Journal http://jcn.sagepub.com/ of Child Neurology
Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View Annette Majnemer J Child Neurol published online 27 May 2014 DOI: 10.1177/0883073814535505 The online version of this article can be found at: http://jcn.sagepub.com/content/early/2014/05/27/0883073814535505
Published by: http://www.sagepublications.com
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Brief Communication
Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View
Journal of Child Neurology 1-2 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0883073814535505 jcn.sagepub.com
Annette Majnemer, OT, PhD1, Guest Editor
Received April 08, 2014. Received revised April 08, 2014. Accepted for publication April 09, 2014.
Introductory Comments: Innovation Toward Better Living There have been many important advances in the field of rehabilitation science at multiple levels, to include more holistic conceptual frameworks, better understanding of underlying 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 important 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 Classification 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 measures that broadly include aspects of the child as well as relevant contextual factors that influence functioning should be considered. Furthermore, family and child perspectives (eg, patientreported 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 rehabilitation interventions have moved beyond impairment-based approaches (ie, to normalize or fix deficits) to promoting activity and participation, with a focus on modifying the task and environment in addition to or instead of strategies at the impairment level. Factors such as family-centered care, the International Classification of Functioning, Disability and Health, new outcome measures and new theoretical constructs (all described in papers in this special issue) have greatly influenced this shift in rehabilitation focus. This issue describes 3 important treatment approaches: intensive upper extremity training (constraint-induced movement therapy, bimanual hand arm training), botulinum neurotoxin A as an adjunct to upper limb rehabilitation, and physical activity training. Intensive repetitive upper limb training for children with hemiplegia, whether unimanual or bimanual, attains important functional gains over traditional approaches. Botulinum neurotoxin A injections can temporarily 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 isolation; 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, muscle 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]
Downloaded from jcn.sagepub.com at UNIVERSITE LAVAL on July 14, 2014
2
Journal of Child Neurology
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. Augmentative 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 perform activities, typically in a game format, that promote rehabilitation 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. Participation is a right as stipulated by the United Nations Convention on the Rights of the Child yet is limited in children with physical disability. Recent studies have identified child and environmental 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 complements more objective measures of impairment and activity limitations, 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 population 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 rehabilitation intervention approaches and technology applications are now available with high-level evidence to support their effectiveness. 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 commitment 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 Late Dr. 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 benefit from these interdisciplinary services. He also wanted greater representation of rehabilitation professionals on his editorial 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 rehabilitation 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 generosity 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.
Downloaded from jcn.sagepub.com at UNIVERSITE LAVAL on July 14, 2014
Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View Annette Majnemer J Child Neurol published online 27 May 2014 DOI: 10.1177/0883073814535505 The online version of this article can be found at: http://jcn.sagepub.com/content/early/2014/05/27/0883073814535505
Published by: http://www.sagepublications.com
Additional services and information for Journal of Child Neurology can be found at: Email Alerts: http://jcn.sagepub.com/cgi/alerts Subscriptions: http://jcn.sagepub.com/subscriptions Reprints: http://www.sagepub.com/journalsReprints.nav Permissions: http://www.sagepub.com/journalsPermissions.nav
>> OnlineFirst Version of Record - May 27, 2014 What is This?
Downloaded from jcn.sagepub.com at UNIVERSITE LAVAL on July 14, 2014
Brief Communication
Innovation in the Rehabilitation of Children With Cerebral Palsy: A 21st-Century View
Journal of Child Neurology 1-2 ª The Author(s) 2014 Reprints and permission: sagepub.com/journalsPermissions.nav DOI: 10.1177/0883073814535505 jcn.sagepub.com
Annette Majnemer, OT, PhD1, Guest Editor
Received April 08, 2014. Received revised April 08, 2014. Accepted for publication April 09, 2014.
Introductory Comments: Innovation Toward Better Living There have been many important advances in the field of rehabilitation science at multiple levels, to include more holistic conceptual frameworks, better understanding of underlying 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 important 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 Classification 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 measures that broadly include aspects of the child as well as relevant contextual factors that influence functioning should be considered. Furthermore, family and child perspectives (eg, patientreported 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 rehabilitation interventions have moved beyond impairment-based approaches (ie, to normalize or fix deficits) to promoting activity and participation, with a focus on modifying the task and environment in addition to or instead of strategies at the impairment level. Factors such as family-centered care, the International Classification of Functioning, Disability and Health, new outcome measures and new theoretical constructs (all described in papers in this special issue) have greatly influenced this shift in rehabilitation focus. This issue describes 3 important treatment approaches: intensive upper extremity training (constraint-induced movement therapy, bimanual hand arm training), botulinum neurotoxin A as an adjunct to upper limb rehabilitation, and physical activity training. Intensive repetitive upper limb training for children with hemiplegia, whether unimanual or bimanual, attains important functional gains over traditional approaches. Botulinum neurotoxin A injections can temporarily 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 isolation; 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, muscle 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]
Downloaded from jcn.sagepub.com at UNIVERSITE LAVAL on July 14, 2014
2
Journal of Child Neurology
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. Augmentative 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 perform activities, typically in a game format, that promote rehabilitation 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. Participation is a right as stipulated by the United Nations Convention on the Rights of the Child yet is limited in children with physical disability. Recent studies have identified child and environmental 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 complements more objective measures of impairment and activity limitations, 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 population 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 rehabilitation intervention approaches and technology applications are now available with high-level evidence to support their effectiveness. 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 commitment 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 Late Dr. 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 benefit from these interdisciplinary services. He also wanted greater representation of rehabilitation professionals on his editorial 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 rehabilitation 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 generosity 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.
Downloaded from jcn.sagepub.com at UNIVERSITE LAVAL on July 14, 2014
