
greater participation. Quality of life is an outcome that comple-
ments more objective measures of impairment and activity lim-
itations, providing the child’s personal perspectives on their
health and well-being. New disease-specific measures and
determinants of quality of life have been described in this pop-
ulation of interest; however, specific interventions to enhance
life quality are needed.
In an effort to translate knowledge of key evidence-based
messages to child neurologists, the final paper highlights key
areas of scientific study that families may ask their neurologist
about such as diagnostic practices and intervention approaches,
and provides evidence-based answers to these questions.
Much has changed in this century in the care of children and
youth with cerebral palsy. There is greater attention to accurate
characterization of the child’s functioning and health and the
family’s perspectives and needs are prioritized. New rehabilita-
tion intervention approaches and technology applications are
now available with high-level evidence to support their effec-
tiveness. Focus is increasingly on participation, community
integration, and life quality in spite of deficits or disability.
These enormous efforts in rehabilitation are driven by one goal,
innovation toward better living for children and youth with
cerebral palsy and their families.
I am most indebted to the contributors of this special issue; all
international experts in the field. Their enthusiasm and com-
mitment to this ambitious project was exceptional, and their
personal dedication to optimizing the health and well-being
of children and youth with cerebral palsy is clearly palpable
in their manuscripts. It has been a pleasure to work with these
individuals on this special issue for the Journal of Child
Neurology.
This Issue: Dedicated to the LateDr. Roger Brumback
On February 15, 2013, Roger Brumback spoke to me by phone,
and asked that I guest edit a special issue on some aspects of
rehabilitation. He felt it was important for child neurologists
to be more aware and up to date on the scientific evidence
supporting rehabilitation, given that most of their patients ben-
efit from these interdisciplinary services. He also wanted
greater representation of rehabilitation professionals on his edi-
torial board and asked for suggestions. Although I had just
completed a book and vowed not to ‘go there’ again, I could not
say no to Roger. He supported the notion of a focus on rehabi-
litation advances as related to children with cerebral palsy and
then a team of international experts were rapidly assembled,
who were most keen to participate.
As founding editor of the Journal of Child Neurology, he was
forward-thinking, open to new ideas and perspectives, and
always optimistic and solutions-minded. As a person, he was
extremely warm and personable, and had an enormous generos-
ity of spirit. As an outsider to child neurology, he welcomed me
in. I feel privileged to have worked with Roger, socialized with
him and his wife, and learned from his thoughts and experiences.
Three months after our conversation, Roger and his wife
Mary tragically died. Unfortunately Roger did not see the
product of his idea, but his respectful and supportive nature
lives within this special issue.
2 Journal of Child Neurology
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