innovation toward better living

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http://jcn.sagepub.com/ Journal of Child Neurology http://jcn.sagepub.com/content/early/2014/05/27/0883073814535505 The online version of this article can be found at: DOI: 10.1177/0883073814535505 published online 27 May 2014 J Child Neurol Annette Majnemer Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View Published by: http://www.sagepublications.com can be found at: Journal of Child Neurology Additional services and information for http://jcn.sagepub.com/cgi/alerts Email Alerts: http://jcn.sagepub.com/subscriptions Subscriptions: http://www.sagepub.com/journalsReprints.nav Reprints: http://www.sagepub.com/journalsPermissions.nav Permissions: What is This? - May 27, 2014 OnlineFirst Version of Record >> at UNIVERSITE LAVAL on July 14, 2014 jcn.sagepub.com Downloaded from at UNIVERSITE LAVAL on July 14, 2014 jcn.sagepub.com Downloaded from

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Page 1: Innovation Toward Better Living

http://jcn.sagepub.com/Journal of Child Neurology

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  

Published by:

http://www.sagepublications.com

can be found at:Journal of Child NeurologyAdditional services and information for    

  http://jcn.sagepub.com/cgi/alertsEmail Alerts:

 

http://jcn.sagepub.com/subscriptionsSubscriptions:  

http://www.sagepub.com/journalsReprints.navReprints:  

http://www.sagepub.com/journalsPermissions.navPermissions:  

What is This? 

- May 27, 2014OnlineFirst Version of Record >>

at UNIVERSITE LAVAL on July 14, 2014jcn.sagepub.comDownloaded from at UNIVERSITE LAVAL on July 14, 2014jcn.sagepub.comDownloaded from

Page 2: Innovation Toward Better Living

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

at UNIVERSITE LAVAL on July 14, 2014jcn.sagepub.comDownloaded from

Page 3: Innovation Toward Better Living

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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