How do Italian pediatric endocrinologists approach gender incongruence?

Gender incongruence (GI) is a term used to describe a marked and persistent incompatibility between the sex assigned at birth (SAAB) and the experienced gender. Transgender and gender diverse (TGD) persons can feel highly uncomfortable with primary and secondary sexual characteristics and the social role associated to the SAAB and they can experience a severe psychological distress defined gender dysphoria (GD) [1]. The prevalence of GI among TGD youths is difficult to determine, however over the past decades a great increase of the number of TGD youths presenting at the gender services has been registered [2‐4].

A recent systematic review estimated the prevalence of GI among children and adolescents between 1.2% and 2.7% (increasing up to 2.5–8.4% when a broader non binary concept of gender diversity is investigated) [5]. Also, at the present youths assigned female at birth (AFAB) represent around 70% of the TGD youth with an inversion of the previously known trend. ) Although Italian guidelines have been published almost 10 years ago [6], a uniform delivery of care to Italian TGD youths has still not been accomplished. Several factors may play a role in this, such as the regional differences within the Italian healthcare system, the insufficient number of trained healthcare professionals, the lack of homogenous distribution of reference centers nationwide (according to the National Observatory on Gender Identity, ONIG, only nine centers provide care to TGD youths, two in the South, five in the center and two in the Nord of Italy).

According to international and national guidelines [6‐8], puberty suppression through Gonadotropin-Releasing Hormone agonists (GnRHa) can be prescribed to TGD youths after a diagnosis of marked and persistent GI is made and puberty is progressed at least at Tanner stage 2, upon acquisition of informed consent from the youth and the legal guardian(s). This treatment will delay the development of undesired secondary sexual characteristics and give time to the youth to explore his/her gender identity. By the age of 16 (or a bit earlier in some countries) gender affirming hormones (GAH) can be added if GI is persistent and the adolescent is willing to proceed in the transition. As established by the Italian Medicines Agency (AIFA) in February 2019, all these medications are free of charge for the TGD individuals. In Italy, the TGD individuals (aged > 18 years) willing to proceed with gender affirming surgery will have to require a formal authorization to the Court. Since 2015, gender affirming surgery is no longer required to obtain the change of name and gender. Although gender affirming treatment for TGD youths is still characterized by an ongoing debate, the delay (or the deny) of treatment when necessary, might have extreme consequences on the health of the youth.

We proposed a survey of 20 questions to the directors of the 32 Italian Centers of pediatric endocrinology participating to the Study Group on Growth and Puberty of the Italian Society of Pediatric Endocrinology (ISPED) to investigate the approach of the Italian pediatric endocrinologists to GI. The questions of the survey are shown in the supplement.

Eighteen pediatric endocrinologists representative of 16 different centers belonging to 11 different regions (5 in the North, 2 in the center, 2 in the South and 2 islands) responded to the survey.

. Colleagues of 14 centers reported to treat TGD youths, but 64% had in follow-up less than 10 individuals. Only one center reported to have in charge more than 20 TGD youths. According to the experience of 50% of colleagues, GI is more frequent among youths assigned male at birth while according to 36% GI has a higher prevalence in youths assigned female at birth. In 79% of centers TGD individuals receive the diagnosis of GD between 12 and 18 years of age and at least three healthcare professionals are involved (more often a child and adolescent psychiatrist, a psychologist and a pediatrician). In only 3 centers a bioethicist is part of the team. 79% of the interviewees consider appropriate to start puberty suppression only in selected patients and 50% thinks that puberty suppression should be started between 10 and 12 years of age (if puberty is already begun). According to 50%, gender affirming hormones should be started before the age of 16. Mental health disorders (including eating disorders) are often diagnosed in TGD youths and 50% of centers follow TGD youths who take psychotropic medications (mainly antidepressants). 36% of centers include in the follow-up provided to TGD youths several investigations to evaluate the effect of the treatment and possible side effects, such as the evaluation of glucose metabolism, lipid profile, coagulation profile, bone mineralization and mental health assessment. .

Only 21% of centers follow TGD individuals who chose to proceed with gender affirming surgery; however this is most likely due to the fact that surgery is performed after the age of 18, thus after the transition to adult care. Only 12% of interviewees think that surgery should be offered earlier, specifically by the age of 16. In 29% of centers, more than 50% of TGD youths are victims of bullying (according to personal estimations), while in 43% of centers the percentage is lower (10–50%). 29% reports early school drop out in < 30% of cases, 21% reports an incidence > 30% and 21% does not estimate a higher incidence of school drop out in TGD youths. 36% of the interviewees affirm that more than 50% of TGD youths is satisfied with the body image obtained with to the treatment, while only 14% refers a satisfaction rate > 90%.