BSPED “Guidelines for the Management of Gender Identity Disorder (GID) in Adolescents and Children” – A Commentary

BSPED Announcement

British Society for Endocrinology and Diabetes (BSPED) has confirmed that its Executive Committee has removed the opening statement “Specific Endocrinological Guidelines approved by the British Society for Paediatric Endocrinology and Diabetes” from the Guidelines it published in 2004.

BSPED has also removed the Guidelines from the public pages on its website. In their place is the following announcement:

«Guidelines for the management of Gender Identity Disorder (GID) in Adolescents and Children – These guidelines are currently being renewed and ratified. It is the BSPED view that this condition should only be managed by appropriately experienced multidisciplinary teams.»

Introduction

Transsexual people often regret that they were not treated at the onset of puberty, when they experienced intense stress as their bodies began to develop in conflict with their innate gender identities. During puberty, young transsexual men develop breasts and start to menstruate. Young transsexual women’s voices deepen, they grow beards, develop prominent Adam’s apples and experience erections. Some of these physical changes result in permanent visible and audible signs of their transsexual histories that disadvantage them throughout their lives.

Guidance published in 1998 by the Royal College of Psychiatrists (RCP) and Standards of Care published in 2001 by the World Professional Association of Transgender Health (WPATH) both permit the administration of hormone blockers to suspend puberty at Tanner Stage Two in adolescents experiencing profound and persistent gender dysphoria. That relieves the adolescent’s immediate distress and gives more time for diagnosis before the development of unwanted secondary sex characteristics that are difficult or even impossible to correct. The BSPED document, published in 2005, is materially different from its two predecessors. It states unequivocally that blockers should not be offered until Tanner Stage Four/Five, after all pubertal development has been completed.

GIRES does not in any way doubt the professional competence and sincerity of the BSPED Committee or the authors of its Guidelines. GIRES intends only to suggest that important factors may have been overlooked or unknown at the time that the Guidelines were published.

The BSPED Guidelines are experimental, as is all current clinical practice in the treatment of gender dysphoric adolescents. They do not contain the high quality of evidence needed to drive a significant change in practice compared to that previously endorsed by the RCP and WPATH documents. Moreover, they do not appear to have been subjected to objective ethical scrutiny prior to publication.

Whereas the RCP and WPATH documents were prepared by large multidisciplinary teams (respectively 12 and 17 clinicians, all of whom had extensive relevant experience) the BSPED Guidelines were prepared by only three authors, all practising the discipline of paediatric endocrinology, of whom only two work with gender dysphoric adolescents. None of the clinicians in other countries who have relevant, substantial and authoritative expertise, including those involved in the preparation of the RCP and WPATH documents, is included in the list of authors. Neither is any mental health professional included, even though the diagnosis of whether a patient is experiencing profound gender dysphoria and the prediction of its likely persistence depend on psychological assessment.

One of the authors was a member of BSPED’s Committee. It is not apparent whether that person was properly distanced from the Committee when it undertook what should have been an objective assessment of the merits of the Guidelines.

In respect of the timing of hormone blocking medication, the BSPED approach is based on the belief that innate gender identity may alter between Tanner Stage Two and Tanner Stage Four in response to increased endogenous sex hormones. No evidence is cited to support that hypothesis. In fact, none of the adolescents carefully selected for suspension of puberty by the clinicians at the VU University Medical Centre in Amsterdam has expressed regret or sought to reverse the treatment process.

The experience of the two BSPED authors, who are responsible for the care of gender dysphoric adolescents in the UK, is that, in a sample of 23 cases, 20 did not relinquish their declared gender identity despite being required to undergo pubertal development that was consistent with their phenotype rather than their innate gender identity. None of those patients had been psychologically screened prior to being seen by these two clinicians, which might have identified at an early stage the 3 patients who did change their minds.

University of Manchester Medical School

Dr Simona Giordano, the medical ethicist at the University of Manchester Medical School has prepared a paper on the ethico-legal issues[1]. Her conclusions concerning the BSPED Guidelines are as follows:

• they are clinically, ethically and legally questionable.
• they are at risk of being incongruent with English legislation and with the ethical principles that such legislation incorporates.
• it is mistaken to assume that clinicians are in no way responsible for the foreseeable consequences of their inaction (which include self-harm and suicidality in gender dysphoric adolescents who are denied medication to suspend puberty).

The Netherlands

Perfectly respectable clinical centres in other countries do offer suspension of puberty to carefully selected gender dysphoric adolescents and their families.

Information about the Dutch approach to the treatment of adolescents was published by Professor Peggy Cohen-Kettenis and Professor Friedemann Pfafflin: in 2003 [2]. Subject to the fulfilment of specified criteria, medication to suspend puberty may be offered at Tanner Stage Two [3].

The Dutch approach is also described in the paper, “Clinical Management of Gender Dysphoria in Adolescents”, published in 2006 [4].

The Dutch team is taking great care to conduct its own programme of treatment in a strictly controlled and carefully recorded manner. That enables them to provide valid data for use by other clinicians. However, the Dutch clinicians make no recommendation that other clinicians should only provide this treatment in a research setting. In their article to be published in the European Journal of Endocrinolgy, Professor Henriette Delemarre-van de Waal and Professor Peggy Cohen-Kettenis state that “Treatment outcome in transsexuals is expected to be more favourable when puberty is suppressed than when treatment is started after Tanner Stage Four or Five” [5].

They also advise that “…the short term data of delaying puberty do not show serious side effects related to growth and bone metabolism. However the long term outcome of this treatment on the various systems (growth, bone, brain development and psychological status) is essential before making conclusions on the safety of the treatment, when started at an early phase of puberty”.

The United States

Three eminent American clinicians have made comments on the early suspension of puberty:

• Professor Peter Lee, at Penn State College of Medicine, has stated “While the care of adolescent transsexuals is not centralized in the US, suppression of puberty is commonly practiced in multiple centres.” He confirms that he does suppress at Tanner Stage Two or Three. His belief that it is warranted is stated in the article he wrote jointly with Dr Christopher P Houk [6].
• Dr Walter Meyer III, at the University of Texas Medical Branch, has stated “We have a multidisciplinary team in Galveston and we have been using this approach for over 6 years now.”
• Dr Norman Spack, at the Children’s Hospital Boston has stated “Until now a couple of patients have obtained analogue from their own primary care MDs after we have screened them psychologically and we are following these patients along with their own physicians.” He also says that “Children’s Hospital Boston has just assembled an Interdisciplinary Gender Team which I am co-chairing along with Paed Urologist Dr. David Diamond (Endocrinology, Urology, Genetics, Ethics, Psychology, Neonatology, Gynaecology) that will soon see patients jointly and collaborate in evaluation and research on appropriate patients, from DSD (Disorders of Sex Development) to Transgenderism. It was not I but the entire group that insisted that Gender Identity Disorders be included in the clinical program. We are awaiting approval from our Institutional Review Board and the FDA to acquire already-offered free GnRH analogue for clinical use in carefully selected Tanner 2 transgendered teens.”

Australia

The Court’s permission is required for any physical intervention in the medical treatment of gender dysphoric adolescents. Permission has already been granted for early suspension of puberty in at least one case. Professor Garry Warne, at the Royal Children’s Hospital, Parkville, Victoria, has confirmed that he too would apply for the Court’s permission to suspend puberty in such a case.

Discussion

Hence, sufficient evidence exists of the harm caused by refusing to suspend puberty to persuade eminent clinicians that this treatment should be offered. The progress report on the London Symposium of experts in the field, in May 2005, describes the “risk of unwanted acting out and self-harm”. The paper describing the Dutch approach states that “adolescents with gender dysphoria may suffer deeply from fears relating to the physical changes of puberty or, for older adolescents, distress relating to the changes already experienced in puberty.” [4]. Bernadette Wren&pos;s paper, published in 2000, speaks of their “lives being unbearable without physical treatment”[7].

Case Histories

In addition, although anecdotes are not reliable data, there are persuasive reports about individual patients. In a letter to one of the authors of the BSPED Guidelines, her 16½ year-old patient, who has undergone the transition from a male to a female gender role but was refused early suspension of puberty, says “The last two and a half years have been horrendous for me, with my body becoming so disgustingly adult male that I cannot bear it. I sometimes feel as if I will go crazy with the sadness and desperateness of it.

Now, unfortunately, it is really a case of damage limitation.” Dr Anne Thompson, the Consultant Child and Adolescent Psychiatrist (at the Lincolnshire Partnership NHS Trust) has, with this patients’ permission, written the following about her: “I have been saddened by my patient’s profound distress and despair about her situation. Her anguish about her male body, which has developed increasingly obvious secondary sexual characteristics, has been profound. Every day tasks such as walking to school, choosing what to wear in warm weather and taking part in sport are difficult because my patient hates her male body.

In my view, distress about her maleness has significantly affected my patient’s emotional health. She is almost always low and hopeless, although she makes great efforts to disguise these feelings. She has made suicide attempts.”

In the case of a British 12 year old, Professor Peggy Cohen-Kettenis has provided a second opinion that, according to the Dutch protocol, this adolescent “would be considered eligible for hormone treatment to delay her puberty, as soon as she would have reached pubertal stage II (Tanner stage !!)“. Nonetheless, two of the authors of the BSPED Guidelines have refused to suspend this adolescent’s puberty.

The mother of this adolescent has written “now that she is in the beginning stages of puberty I believe that the Dutch approach to treatment by blocking at Tanner Stage 2 is appropriate for my child. I do not believe that making her endure puberty to give her experience of living in the male body will do anything other than push her into depression and anxiety, culminating in self harm, probably suicide.”

A mother in the USA has written the following about hormone blockers: “I can tell you about my son’s teen years NOT having them. He went from a bright, inquisitive child to a teenager diagnosed with clinical depression who self mutilated & drank to excess.”

Hence, the adolescents currently cared for by two of the authors of the BSPED Guidance provide them with case examples of the immediate distress caused by refusing to suspend puberty. What they appear to lack is any clinical experience of the harmful effects of inappropriate and unwanted secondary sex characteristics in adulthood, when they are no longer involved in their patients’ care.

These characteristics are either irreversible or require invasive, painful and expensive surgical correction and gravely inhibit effective social functioning. Dr Spack deals with this matter in his published article on transgenderism [8]. He is “increasingly convinced that anyone involved in the evaluation and potential therapy of gender dysphoric pre-teens and adolescents needs to have ample familiarity with transgendered post-pubertal adolescents, young adults and adults.“

Critique

There is concern among the authors of the BSPED Guidelines about the possible loss of fertility if puberty is suspended. However, treatment with hormone blockers is acknowledged to be fully reversible in the RCP Guidance and the Standards of Care. That includes achievement of spermatogenesis in male to female cases and maintenance of viable follicles in female to male cases. As Dr Spack says “Until very recently, the only population of adolescents treated with GnRH analogues (blockers) had been precociously pubertal children who were advanced at the time of initiation of treatment in every pubertal dimension.

Our experience with those precocious children is that a normal puberty returns in 6–12 months after the termination of analogue and, while I haven’t seen reports of their fertility, their physiologic functioning, menstrual regularity, etc leaves little doubt that it will be normal.” Professor dr Petra De Sutter, at Ghent University Hospital, agrees with Dr Spack and adds “probably even suppression of spermatogenesis with androgen-blockers and estrogens will remain reversible for years, if indeed testicular biopsy and ICSI is used, as we do in a couple of hundred ICSI cycles for azoospermic men each year, in our centre alone.” Accordingly, issues related to reproduction can remain unresolved until the adolescent is competent to make an informed decision.

The authors of the BSPED Guidelines have also raised the issue of whether an adolescent at Tanner Stage Two is competent to give informed consent. The paper cited above on the Dutch approach [4] states that informed consent is essential for any type of physical intervention. It requires treatment information to be repeatedly given and discussed. Of course, suspension of puberty is fully reversible, which means that the adolescent is not being asked to give irrevocable consent. Therefore, as in cases of precocious puberty, the question of competence does not need to be a major factor. In any case, it is not suggested that suspension of puberty should be offered to any adolescent without parental consent.

Waiting for the results of any comparison between the long-term outcomes of the British and Dutch approaches to administering hormone blockers, before considering any changes to the BSPED Guidelines, risks causing grave and foreseeable psychological harm to all the British adolescents, experiencing profound and persistent gender dysphoria, whose inappropriate and harmful pubertal development has not been prevented.

Consequently, GIRES suggests that the BSPED Guidelines should be subjected urgently to an objective medical and ethical review. Meanwhile, GIRES urges the BSPED Committee to state clearly that no British clinician offering adolescents and their parents the choice of following the perfectly respectable Dutch approach would be exposed to clinical governance risk.

Information Sources

GIRES acknowledges that the authors of the BSPED Guidelines and the other clinicians named above are all trying to ensure that hormone blocking medication is provided responsibly for adolescents who experience profound and persistent gender dysphoria. It is very grateful to them for engaging in the extensive e-mail correspondence to which it has referred in this Commentary. In addition to that correspondence, GIRES has referred to the following documents:

[1] Simona Giordano,Gender Atypical Organisation in Children and Adolescents: Ethico-Legal Issues and a Proposal for New Guidelines International Journal of Children’s Rights ;2007;15.

[2] Cohen-Kettenis PT, Pfäfflin F, Transgenderism and intersexuality in childhood and adolescence: Making choices, Thousand Oaks, CA:Sage ;2003;131-154

[3] Cohen-Kettenis PT, Pfäfflin F, Transgenderism and intersexuality in childhood and adolescence: Making choices, Thousand Oaks, CA:Sage ;2003;145

[4] Delemarre-Van de Waal HA, Cohen-Kettenis PT, Caring for Transgender Adolescents in BC: Suggested Guidelines – Clinical Management of Gender Dysphoria in Adolescents Transcend Transgender Support & Education Society and Vancouver Coastal Health’s Transgender Health Program; 2006

[5] Delemarre-Van de Waal HA, Cohen-Kettenis PT, Clinical management of gender identity disorder in adolescents: A protocol on psychological and paediatric endocrinology aspects Eur J Endocrinol; 2006;155(Suppl. 1):131–7

[6] Christopher P Houk, Peter A Lee, The Diagnosis and Care of Transsexual Children and Adolescents: A Paediatric Endocrinologists’ Perspective Journal of Paediatric Endocrinology & Metabolism; 2006;19(2)

[7] Wren B. Early physical intervention for young people with atypical gender identity development. Clin Child Psychol Psychiatr; 2000;5:22031.

[8] Spack, N, Transgenderism; Lahey Clinic Medical Ethics Journal, Fall edition; 2005.