Growth Hormone Treatment for Short Kids
Many people associate height with power; it seems like our country likes its business and political leaders tall. In that way, culturally speaking, height matters. But aside from the stereotypes linked with tall or short stature, what does research tell us about how well people with short stature are doing?
I have conducted psychological research in clinics where children and adolescents receive medical evaluations for short stature. This research confirmed what doctors and psychologists long suspected: that being short is linked to getting teased and being treated as younger than you are. (1, 2) The research also showed that very short young people were doing as well as their peers in terms of school performance, peer relations, behavioral and emotional functioning, and self-esteem.
The finding that these young people were getting teased, but were doing well socially and emotionally surprised me. So we took the research out of the clinical setting and into the general population. We studied the effect height has on a child’s reputation, likeability, and friendships among children in grades 6 to 12. We did not detect any relationships between a child’s height (whether short, average, or tall) and their friendships, popularity, or reputation with peers. (3) In other words, short students (including those measuring at or below the 1st percentile for the general population) had no different a social reputation among their peers than those who were taller. Not only did these very short kids have as many friends, they had as many close friends who were tall and average-height as short friends. Against expectations, we also found that whether the student was a boy or a girl did not make their height more or less important in the school social context. We did discover one interesting finding related to height: students who were markedly shorter than their peers in the early grades were perceived by classmates to be younger than their age. This did not affect the short child’s social acceptance or reputation with peers. And by grades 11 and 12, this effect was far weaker. We concluded from this study that height, just by itself, tells us little about how the child or adolescent adjusts in the peer group.
Good news, right? Although these findings were surprising at first, they are in line with many studies that show how young people are generally resilient when facing serious, even life-threatening medical problems or other adversities. The majority of all children do well in the face of challenges as long as they have a supportive family and the ability to problem solve.
Until research findings such as these were available, it was easy to assume that anything that could make the shorter person taller would be desirable, because of commonly accepted negative stereotypes associated with short stature and predictable experiences of teasing and juvenilization at younger ages,. In fact, in 2003, the FDA approved growth hormone (GH) to promote accelerated growth and adult height in the shortest 1.2% of children and adolescents who do not have any detectable medical problems. GH had previously been approved for treating youths with GH deficiency; in this case, medication was substituting for a hormone that these children’s bodies were not producing on their own. GH was then given to children with other medical conditions; for example, Prader-Willi in which metabolic benefits from treatment have been reported.
The 2003 decision, however, is somewhat puzzling. Regarding medications, the FDA’s purpose is to review the safety of medications; not judge why a person would want to take it in the first place. It did not appear to take research on psychological functioning and quality of life of individuals with short stature into account when approving this most recent indication for GH. In fact, to date, there is not a single scientific study that convincingly demonstrates a psychological benefit in either the short or long term from height gain due to GH treatment. In case you’re curious, on average, GH will make the short but otherwise healthy child taller in adulthood than they would otherwise be by approximately 1.6 to 2.4 inches after an average of 5 years treatment – that means some children will gain more than that; other children less.
Aside from the lack of evidence for a psychological benefit of GH, are there any other drawbacks of treatment? The FDA considered GH to be acceptably safe during the course of treatment. But keep in mind that the approved dosage of GH pushes concentrations in the body beyond what is normal. And the long-term risks of this practice remain uncertain. But, is any risk to healthy children permissible when there is no evidence of benefit? Or is anything better than being short? The treatment does not come cheap or easy. In fact, a 2006 study calculated the average cost per inch of gained height to be over $52,000.(4) With the average total gain of 1.9 inches, that’s nearly $100,000 per kid. Plus, it’s not a treatment regimen to take lightly; GH therapy involves an injection every day for many years.
When the FDA approved GH for use this way, it only looked at whether the treatment made kids taller. The FDA isn’t the only one to confuse height and quality of life. In my experience, parents, patients, doctors, psychologists, and the general public do it all the time. Using GH to treat shortness is basically using it as a quality of life therapy (with unproven effectiveness). In spite of that, kids receiving the treatment rarely get evaluated to see if they have psychosocial problems that would warrant GH treatment in the first place. When a very short child is, in fact, experiencing psychosocial problems, height is commonly assumed to be the cause, but it might not be. Identifying children who experience shortness as a “disability” has proved a challenging task. Psychosocial stress is common in childhood. The fact that a young person gets teased, or gets treated as younger than they are, or even that the family is bringing the child to a pediatric endocrinologist to talk about growth-promoting therapies is not enough to make this call. Shortness can too easily become a scapegoat and distract us from the real causes of kids’ psychological and social stresses.
My concern over the FDA approval of GH for healthy, short children is that medical treatment may send the wrong message. You possibly communicate to the child that something is wrong—so wrong that it justifies daily injections for years. Currently, little to no consideration is given to the potential psychological harm that treatment could inflict on the child we seek to help. And by “treating” short stature in healthy children, medicine is reinforcing the social forces that maintain negative stereotypes about short people. (5) There will always be individuals below any cutoff adopted to set the limit between “normal” from “abnormal” height. Therefore, even if the individual with short stature were to receive psychosocial benefit from GH (a benefit that has not been demonstrated), it is only because others remain shorter.
Over time, more and more treatments will blur the line between what we consider medically necessary versus enhancement. In deciding how to use these treatments, we need to focus on evidence, like patient-reported quality of life—especially when treating young people who rely on their parents and healthcare professionals to make proper decisions on their behalf.
~ David E. Sandberg, Ph.D. April 2007
Table. Assumptions underlying growth-promoting therapies A more complete discussion of the evidence upon which this table is based can be found in references (6, 7)
|Assumption Underlying Rationale for Treating SS with rhGH||Evidence|
|Patients with short stature experience chronic psychosocial stress||Supported by clinic-based studies|
|Patients with short stature exhibit clinically significant problems of psychosocial adaptation||Not generally supported|
|Short youths and adults in the general population (i.e., those not referred for growth evaluation) are similarly at risk for problems of social adjustment||Not supported in children, adolescents or adults|
|Stature-related social stress results in significant problems of psychosocial adjustment||Limited support: though teasing and juvenilization were related to behavior problems, overall psychosocial adaptation was equivalent to community norms|
|Increases in growth velocity and height induced by GH therapy result in improved quality of life||Not supported|
Size Matters: How Height Affects the Health, Happiness, and Success of Boys—and the Men They Become, by Stephen S. Hall.
Read a review of this book here.
(1) Sandberg DE, Brook AE, Campos SP. Short stature: a psychosocial burden requiring growth hormone therapy? Pediatrics 1994; 94:832-840.
(2) Sandberg DE, Michael P. Psychosocial stresses related to short stature: does their presence imply psychiatric dysfunction? In: Drotar D, editor. Assessing Pediatric Health-Related Quality of Life and Functional Status: Implications for Research. Mahwah, NJ: Lawrence Erlbaum Associates, 1998: 287-312.
(3) Sandberg DE, Bukowski WM, Fung CM, Noll RB. Height and social adjustment: Are extremes a cause for concern and action? Pediatrics 2004; 114(3):744-750.
(4) Lee JMM, Davis MMM, Clark SJM, Hofer TPM, Kemper ARM. Estimated cost-effectiveness of growth hormone therapy for idiopathic short stature. Archives of Pediatrics & Adolescent Medicine 2006; 160(3):263-269.
(5) Sandberg DE, Colsman M, Voss LD. Short stature and quality of life: A review of assumptions and evidence. In: Pescovitz OH, Eugster E, editors. Pediatric Endocrinology: Mechanisms, Manifestations, and Management. Philadelphia, PA: Lippincourt, Williams & Wilkins, 2004: 191-202.
(6) Sandberg DE, Colsman M. Assessment of psychosocial aspects of short stature. Growth, Genetics & Hormones 2005; 21(2):18-25.
(7) Sandberg DE, Colsman M. Growth hormone treatment of short stature: status of the quality of life rationale. Hormone Research 2005; 63(6):275-283.
Updated July 2009