What is the Dutch Protocol for Gender Dysphoria?

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Patient Presentation
A 14-year-old girl came to clinic with her mother for her well-child appointment. She had moved to the area 2 years ago and had been seen in the school clinic for primary care, but had also been referred to the LGBTQ multidisciplinary clinic at the regional medical center. She had diagnoses of anxiety and gender dysphoria that were currently being treated with psychotherapy and hormonal pubertal suppression. The past 4 months she had been feeling very well, doing better in school with As and Bs, and had joined a school club. She attended a church but did not participate in its teen-related activities. The chart showed the LGBTQ clinic was discussing gender affirming treatment with cross-sex hormones with her. She did not want to discuss it at this time with the new pediatrician. She said was comfortable with her LGBTQ providers, mental health progress and felt good about her herself, her body and her relationships at school and home.

The past medical and social history showed her natal gender as male. She had a broken wrist from a skateboarding accident. Throughout childhood she had engaged in activities that were characteristic of both genders. When she started puberty around 12 years of age, she became quite distressed with how her body looked and felt to her. It was around that time they moved and she did social transitioning, taking on a female name, clothing etc. Her mother was very supportive of her and there were only the 2 of them in the family unit. The family history was positive for diabetes, and kidney disease.

The pertinent physical exam showed normal vital signs. Height and weight were consistent with the 10-25% but she did appear to be starting to increase her height velocity. Her physical examination was normal. Her genitalia was male and Tanner staging was 2-3 for genitals and pubic hair.

The diagnosis of a healthy female with anxiety and gender dysphoria was made. She was being provided good support and medical care. The pediatrician reiterated the confidential care that he provided. She needed a seasonal influenza vaccine in about 4 months. “You can get that at school or at the other doctors’ office. We also offer nursing appointments but you can also can come back and check in with me and I can do that for you,” he said. The pediatrician noted later that she had made an appointment for a followup appointment and an influenza vaccine.

Discussion
Terminology related to gender∂has changed over time and with newer more specific terminology developing more consensus. Also terminology used by patients to describe themselves or their situation may be different than below.

  • “Gender – denotes the public (and usually legally recognized) lived role as boy or girl, man or woman. Biological factors combined with social and psychological factors contribute to gender development.”
    Gender is not dichotomous and other terms such as third gender, agender or gender queer reflect this.

  • “Assigned gender – refers to a person’s initial assignment as male or female at birth [sometimes called birth gender or natal gender, as in “natal female” or “natal male”]. It is based on the child’s genitalia and other visible physical sex characteristics.”
  • “Gender identity – is a category of social identity and refers to an individual’s identification as male, female or, …, some category other than male or female. It is one’s deeply held core sense of being male, female, some of both or neither, and does not always correspond to biological sex.”
  • “Gender-atypical [or gender non-conforming, or gender variant] – refers to physical features or behaviors that are not typical of individuals of the same assigned gender in a given society.”
  • “Cisgender – describes individuals whose gender identity or expression aligns with the sex assigned to them at birth.”
  • “Transgender – refers to the broad spectrum of individuals who transiently or persistently identify with a gender different from their gender at birth.”
  • Gender dysphoria – when an individual’s gender identity is incongruent with their assigned gender or sexual body characteristics and this incongruence causes extreme distress.
    If the incongruence does not cause distress it is not diagnosed as dysphoria. Distress caused by social stigma, bullying, and family non-acceptance also is not diagnosed as gender dysphoria.

  • Sexual orientation – “is the personal quality inclining persons to be romantically or physically attracted to persons of the same sex, opposite sex, both sexes or neither sex.”
  • “Gender expression – the manner in which a person communicates about gender to others through external means such as clothing, appearance, or mannerisms.”
  • Transitioning is “…the process where individuals change their social and/or physical characteristics for the purpose of living in their desired gender role.” It includes social and/or general affirming treatment.
  • Social transitioning is when a person “…starts to live in the experienced gender role and encompasses clothing, gender role behavior, and the use of a name and pronouns of that gender.” This is a reversible process.
  • “Gender affirming treatment is the clinical approach that supports the expression of one’s experienced gender of which puberty blockers, hormone treatment, and surgeries may be a part.” This can be a reversible or non-reversible process.

A review of the use of gender neutral language in interviews can be found here.
Note that even from 2008 when it was published until now some terminology has been updated.

The gender identity published literature has been increasing in the last couple of decades but still there are major gaps in areas of understanding. Estimates often cite ~1.2% of 8000 high school students said that they wished to be the opposite sex or were transgender. About 2.5% were not sure about their gender. Many estimates are thought to be underestimates.

Gender identity is a developmental process. At 3-7 years are when children typically develop a sense of being a boy, being a girl or something else. By age 6-7 years the child realizes that their gender is likely to remain constant. Ages 10-13 years are very important for gender identity development as this is the time when physical puberty, gendered social relationships and romantic feelings arise. Many youth who are gender non-conforming, do not have gender dysphoria and are happy with their lived experiences. Other youth may be distressed but it may be difficult to discern if gender dysphoria will persist or desist over time. Having some experience with their own physical changes at puberty appears to be important in determining (at least partially) if gender dysphoria will persist or resolve.

According to the American Psychiatric Association the DSM 5 criteria for gender dysphoria are:

“In adolescents and adults gender dysphoria diagnosis involves a difference between one’s experienced/expressed gender and assigned gender, and significant distress or problems functioning. It lasts at least six months and is shown by at least two of the following:

1. A marked incongruence between one’s experienced/expressed gender and primary and/or secondary sex characteristics
2. A strong desire to be rid of one’s primary and/or secondary sex characteristics
3. A strong desire for the primary and/or secondary sex characteristics of the other gender
4. A strong desire to be of the other gender
5. A strong desire to be treated as the other gender
6. A strong conviction that one has the typical feelings and reactions of the other gender

In children, gender dysphoria diagnosis involves at least six of the following and an associated significant distress or impairment in function, lasting at least six months.

1. A strong desire to be of the other gender or an insistence that one is the other gender
2. A strong preference for wearing clothes typical of the opposite gender
3. A strong preference for cross-gender roles in make-believe play or fantasy play
4. A strong preference for the toys, games or activities stereotypically used or engaged in by the other gender
5. A strong preference for playmates of the other gender
6. A strong rejection of toys, games and activities typical of one’s assigned gender
7. A strong dislike of one’s sexual anatomy
8. A strong desire for the physical sex characteristics that match one’s experienced gender”

Learning Point
A Dutch multidisciplinary protocol for treatment for gender dysphoria with gender affirming treatment centers on appropriate diagnosis and extensive supportive mental health treatment if/when appropriate. Youth who are peripubertal (11/12 up to 15/16 years) may be offered reversible puberty suppression with gonadotropin releasing hormone analogues (GnRH). This can be done for up to 3-4 years. Youth (15/16 up to 18 years) then may be offered gender affirming treatment with cross-sex hormones, the effects of which can be partially reversible. Young adults (18+ years) may be offered gender affirming treatment with cross-sex hormones and/or surgeries. The outcomes “…found that after surgery the psychological function and well-being had steadily improved and were similar or better than same-age young adults from the general population.”

Patients need counseling to have a healthy lifestyle. Obesity or cardiovascular problems can increase risks of hormonal treatments. Smoking can cause problems with surgeries. Hormonal treatments can lead to bone loss so appropriate diet and exercise is imperative. Families also need information, counseling and support themselves to better understand their family member and support them.

Questions for Further Discussion
1. What types of psychological problems are gender atypical individuals are at risk for?
2. What is the primary care pediatrician’s role for patients and families with gender identity issues?
3. Where in your local area would you send patient’s for gender identity specialty care?

Related Cases

To Learn More
To view pediatric review articles on this topic from the past year check PubMed.

Evidence-based medicine information on this topic can be found at SearchingPediatrics.com, and the Cochrane Database of Systematic Reviews.
Information prescriptions for patients can be found at MedlinePlus for this topic: Gay, Lesbian, Sexual and Transgender Health

To view current news articles on this topic check Google News.

To view images related to this topic check Google Images.

To view videos related to this topic check YouTube Videos.

Delemarre-van de Waal HA, Cohen-Kettenis PT. Clinical management of gender identity disorder in adolescents: a protocol on psychological and pediatric endocrinology aspects. Eur J Endocrinol 2006;155:131-37.

de Vries AL, Cohen-Kettenis PT. Clinical management of gender dysphoria in children and adolescents: the Dutch approach. J Homosex. 2012;59(3):301-20.

Bonifacio HJ, Rosenthal SM. Gender Variance and Dysphoria in Children and Adolescents. Pediatr Clin North Am. 2015 Aug;62(4):1001-16.

de Vries AL, Klink D, Cohen-Kettenis PT. What the Primary Care Pediatrician Needs to Know About Gender Incongruence and Gender Dysphoria in Children and Adolescents. Pediatr Clin North Am. 2016 Dec;63(6):1121-1135.

Fuss J, Auer MK, Briken P. Gender dysphoria in children and adolescents: a review of recent research. Curr Opin Psychiatry. 2015 Nov;28(6):430-4.

Parekh R. Gender Dysphoria. American Psychiatric Association.
Available from the Internet at https://www.psychiatry.org/patients-families/gender-dysphoria/what-is-gender-dysphoria (rev. 2/2016, cited 9/11/18).

American Academy of Pediatrics Policy Statement. Ensuring Comprehensive Care and Support for Transgender and Gender-Diverse Children and Adolescents. Available from the Internet at: http://pediatrics.aappublications.org/content/early/2018/09/13/peds.2018-2162 (rev. 9/17/18, cited 9/17/18).

Author
Donna M. D’Alessandro, MD
Professor of Pediatrics, University of Iowa

Published