declineinfunction1

declineinfunction1 - NeuroRehabilitation 19 (2004) 6978 IOS...

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NeuroRehabilitation 19 (2004) 69–78 69 IOS Press Decline in function and life expectancy of older persons with cerebral palsy David Strauss a , , Kelly Ojdana a , Robert Shavelle a and Lewis Rosenbloom b a University of California Life Expectancy Project, 1439 – 17th Avenue, San Francisco, CA 94122-3402, USA b Royal Liverpool Children’s NHS Trust, Eaton Road, Liverpool L12 2AP, UK Abstract . The authors studied the pattern of functional abilities and decline of skills in adults with cerebral palsy. The data source was the California Developmental Disabilities data base, which included 904 subjects of age 60. For those individuals who are mobile when they become adults, there is a marked decline in ambulation, especially in late adulthood, and few of the 60 year-olds who walked well preserved this skill over the following 15 years. Older subjects frequently also lost the ability to dress themselves. Many other skills, however, seemed to be well preserved, including speech, self-feeding and the ability to order meals in public. Whereas the great majority of young adults lived in their families’ home or in small private group homes, 18% of the 60 year-olds lived independently or semi-independently, and 41% resided in facilities providing a higher level of medical care. Survival rates of the ambulatory older adults were only moderately worse than the general population. Survival was, however, much poorer among those who had lost mobility. Keywords: Cerebral palsy, adults, activities of daily living, mortality, survival, decline in function 1. Introduction Much of the emphasis in cerebral palsy (CP) is on the pediatric aspects. Quite properly, great attention is paid to therapies to maximize the child’s potential for speech, ambulation and other functions. There is a large literature on medical conditions of children with cerebral palsy. Researchers have studied the develop- mental trajectory of children with CP, considering ques- tions such as the child’s chance of learning to walk [30]. There is also a considerable literature from around the world on survival of children and young adults with CP [7,12,16,20–22,38,40]. By comparison, there has been less attention paid to adults and elderly persons with CP. The subject is important because such persons are subject to various medical conditions that are uncommon in children [6, 18,28], and because they are apt to lose some of the Address for correspondence: David Strauss, Ph.D., F.A.S.A., University of California Life Expectancy Project, 1439 17th Avenue, San Francisco, CA 94122-3402, USA. Tel.: +1 415 731 0250; Fax: +1 415 731 0290; E-mail: Strauss@LifeExpectancy.com. functional abilities acquired in childhood [3,8,18,27– 29,43]. We have noticed that personal web sites created by those with cerebral palsy lament the lack of infor- mation available on what can be expected as they age. The research that has been published on such questions
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declineinfunction1 - NeuroRehabilitation 19 (2004) 6978 IOS...

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