Cerebral palsy and aging

Authors

  • PETERSON HAAK BS,

    1.  Department of Epidemiology, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
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  • MADELEINE LENSKI MSPH,

    1.  Department of Epidemiology, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
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  • MARY JO COOLEY HIDECKER PHD,

    1.  Department of Epidemiology, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
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  • MIN LI PHD,

    1.  Department of Sociology and Anthropology, Youngstown State University, Youngstown, OH, USA.
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  • NIGEL PANETH MD MPH

    1.  Department of Epidemiology, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
    2.  Department of Pediatrics and Human Development, College of Human Medicine, Michigan State University, East Lansing, MI, USA.
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  • *

    Arnold Werner MD (1939–2007), an outstanding psychiatrist and a professor at Michigan State University, who had spastic diplegia that worsened considerably in his sixties, did much to raise national consciousness in the US on the importance of addressing CP in adult life.

  • ACKNOWLEDGMENTS
    It is encouraging to note that two recent workshops in the USA supported by the Cerebral Palsy International Research and Education Foundation (formerly the United Cerebral Palsy Research and Education Foundation) have addressed issues of prevention and treatment of functional abilities in adults with CP, including the Arnold Werner* Workshop in May 2008 at Michigan State University and the meeting in conjunction with the American Academy for Cerebral Palsy and Developmental Medicine in September 2008 in Atlanta. Continued recognition of the research and medical needs of adults with CP will hopefully spur new and rigorous longitudinal studies of functional abilities that can inform preventive and management approaches to aging with CP.

    Mr. Haak was supported by NIH Fellowship No 05 T32HD046977-04. Dr. Hidecker was supported by NIH/NIDCD Fellowship No F32 DC08265.

  • CONFLICTS OF INTEREST
    The authors declare no conflicts of interest.

Nigel Paneth at Department of Epidemiology and Department of Pediatrics and Human Development, College of Human Medicine, Michigan State University, East Lansing, MI, USA. E-mail: paneth@msu.edu

Abstract

Cerebral palsy (CP), the most common major disabling motor disorder of childhood, is frequently thought of as a condition that affects only children. Deaths in children with CP, never common, have in recent years become very rare, unless the child is very severely and multiply disabled. Thus, virtually all children assigned the diagnosis of CP will survive into adulthood. Attention to the adult with CP has been sparse, and the evolution of the motor disorder as the individual moves through adolescence, young adulthood, middle age, and old age is not well understood. Nor do we know what happens to other functional domains, such as communication and eating behavior, in adults with CP. Although the brain injury that initially causes CP by definition does not progressively worsen through the lifetime, the effects of CP manifest differently throughout the lifespan. The aging process must inevitably interact with the motor disorder, but we lack systematic, large-scale follow-up studies of children with CP into adulthood and through adulthood with thorough assessments performed over time.

In this paper we summarize what is known of the epidemiology of CP throughout the lifespan, beginning with mortality and life expectancy, then survey what is known of functioning, ability, and quality of life of adults with CP. We conclude by describing a framework for future research on CP and aging that is built around the World Health Organization’s International Classification of Functioning, Disability, and Health (ICF) and suggest specific tools and approaches for conducting that research in a sound manner.

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