Wikipedia

Dutch Protocol

Not to be confused with Groningen Protocol.

The Dutch Protocol is an approach (protocol) to the treatment of gender dysphoria in children that involves the use of puberty blockers to prevent puberty. It was developed by Dr Peggy Cohen-Kettenis in the 1990s.[1] The treatment takes its name from the Dutch researchers who developed and applied it in the late 1990s. The first official version of the Dutch protocol was published in 2006.[2]

The claim was made that the treatment was fully reversible, and that a study of 70 children showed evidence that it had an overall positive outcome for those treated. A number of subsequent studies supported this treatment as safe and effective, and it became the standard treatment in the field.[3]

History

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The idea of using puberty blockers originated in the Netherlands and was developed by Professor of Pediatrics Peggy Cohen-Kettenis, pediatric endocrinologist Henriette Delemarre, child psychiatrist Annelou de Vries,[4] and health psychologist Thomas D. Steensma. The first patient received these drugs in 1987.[5] Cohen-Kettenis collaborated with endocrinologists in Amsterdam, one of whom had experience prescribing gonadotropin-releasing hormone analogs, which were relatively new at the time. At the time, gender dysphoric teenagers had to wait until they were of age for cross-sex hormones, but the team proposed that earlier interventions might benefit carefully selected minors.

In 1998, Cohen-Kettenis and Stefanie van Goozen published the first case study in which a trans boy (B) ("female-to-male transsexual") received puberty blockers.[6] Because a psychiatrist had previously diagnosed B with gender dysphoria, he decided to administer puberty blockers after consulting with a pediatric endocrinologist.[6] This gave B more time to explore the patient's gender identity. At age thirteen, B was referred to the gender clinic for young people, then located in Utrecht.[6] After several conversations with both the trans boy and his parents, a multidisciplinary team decided to continue prescribing puberty blockers.[6] Finally, at age eighteen, B decided to start testosterone treatment. Some time later, it was decided to have B's breasts and ovaries removed. In a conversation after these interventions, it was indicated that B no longer had gender dysphoria.[6] The questionnaires also showed that there were no psychological, somatic, or personality problems.[6] Based on this case, Cohen-Kettenis and Van Goozen argued that puberty suppression could have physical and psychological benefits in the diagnosis and treatment of transgender adolescents.[6]

First studies

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De Vries et al. (2011) published a cohort study of the first 140 adolescents who received puberty blockers and/or gender affirming hormones between 2000 and 2008.[7] The study group consisted of the first 70 adolescents who received puberty blockers: 33 born boys and 37 born girls.[7] All participants had experienced gender dysphoria since childhood, were supported by their environment, had no comorbidities that could influence the diagnosis, and had reached at least Tanner stage 2 or 3.[7]

The group was examined twice: shortly before starting puberty blockers and shortly before starting cross-sex hormones.[7] Various questionnaires were used to measure IQ, emotional and behavioral problems, depressive symptoms, the intensity of anxiety and anger, general psychological functioning, gender dysphoria, and body satisfaction.[7] Comparing the two measurement points showed that adolescents had significantly fewer emotional and behavioral problems shortly before starting gender-affirming hormones than before starting puberty blockers.[7] The participants also had significantly fewer depressive symptoms and improved their general psychological functioning.[7] No significant improvement in anger, anxiety, or gender dysphoria was measured.[7] Because puberty suppression reduces the associated stress of gender dysphoria, De Vries et al. (2011) concluded that it offers a valuable opportunity to give adolescents time to consider their gender identity and any subsequent medical steps.[7]

In 2014, a follow-up study was conducted on some of the participants as well as new adolescents.[8] [Note 1] After treatment with sex hormones and surgery, the same variables were measured as in 2011, as well as the subjective and objective well-being of the participants.[8] The results showed that both the intensity of gender dysphoria and of anxiety and anger had decreased significantly at the end of the study.[8] The subjective and objective well-being of the participants was comparable to that of their peers without gender dysphoria.[8] Their measured well-being based on environment (i.e., support from parents, friends, access to health care, etc.) was even significantly better than that of the average Dutch adolescent.[8] Based on the results of these two studies, De Vries et al. (2014) concluded that the protocol-based use of puberty blockers, followed by hormone treatment and gender reassignment surgery, improves the psychological functioning of transgender adolescents.[8]

De Vries became known in the media for her working method through her appearance on the television program De Wereld Draait Door (DWDD) with Valentijn de Hingh, who was a teenager in transition at the time.[9] A year later she appeared again on DWDD, this time with three transgender boys.[10]

For the participants of the first cohort studies, the minimum age of twelve years was maintained. However, there was now discussion whether this was desirable.[8][11] For example, de Vries et al. (2014) indicated that the age of twelve years could not be desirable for born girls, in whom puberty often begins before that age.[8] In 2017, the Endocrine Society published its recommendations for the clinical management of gender dysphoric individuals.[12] They abandoned the minimum age and recommend the use of puberty blockers from Tanner stage M2 or G2 in the development of sexual characteristics.[12] This recommendation was adopted in the Netherlands by 2018 at the latest.[13]

Protocol

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It is common for a fertility doctor and ethicist to be present in addition to these specialists.[14]

In consultation with the adolescent and the parents, the pediatrician will determine which type of GnRH injection will be used.[15]The adolescent must come for a check-up every six months to monitor the effects of puberty blockers. This consists of a bone density test to determine whether the adolescent's bones are strong enough.[15] At the doctor's request, a hand x-ray can also be taken to measure growth using the growth plates.[15]

Duration of gender dysphoria

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The protocol has been adapted over time. Initially children needed to have to experienced gender incongruence before puberty. Subsequently, an adolescent can also be treated if these feelings arose during puberty.[16]

Minimum age

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The original protocol recommended a minimum age of twelve for puberty blockers.[2] A 2012 study by De Vries and Cohen-Kettenis states that this age was chosen because at the time, virtually nothing was known about the use of puberty blockers in transgender adolescents.[3] Also, children around this age have already completed part of their cognitive and emotional development and, under Dutch law, are allowed to make medical decisions, provided they have parental consent. De Vries and Cohen-Kettenis indicated that this minimum age could be dropped once more is known about puberty blockers.[3]

International application

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Several international organizations, such as the World Professional Association for Transgender Health (WPATH),[17] the American Academy of Pediatrics (AAP),[18] the Endocrine Society,[12] and the European Society for Sexual Medicine (ESSM),[19] support the use of puberty blockers in transgender youth. The varying implementation of the Dutch protocol in different European countries is described below.

Netherlands

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As described above, puberty blockers have been prescribed since the late 1990s. In 2006, the Dutch protocol was standardized for the first time.[2] Because the demand for care among adolescents rose sharply in the 2010s, capacity was further expanded in the 2020s. For example, the Radboud University Medical Center opened a gender clinic for adolescents on March 2, 2020 and for adults on March 1, 2021.[20][21] The Beatrix Children's Hospital, part of UMC Groningen|, opened a gender clinic for minors in April 2024.[22] Young people can now go there for puberty blockers and (from the age of sixteen) gender-affirming hormones.[22] [Note 5]

Doubts about the Dutch Protocol also reached the Netherlands, where several researchers spoke out about the approach.[23] For example, in August 2023, Lodewijk Smeehuijzen, Jilles Smids and Coen Hoekstra published a study in which they expressed legal and ethical concerns.[24] In October 2023, the television programme Zembla drew attention to the controversy that had arisen over the Dutch Protocol.[25] A few months before the Zembla broadcast, the Volkskrant had also published a critical review.[26]

On February 27, 2024, the House of Representatives adopted a motion, drafted by Rosanne Hertzberger, to initiate an investigation into the scientific quality of the care model based on the Dutch protocol.[27]

England and Wales

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See also: NHS Gender Identity Development Service

According to an interim report from the Cass Review (2023), the independent working group set up to investigate the Tavistock clinic's practices, there are "significant differences" between the Dutch Protocol and Tavistock's practices.[28] For example, young people in the did not receive psychological support for neurodiversity and/or comorbidities before being prescribed puberty blockers, while the Dutch Protocol requires this.[28] Furthermore, NHS endocrinologists did not attend multidisciplinary meetings where complex cases were discussed and had no contact with clinic staff treating the young person until shortly before the report was published.[28] Finally, the number of clinical appointments following the administration of puberty blockers decreased, while the Dutch Protocol suggests this should increase.[28]

Based on the recommendations of the interim review, an NHS England preliminary report decided that puberty blockers should only be given to transgender children and adolescents in a research setting.[29] The report also recommends that the relationship between gender dysphoria and social/psychological relationships should be explored during therapy.[29] It also proposes that the care transgender young people receive should be primarily psychological in nature.[29]

A joint response from Professional Associations for Transgender Health (WPATH, ASIAPATH, EPATH, PATHA, and USPATH) criticized a number of assumptions and recommendations in the NHS report.[30] For example, they labeled the choice to prescribe puberty blockers only in the research setting as unethical.[30] They argued that "it is ethically problematic to persuade adolescents to participate in research in order to access medically necessary treatment.";[30] [Note 6] They also expressed concern that the NHS document's emphasis on psychotherapy as the primary intervention.[30] They fear that in such a situation, gender dysphoria could be considered a mental disorder that can be treated with psychotherapy. They emphasize that decades of research has shown such therapy to be ineffective. Finally, they criticised the proposal that parents' names be reported to child protection services if their child receives puberty blockers through a source other than the NHS.[30]

A later, interim policy report ruled that a multidisciplinary team may prescribe puberty blockers in exceptional circumstances outside of research, provided they support their use in the specific case.[31]] A joint response from EPATH and WPATH condemned this interim policy report. The organizations criticized the decision to stop routinely prescribing puberty blockers while no new gender clinics have yet opened.[32] They argue that this is in breach of NHS statutes.[32] They also argue that the decision to stop using puberty blockers compromises WPATH's scientific standards.[32] They express concern about the lasting negative impact this could have on transgender young people in the UK.[32]

Scotland

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In Scotland, there are four clinics for people with questions about their gender identity.[citation needed] One of these, Glasgow Sandyford Gender Identity Centre, also treats children with puberty blockers. [Note 7] Following the recommendations of the Cass Review, Sandyford Clinic decided on 18 April 2024 to temporarily stop prescribing puberty blockers to new clients.[33]

Finland

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The head of the Finnish national pediatric gender program, psychiatrist Riittakerttu Kaltiala-Heino, has repeatedly highlighted significant complications of the Dutch, gender-affirming treatment model.[citation needed] Partly at her urging, COHERE, the Finnish Board of Health, decided in mid-2020 to retain the Dutch protocol only in its original 2006 form.[34] For example, adolescents are only eligible for puberty blockers if they experience lifelong gender incongruence that worsened after puberty. If an adolescent also experiences psychological "comorbidities," these must first be addressed by regional care providers. If the adolescent still experiences gender dysphoria, they are treated at one of the university hospitals. A decision on whether puberty blockers should be administered to the adolescent after a diagnosis is made on an individual basis. If so, the adolescent is treated at Tampere University Hospital or Helsinki University Hospital.

Footnotes

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  • 1 A number of participants ( n = 15) were excluded from the data processing for various reasons (including refusal, failure to complete questionnaires, etc.). One trans woman was excluded because she died after her gender reassignment surgery from necrotizing fasciitis, a rare bacterial infection that can occur after wound formation and destroys muscle, skin, and fat tissue in a short period of time (de Vries et al., 2014, p. 697). There was no further significant statistical difference between the variables before puberty suppression in participants and non-participants (ibid.).
  • 2 "Since it's [sic] opening in 2007, the Pediatric Gender Clinic offered psychological and medical assessment and treatment by a multidisciplinary team (psychologists, psychiatrists, endocrinologists, social workers). The clinical frame work has been elaborated throughout the last decade [2011-2020, ed.], using the guidelines of the Standards of Care, formulated by the World Professional Association for Transgender health (WPATH) and the guidelines of the Endocrine Society" (From Cauwenberg et al., 2021, p. 672).
  • 3 "Jusqu'ici [2017, the year in which the Transgender Care Convention came into force, ed.], a French consultation with a structured approach to the preparation of transgenre minors. Wallonie-Bruxelles, depending on the capacity of the region, the language of the region."
  • 4 "Inaugurée on October 1, 2019 on the site of the ND des Bruyères, the new consultation is due to an excellent assessment of the young patient." (...) "With the care of Pr. Alain Malchair and Pr. Anne-Simone Parent, a consultation mixed with Pédopsychiatrie et Endocrinologie pédiatrique pour enfants transgenres au le jour fin 2019 sur le site ND de Bruyères."
  • 5 The diagnosis, indication and psychological support have been outsourced to Top GGZ Jonx (or another partner of UMC Groningen) (Kruse, 2024).
  • 6 "It is ethically problematic to compel adolescents to participate in a research study to access medically necessary treatment; (...)" (WPATH et al., 2022).
  • 7 Since the Scotland Act 1998, Scotland has had the power to form its own parliament and make its own laws. Following this Act, the Welsh, Scottish, and Northern Irish parliaments have also had authority over their own health care systems since 1999 (respectively NHS Wales, NHS Scotland, and NHS Northern Ireland; https://www.instituteforgovernment.org.uk/explainer/devolution-and-nhs). Therefore, there may be differences in working methods between NHS Scotland and NHS England.

References

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  1. ^ Cass, Hilary (2024). "Final Report – Cass Review". cass.independent-review.uk. Retrieved 2024-04-20.
  2. ^ a b c Delemarre-van de Waal, Henriette A; Cohen-Kettenis, Peggy T (Nov 2006). "Clinical management of gender identity disorder in adolescents: a protocol on psychological and paediatric endocrinology aspects". European Journal of Endocrinology. 155: S131 – S137. doi:10.1530/eje.1.02231. ISSN 0804-4643.
  3. ^ a b c de Vries, Annelou L. C.; Cohen-Kettenis, Peggy T. (March 2012). "Clinical Management of Gender Dysphoria in Children and Adolescents: The Dutch Approach". Journal of Homosexuality. 59 (3) (Year 59 ed.): 301–320. doi:10.1080/00918369.2012.653300. ISSN 0091-8369. PMID 22455322.
  4. ^ The Fractious Evolution of Pediatric Transgender Medicine Frieda Klotz 04.06.2022, Undark Magazine
  5. ^ "How a celebrated Dutch treatment method for transgender youth came under pressure [timeline]". Zembla (in Dutch). BNNVARA. 2023-11-07. Archived from the original on 2023-11-08. Retrieved 2023-11-13.(Google translation)
  6. ^ a b c d e f g Cohen-Kettenis, P. T.; van Goozen, S. H. M. (1998). "Pubertal delay as an aid in diagnosis and treatment of a transsexual adolescent". European Child & Adolescent Psychiatry. 7 (4) (Year 7 ed.): 246–248. doi:10.1007/s007870050073. ISSN 1435-165X. PMID 9879847.
  7. ^ a b c d e f g h i de Vries, Annelou L. C.; Steensma, Thomas D.; Doreleijers, Theo A. H.; Cohen-Kettenis, Peggy T. (2011-08-01). "Puberty Suppression in Adolescents With Gender Identity Disorder: A Prospective Follow-Up Study". The Journal of Sexual Medicine. 8 (8) (Year 8 ed.): 2276–2283. doi:10.1111/j.1743-6109.2010.01943.x. ISSN 1743-6095. PMID 20646177.
  8. ^ a b c d e f g h de Vries, Annelou L.C.; McGuire, Jenifer K.; Steensma, Thomas D.; Wagenaar, Eva C.F.; Doreleijers, Theo A.H. (2014-10-01). "Young Adult Psychological Outcome After Puberty Suppression and Gender Reassignment". Pediatrics. 134 (4) (Year 134 ed.): 696–704. doi:10.1542/peds.2013-2958. ISSN 0031-4005. PMID 25201798.
  9. ^ "Transgender model Valentijn de Hingh". De Wereld Draait Door (in Dutch). BNNVARA. 2012-01-13. Retrieved 2023-11-13.
  10. ^ "Transgender jongeren". De Wereld Draait Door (in Dutch). BNNVARA. 2010-11-15. Retrieved 2023-11-13 – via YouTube - Kanaal Aidy Vargas.
  11. ^ Shumer, Daniel E.; Spack, Norman P. (January 2015). "Transgender medicine—long-term outcomes from 'the Dutch model'". Nature Reviews Urology. 1 (1) (Year 12 ed.): 12–13. doi:10.1038/nrurol.2014.316. ISSN 1759-4820. PMC 4349440. PMID 25403246.
  12. ^ a b c Hembree, Wylie C; Cohen-Kettenis, Peggy T; Gooren, Louis; Hannema, Sabine E; Meyer, Walter J (2017-09-13). "Endocrine Treatment of Gender-Dysphoric/Gender-Incongruent Persons: An Endocrine Society* Clinical Practice Guideline". The Journal of Clinical Endocrinology & Metabolism. 102 (11) (Year 102 ed.): 3869–3903. doi:10.1210/jc.2017-01658. ISSN 0021-972X. PMID 28945902.
  13. ^ Ministerie van Volksgezondheid, Welzijn en Sport (2018). Kwaliteitsstandaard Transgender - Somatisch
  14. ^ Menno Sedee (2023-01-27). "Rust om te kiezen; Genderdysforie Zijn de twijfels over puberteitsremmers voor transgenderjongeren terecht?". NRC (in Dutch). Archived from the original on 2023-01-27. Retrieved 2023-11-11.
  15. ^ a b c "Genderdysforie - Puberteitsremmers". Amsterdam UMC (in Dutch). Archived from the original on 2023-10-31. Retrieved 2023-11-13.
  16. ^ Biggs, Michael (2023-05-19). "The Dutch Protocol for Juvenile Transsexuals: Origins and Evidence". Journal of Sex & Marital Therapy. 49 (4): 348–368. doi:10.1080/0092623X.2022.2121238. ISSN 0092-623X. PMID 36120756.
  17. ^ Coleman, E.; Radix, A. E.; Bouman, W. P.; Brown, G. R.; de Vries, A. L. C. (2022-08-19). "Standards of Care for the Health of Transgender and Gender Diverse People, Version 8". International Journal of Transgender Health. sup1 (Suppl 1) (Year 23 ed.): S1 – S259. doi:10.1080/26895269.2022.2100644. ISSN 2689-5269. PMC 9553112. PMID 36238954.
  18. ^ "Position Statement on Treatment of Transgender (Trans) and Gender Diverse Youth" (PDF). American Pediatric Association. 2020. Retrieved 20 April 2024.
  19. ^ T'Sjoen, Guy; Arcelus, Jon; De Vries, Annelou L.C.; Fisher, Alessandra D.; Nieder, Timo O. (2020-04-01). "European Society for Sexual Medicine Position Statement "Assessment and Hormonal Management in Adolescent and Adult Trans People, with Attention for Sexual Function and Satisfaction"". The Journal of Sexual Medicine. 17 (4) (Year 17 ed.): 570–584. doi:10.1016/j.jsxm.2020.01.012. ISSN 1743-6109. PMID 32111534.
  20. ^ Transvisie (2 March 2020). "RadboudUMC opent Expertisecentrum voor transgender kinderen tot 16 jaar" (in Dutch). Retrieved 20 April 2024.
  21. ^ Radboudumc (1 March 2021). "Vanaf maart ook transgenderzorg voor volwassenen in Radboudumc. Start nieuw centrum regio Oost verlicht de druk op de wachtlijsten" (in Dutch). Retrieved 20 April 2024.
  22. ^ a b Kruse, Janneke (26 March 2024). "Hormoonbehandeling voor kinderen met genderdysforie nu ook in UMCG" (in Dutch). UMCG - Nieuws en verhalen. Retrieved 20 April 2024.
  23. ^ Klotz, Frieda (2023-04-28). "A Teen Gender-Care Debate Is Spreading Across Europe". The Atlantic. Retrieved 2023-11-08.
  24. ^ Lodewijk Smeehuijzen; Jilles Smids; Coen Hoekstra (2023-07-20). "Blog - Transgenderzorg aan kinderen, Juridische bedenkingen bij het Dutch Protocol (2018)". Nederlands Juristenblad (in Dutch). Retrieved 2023-11-08.
  25. ^ "Het transgenderprotocol". Zembla (in Dutch). BNNVARA. 2023-10-24. Archived from the original on 2023-11-04. Retrieved 2023-11-08.
  26. ^ Kaya Bouma en Ellen de Visser (2023-02-24). "Analyse - De behandeling van transgender jongeren in Nederland werd geprezen. Nu groeit de kritiek op 'the Dutch approach'". de Volkskrant. Archived from the original on 2023-02-24. Retrieved 2023-11-13.
  27. ^ motie van Hertzberger
  28. ^ a b c d "Independent review of gender identity services for children and young people: Interim report" (PDF). The Cass Review. February 2022. Retrieved 20 April 2024.
  29. ^ a b c "Interim service specification: Specialist service for children and young people with gender dysphoria (phase 1 providers)" (PDF). NHS England. 20 October 2022. Retrieved 20 April 2024.
  30. ^ a b c d e "WPATH, ASIAPATH, EPATH, PATHA, and USPATH Response to NHS England in the United Kingdom (UK). Statement regarding the Interim Service Specification for the Specialist Service for Children and Young People with Gender Dysphoria (Phase 1 Providers) by NHS England*" (PDF). WPATH, ASIAPATH, EPATH, PATHA en USPATH. 25 November 2022. Archived from the original (PDF) on 2024-04-14. Retrieved 20 April 2024.
  31. ^ "Interim clinical policy: Puberty suppressing hormones (PSH) for the purpose of puberty suppression for children and adolescents who have gender incongruence/dysphoria [1927]" (PDF). NHS England. 2023. Retrieved 20 April 2024.
  32. ^ a b c d "WPATH and EPATH Response to NHS England' (UK) Puberty blocker policy" (PDF). EPATH en WPATH. 12 November 2023. Retrieved 20 April 2024.
  33. ^ Brooks, Libby (18 April 2024). "Scottish gender clinic pauses prescribing puberty blockers to under-18s". The Guardian. Retrieved 20 April 2024.
  34. ^ https://palveluvalikoima.fi/documents/1237350/22895008/Summary_minors_en.pdf/aaf9a6e7-b970-9de9-165c-abedfae46f2e/Summary_minors_en.pdf [bare URL PDF]
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