Growth-Attenuation Therapy: Principles for Practice

Abstract

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.

Growth attenuation therapy for children with severe physical and cognitive disability: Practice and perspectives of New Zealand paediatricians

“…There are currently no legal or clinical guidelines for GAT in NZ, and controversy surrounding GAT remains, involving issues of disability rights, parental autonomy and the best interests of the child . Different countries and even different clinicians take different approaches to managing the tension between the differing viewpoints on GAT . In Australia, it has been suggested that GAT is not legal unless a court order authorising the violation of a child's bodily integrity as part of non‐therapeutic treatment is granted .…”

“…As a few respondents commented, more information and evidence on GAT would be beneficial to aid informed discussion and decision making. More evidence could be obtained with the creation of a registry, which would facilitate the documentation of benefits and adverse events, as well as the comparison of the effects of different treatment regimens …”

“…4 Different countries and even different clinicians take different approaches to managing the tension between the differing viewpoints on GAT. 5,8,10 In Australia, it has been suggested that GAT is not legal unless a court order authorising the violation of a child's bodily integrity as part of non-therapeutic treatment is granted. 7 As a few respondents commented, more information and evidence on GAT would be beneficial to aid informed discussion and decision making.…”

“…3,7 Contentious issues involved with GAT include: determining what is best for individual disabled children; the extent to which parents, doctors or even courts are entitled to make these decisions; and the threshold of cognitive and physical disability that might qualify a child for GAT; some sources have recommended that GAT should only be considered for children with severe cognitive and physical disability. 2,[8][9][10] Although there are anecdotal reports and discussions of ethical issues related to GAT in the literature, there is little formal empirical evidence concerning efficacy or side effects. 10 In addition, the current literature provides little guidance on how to actually perform GAT, including basic issues such as duration of therapy (in the authors experience approximately 24-36 months), choice of gender steroid and route of administration (cutaneous vs oral).…”

“…Despite these perceived advantages, there is considerable ethical controversy regarding GAT, with opposition from advocates for the rights of people with disability and some health professionals . Contentious issues involved with GAT include: determining what is best for individual disabled children; the extent to which parents, doctors or even courts are entitled to make these decisions; and the threshold of cognitive and physical disability that might qualify a child for GAT; some sources have recommended that GAT should only be considered for children with severe cognitive and physical disability …”