Cerebral Palsy: Science and Clinical Practice Edited by, , , and
Book Review by Michael E Msall
Comer Children’s Hospital, JP Kennedy Research Center on Intellectual and Developmental Disabilities, University of Chicago-Medicine, Chicago, IL, USA
Published in Developmental Medicine and Child Neurology, April 2015
The science of cerebral palsy (CP) involves systematically discovering knowledge that informs strategies for preventing, diagnosing, habilitating, managing, and enabling children with a spectrum of developmental brain dysfunction across their life course. Though oral motor, fine motor, or gross motor delays are the initial concerns, there are dynamic long-term impacts on growth, neurosensory functioning, and neurodevelopmental activities. Over the past two decades there have been major advances in understanding causal pathways, designing neuroprotective clinical trials for children who were born very prematurely (<32wks gestational age) or born at term with neonatal encephalopathy, and understanding evidence-based interventions that optimize gait, strength, manual skills, and communication.[1, 2]
In examining outcomes, there has been an increased emphasis on developing appropriate measures that inform health professionals about the current status of mobility, manipulative, communicative, feeding, and self-care daily living functions as well as quality of life.[3, 4] This has occurred in a setting whereby our management paradigm has shifted from technical outcomes on a body structure level to embracing the International Classification of Functioning, Disability and Health (ICF) domains of functioning and participation, and organizing our delivery systems around family-centered care over the life course. The field has also benefited enormously from the current efforts of population surveillance registries, in Australia, Europe, and North America with uniform descriptions of antecedents, confounders, and consequences, with increasing linkages to biomarkers and neurometrics. To address the dynamic, changing epidemiology and clinical management science of the CP syndromes, an interdisciplinary approach is required that integrates science, clinical care, multidimensional outcomes, and advocacy over the life course.
It is in this context that the book Cerebral Palsy: Science and Clinical Practice is a critically needed reference for interdisciplinary health professionals. It is because of the complexity and diversity of how individuals with CP develop and function in the setting of known and unknown developmental brain disorders that this textbook is exemplary. The multidisciplinary editors represent the diverse core areas of pediatric epidemiology, physical therapy and rehabilitation sciences, and child neurology with experience in community management of developmental disabilities. Importantly, the invited contributors include not only multiple medical, rehabilitation, psychological, and research professionals but also include perspectives of adults with CP.
The editors have elegantly organized this book into four major sections. Section one is entitled Concepts, Natural History, and Global Perspectives. The first chapter by John Mantovani and David Scrutton is entitled Historical Perspective and is essential reading to understand that the state of science and clinical care has gone beyond simplistic unitary causal models or single discipline management modalities. Peter Rosenbaum’s chapter on definition and clinical classification systematically describes the power of the ICF model. In conjunction with the chapter on parenting, the writing demonstrates how the ICF family-centered approach emphasizing strengths is critical to child, caregiver, and adult well-being. Other chapters in this section include the personal narratives of three individuals, one from the UK, a second from South Africa, and a third from the US, describing the value of enablement and community supports that respect individuals with CP and address barriers to participation in health, education, community, and employment roles. Chapters in this section also recognize that there are more adults with CP between the ages of 21 and senior years than children with CP and that there are more individuals in developing economies than in developed economies who have no access to integrated systems of health, rehabilitation, education, and family supports. In all these chapters, the articles are well written and well edited. The tables are masterful, and the references are current and include informed ethical websites for families and professionals.
Section two involves seven chapters and is entitled Pathways to Cerebral Palsy. Most noteworthy is the chapter by Floyd Gilles and Marvin Nelson, Regional Functional Brain Malformations and Motor Impairment, which reviews the critical contributions of brain development as well as some of the more severe disorders that are now detected on neuroimaging such as lissencephaly, pachygyria, polymicrogyria, and schizencephaly. Most importantly, Janet Rennie and Nicola Robertson’s chapter Pathways Involving Hypoxia-Ischaemia summarizes the state of science and current neuroprotective clinical trials for modifying the pathways involving hypoxemic-ischaemic encephalopathy as well as gaps between scientific evidence and medical evidence during litigation.
Importantly, this section recognizes that the causal pathways involving individuals with CP starting very early on are multi-factorial and are predominantly unknown. It is in this respect that perinatal stroke, maternal-fetal infection, bilirubin and neurotoxicity, endocrine pathways, and non-inflammatory and non-endocrine pathways in prematurity are highlighted. As I read this section, it was continually apparent that we are witnessing fundamental advances in developmental biology, neuroscience, and rehabilitation science, and this knowledge will have dramatic impacts on addressing the current gaps in our understanding of timing and our ability to comprehensively promote and measure neuroplasticity and neurorestoration.
Section three is entitled Diagnosis and Principles of Intervention. Hans Forssberg’s chapter on the Neural Basis of Motor Control summarizes the state of the science of motor learning, and activity-dependent plasticity. Lucinda Carr rightly points out that the pathways for identifying the majority of children with CP go beyond the neonatal intensive care nursery and beyond individuals with neonatal encephalopathy. She emphasizes the importance of recognizing the red flags of parental concerns, the critical importance of being non-judgmental and supportive, and the importance of recognizing comorbidities and potential mimickers of CP. The chapter on neuroimaging is comprehensive and well illustrated, and sets the stage for the reader to understand that advances in neuroimaging will help us better understand fetal developmental origins, functional connectivity, and neuroplasticity. These exciting scientific chapters then set the stage for a series of comprehensive interdisciplinary assessment chapters involving Clinical Neurophysiology, Orthopaedic Assessment, and Motion Analysis. These are masterful in providing a comprehensive perspective essential for understanding electroencephalography, musculoskeletal deformity, and gait analysis. The remaining chapters in this section are a must-read for all health and rehabilitation professions: Margaret Mayston’s Intervention Planning, Implementation, and Evaluation; Claire Davies’ Enhancing Activity and Participation with Assistive Technology; and Peter Rosenbaum and Christopher Morris’s Resources for People with Cerebral Palsy and their Families. Through these chapters, clinicians will realize the critical importance of having flexible tool kits of assessment that can be linked to management goals that are SMART: specific, measurable, achievable, and time-limited; and that families benefit from information, peer support, and becoming informed about critical appraisal so that they can take advantage of evidence-based interventions.
The fourth section is entitled Optimizing Activity and Participation. It is in this section that the ICF Family-Centered Model demonstrates its value. The chapter on lower-limb function by Pam Thomason, Jill Rodda, Kate Willoughby, and Kerr Graham superbly describes the life-course issues in managing and preventing musculoskeletal deformities and promoting both body structure and function. They elegantly summarize longitudinal management across Gross Motor Function Classification System (GMFCS) levels I, II, III, IV, and V for individuals with unilateral or bilateral CP. This chapter alone should be required reading by all interdisciplinary professionals. Additional core chapters in this section include optimizing postural control, oromotor function, hand function, muscle tone, strength, and movement. These chapters should not only be read by specific medical and rehabilitation disciplines but are extremely valuable for synthesizing comprehensive clinical management approaches that promote functioning and participation. Noteworthy is that this section not only includes gross, fine, and oral motor skill function management strategies but also has important and well-written chapters on cognitive, visual, auditory, and communication functioning. The state of clinical science is included in the chapters on epilepsy, the neural basis of motor control, and neuroimaging. Both physical, behavioral, and social health function and well-being are addressed in sleep, nutrition, respiratory and urinary function. Most importantly, behavioral health and sexual health have their own chapters. It is in this last chapter on sexuality that one appreciates the advances that have been occurring in living a life with CP in all aspects of human activity.
The Appendices are extremely well organized and can be viewed as a repository of the useful classification tools for gross motor, manual, communication, and feeding activities.
So where does this leave us? We have gone beyond simplistic causal pathways, multiple birthday surgeries, and debates about philosophical schools for motor management. This book has embraced advances in science and management and uses a combined family-centered and ICF approach. It readily builds on both Majnemer’s textbook on ICF-CY measures, Ronen and Rosenbaum’s Life Quality Outcomes, and the handbook for parents by Rosenbaum and Rosenbloom.
Why should one purchase this book? First, it is comprehensive. It easily addresses the major themes and issues in a whole-person framework. Secondly, it is interdisciplinary. In this era of complex management, it is only through evidence-based interdisciplinary science that we will begin to strategically improve outcomes across populations. Third, it is a resource to help life course management. It has elegantly summarized both the state of the science as well as the emerging scientific, medical, rehabilitation, and policy advances. Its major value is to emphasize both what is known and the challenges of using both our science and care to enhance function and participation across the life course.
What are additional strengths of this book? First, it is a bargain at its current size and framework. Second, each of the authors has used people-first language and appropriate terminology. Third, the authors appropriately recognize that the field is continually changing. It is in this respect that they anticipate that with advances in genomics, neuroscience, rehabilitation, and population health we can more comprehensively devise prevention and management practices that optimize function, community participation, and well-being.
How could this book be improved? First, though the ICF model and the family-centered approaches are quite important, additional tools such as the American Association on Intellectual and Developmental Disabilities (AAIDD) Supports Intensity Scale would also be helpful. Second, the time is right for creating networks of basic, clinical, and translational science similar to those that dramatically advanced the care of children with leukemia or cystic fibrosis. In these disorders, a combination of registries, support for science, and clinical networks has resulted in dramatically improved outcomes. We also need to build on the information and connectivity revolution so that individuals with CP and their caregivers can report outcomes that can be linked to surveillance registries trajectories of physical, behavior, and social health. Most importantly, we need a better understanding on a population basis of who has successfully lived with CP and despite their motor assets and challenges are participating in the world of higher education, independent-living, gainful employment, family formation, and civic life. These suggestions are not really a critique but a call to action to implement the best of science and clinical care in the tradition of Hilary Hart who did so much to add this textbook to the Mac Keith Press collection. It is she who recognized the value of taking our science and clinical efforts to advance the care, outcomes, and partnerships of individuals with CP. I recommend this book with the highest enthusiasm and I anticipate that it will become a most valued reference.