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Cerebral Palsy: Critical Elements of Care

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Cerebral Palsy: Critical Elements of Care Cerebral Palsy CRITICAL ELEMENTS OF CARE Produced by The Center for Children with Special Needs Children's Hospital and Regional Medical Center, Seattle, WA Fourth Edition, Revised 2/2006 The Critical Elements of Care (CEC) consider care issues across the life span of the child. The intent of the document is to educate and support those caring for a child with Cerebral Palsy. The CEC is intended to assist the Primary Care Provider in the recognition of symptoms, diagnosis and care management related to a specific diagnosis. The document provides a framework for a consistent approach to manage- ment of these children. These guidelines were developed through a consensus process. The design team was multidisciplinary with state-wide representation involving primary and tertiary care providers, family members, and a represen- tative from a health plan. Original Consensus Team: Leslie Babbitt, RD, MS Jean Popalisky, RN, MN Barbara Boldrin, RN Diana Sandoval, MS, OTR/L Charles Cowan, MD Pat Trulson, PHN Betsey Denonville, RN Stephanie Underwood, Parent Kathy Mullin, RN William Walker, MD Chris Olson, MD Technical Assistance: John (Jeff) McLaughlin, MD Content reviewed and updated 2/06: William Walker, MD DISCLAIMER: Individual variations in the condition of the patient, status of patient and family, and the response to treatment, as well as other circumstances, mean that the optimal treatment outcome for some patients may be obtained from practices other than those recommended in this document. This consensus based document is not intended to replace sound clinical judgement or individualized consulta- tion with the responsible provider regarding patient care needs. © 1997, 2002, 2006 Children’s Hospital and Regional Medical Center, Seattle, Washington. All rights reserved. TABLE OF CONTENTS CEREBRAL PALSY CRITICAL ELEMENTS OF CARE I. INTRODUCTION Definition and Diagnosis of Cerebral Palsy○○○○○○○○○○○○○○○○○○○○○○○○○○○ 1 Patterns of Cerebral Palsy○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 1 Causes of Injury○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 1 Associated Risks○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 2 Prognosis○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 2 Management of Cerebral Palsy○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 2 ○○○○○ Characteristics of Optimal Care○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 2 Interventions and Treatment○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 3 ○○○○○○○○○○○○○○○○○○○○○○○○○○○ Management Issues○○○○○○○○○○○○○ 3 II. GUIDELINES FOR CRITICAL ELEMENTS OF CARE○○○○○○○○○○○○○6 III. CRITICAL ELEMENTS OF CARE ○○○○○○○○○○○○○○○○○○○○○○○○○○○○7 (Ages 1 - 21 years) IV. QUICKCHECK WORKSHEET ○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○17 V. APPENDICES I. References and Resources Professional Reading List○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 18 Information and Organizations○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 18 ○○○○○ Periodicals○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 18 Reading List for Families○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ 19 I. INTRODUCTION TO CEREBRAL PALSY Cerebral palsy is an excellent example of a knowledge of normal motor development and its medical condition that requires competent, compre- variants. In all but the mildest cases, the diagnosis hensive, continuous, compassionate and commu- of cerebral palsy can be made by 12-18 months of nity-based care. It is critical that primary care age. A thorough search for etiologies is warranted providers (PCP) be involved and knowledgeable in the young child newly diagnosed with cerebral about the current and future care plan for the best palsy. This includes a thorough history and physical, outcome for each child. A team approach is re- plus follow-up observation of the progression of quired to develop this practice model. The team motor abilities at frequent intervals. Physicians members may include community service providers experienced with this disorder, such as developmen- such as public health departments, early intervention tal pediatricians, neurologists and geneticists, can be programs/schools or private therapy providers consulted to aid in the diagnosis. including occupational, physical and speech thera- To aid in confirming the diagnosis and ruling out pists. There is also a need for regional centers neoplastic or progressive causes for motor disability staffed by health professionals who have experience such as metabolic and neurodegenerative disorders, in the treatment and management of individuals with central nervous system imaging is usually indicated. cerebral palsy. The family is at the center of the Other diagnostic testing might include cultures, care team. immune status, metabolic screening, karyotyping, genetic probes or confirmatory tests for other What is Cerebral Palsy? specific disorders. EEGs, EMGs and skull films are not useful for the diagnosis of cerebral palsy or its Cerebral palsy is a group of disorders of move- etiology. ment and posture resulting from injury to the devel- oping central nervous system. The neurologic How are the Patterns of Cerebral Palsy De- impairment is nonprogressive, although secondary disability can occur. Characteristics of cerebral scribed? palsy change with developmental stages, especially Studies have demonstrated that injuries to certain in the first few years of life. This impairment and areas of the brain result in general patterns of resultant disability are both permanent. impairment. This observation has led to the "topo- ○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○○ graphical" descriptors of spastic forms of cerebral When is the "Developmental" Period? palsy such as hemiplegia, diplegia or quadriplegia, which are thought to be the result of pyramidal tract The developmental period is usually defined from the injury. Certain patient populations will be predis- time of conception to 12-24 months post-term birth. posed to a particular "type" of cerebral palsy, as in the case of premature infants and spastic diplegia. What is the Incidence of Cerebral Palsy? The extrapyramidal types of cerebral palsy (athetoid, The overall incidence in the past 20 years has dystonic, ataxic) will have some involvement of the remained rather stable at 2.0-2.5 per 1,000 live entire body. Many children have a "mixed" clinical births, resulting in 5,000 new cases of cerebral palsy picture, where both spastic and extrapyramidal in the United States every year. To the great features are present. frustration of parents and physicians, no specific What are the Causes of Injury in Cerebral etiology is found in 20-30 percent of these cases. Palsy? How is Cerebral Palsy Diagnosed? The causes may be prenatal (including genetic), The diagnosis of cerebral palsy is essentially perinatal or postnatal. Currently, the majority of clinical and is highly dependent on the physician's cases are prenatal, although the precise etiology ○○○○○○○○○○○○○○○○○○○○○○○○○○ Critical Elements of Care: Cerebral Palsy 1 I. Introduction to Cerebral Palsy often cannot be identified. This is true in 20-30 predictions about prognosis rarely can be absolute percent of cases. Perinatal asphyxia at or near term and outcomes should be carefully assessed. The causes, at most, 10-15 percent of cerebral palsy clinical evaluation of these children must be ongoing. cases. Many children with cerebral palsy appear to A changing clinical picture may be the natural have a "cascade" of harmful events that often begin progression of the primary injury, modified by in utero and continue during and after delivery. maturation of the central nervous system (i.e., increasing tone or spasticity), or it may be a "new" ○○○○○○○○○○○ Are There Associated Risks of Other Disabili- finding identified by assessment methods that are ties for the Child with Cerebral Palsy? age-dependent (delayed language or cognitive ○○○○ abilities). The clinical change may also be a result Yes, cerebral palsy is known to have a higher risk of the emergence of other associated deficits. The association with other disabilities. These risks progressive appearance of signs of cerebral palsy, include, but are not limited to: such as changes from hypotonia to spasticity, need seizures - 35-45% to be distinguishsed from progressive disorders such ○○○○○○○ mental retardation - 40-60% as those caused by metabolic, neoplastic or degen- erative disorders. visual deficits - 20-60% communication deficits, including hearing - 30% ○○○○ How Can the Child with Cerebral Palsy be feeding difficulties Managed? behavioral concerns The strategic goals in the management of cere- In children with cerebral palsy, multiple disabilities bral palsy are to enable the child to grow up in the tend to be the rule rather than the exception; 80 family and community and to achieve optimal percent will have at least one associated handicap, independence in adult life. Comfort and ease of while 40 percent will have three or more associated ○○○○○○○○○○○ care are additional valued goals. handicaps. Much of the tactical management of cerebral palsy is aimed at preventing cumulative secondary How is the Severity of Cerebral Palsy de- impairment and disability. Follow-up at regular scribed? intervals (directed at assessing motor and develop- mental progress) is essential in the optimal manage- The recently developed Gross Motor Functional ment of a child with cerebral palsy. Classification System for Cerebral Palsy (GMFCS) defines five levels of motor functionfor each age ○○○○○○○○○○○ The multi-faceted nature of cerebral palsy group (see references). This simple tool allows requires a comprehensive approach. No two cases different clinicians to describe the severity gross with cerebral
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