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2009

Endocrine Society includes puberty suppression in its guideline

The entrance to the Endocrine Society’s office building in Washington
Photo: ajay_suresh, CC BY 4.0, via Wikimedia Commons

In September 2009, the Endocrine Society, the international professional association for endocrinologists, published its first guideline for the hormonal treatment of transsexual people. For the first time, a major medical association recommended suppressing puberty in young people with gender dysphoria.

What the guideline recommends

The guideline advises treating young people who meet the criteria with GnRH agonists as soon as the first physical signs of puberty become visible. Sex hormones may follow at around the age of sixteen. For prepubertal children, the guideline advises against hormonal treatment.

The Dutch contribution

Three of the authors were based in Amsterdam: Peggy Cohen-Kettenis, Henriette Delemarre-van de Waal and Louis Gooren. The recommendations for young people follow the Dutch Protocol, which had been published three years earlier.

The quality of the evidence

The guideline itself assesses how strong the evidence behind each recommendation is. For the recommendations concerning young people, it is low or very low. Nevertheless, the authors considered the expected benefits to outweigh the risks.

The 2017 revision

A revised version was published in 2017. It dropped the fixed age of sixteen for sex hormones: in certain cases, the treatment team may start earlier. The assessment of the quality of the evidence remained unchanged.

What is the Endocrine Society

The Endocrine Society was founded in the United States in 1916 and is the world's largest association of hormone specialists, with members in more than one hundred countries. The association develops guidelines for a wide range of conditions, from diabetes to thyroid diseases. The 2009 guideline was also endorsed by European associations of endocrinologists and pediatric endocrinologists, as well as WPATH. As a result, the text had an international character from the outset.

Strong recommendation, weak evidence

The guideline uses a fixed method in which two things are assessed separately: how strong a recommendation is and how good the evidence behind it is. A recommendation can therefore be strong even when the evidence is weak, if the authors believe that the benefits clearly outweigh the disadvantages. That is the case with the recommendations concerning young people. Critics argue that a strong recommendation based on weak evidence can only be justified in exceptional situations, such as when lives are at risk, and that this is not the case here. The authors point out that not treating someone also has consequences, because puberty then continues.

How the guideline is used

In the United States, doctors, hospitals and insurers rely on the guideline to determine which care is provided and covered. In court cases concerning laws that prohibit treatment for minors, such as the Skrmetti case, both sides cite the text: one as evidence that the care is medically accepted, the other as evidence that its foundation is weak. The revised 2017 version itself states that the guideline does not establish a standard of care and does not replace the treating physician's judgment.

Significance

The guideline was published two years before the first outcomes of the Dutch treatment were published; see the 2011 outcome study. The recommendation was therefore based primarily on the description of the approach and on the experience of the Amsterdam clinicians.

This guideline turned puberty suppression from an Amsterdam-based approach into an international standard that doctors and insurers could rely on. Later assessments, such as the one for the Cass Review, indicate that guidelines in this area rely heavily on one another even though the underlying evidence is limited.

Sources