PEDIATRICS Vol. 123 No. 6 June 2009, pp. 1556-1561 (doi:10.1542/peds.2008-2951)
SPECIAL ARTICLE |
Growth-Attenuation Therapy: Principles for Practice
a Department of Pediatrics, University of Wisconsin School of Medicine and Public Health, Madison, Wisconsin
b Department of Pediatrics, University of Colorado School of Medicine, Denver, Colorado
c Department of Pediatrics, University of Washington School of Medicine, Seattle, Washington
Publication of an account of growth attenuation with high-dose estrogen in a child with profound physical and cognitive disability brought widespread attention to a common and complex issue faced by families caring for similarly affected children, namely, the potentially negative effect of the increasing size of a child on the ability of his or her family to provide independent care, which in turn makes it more difficult for parents to keep the child in the home and involved in family activities. In this article we explore the scientific rationale for, effectiveness and safety of, and ethical considerations bearing on growth-attenuation treatment of children with profound and permanent cognitive disability. Informed responses to key clinically relevant questions are proposed. Our analysis suggests that growth attenuation is an innovative and sufficiently safe therapy that offers the possibility of an improved quality of life for nonambulatory children with profound cognitive disability and their families. Pediatricians and other care providers should include discussion of these options as part of anticipatory guidance around the age of 3 years so that, if elected, potential clinically meaningful benefits of growth-attenuation therapy can be realized. Because of the publicity and debate surrounding the first reported case, ethics consultation is recommended.
Key Words: growth growth attenuation cognitive disability ethics
Abbreviations: GnRH—gonadotropin-releasing hormone ER—estrogen receptor
Accepted Oct 28, 2008.
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