Gender incongruence of childhood: clinical utility and stakeholder agreement with the World Health Organization’s proposed ICD-11 criteria

The World Health Organization (WHO) is revising the tenth version of the International Classification of Diseases and Related Health Problems (ICD-10; WHO, 1992). This includes a reconceptualization of the definition and positioning of Gender Incongruence of Childhood (GIC). This study aimed to: 1) collect the views of transgender individuals and professionals regarding the retention of the diagnosis; 2) see if the proposed GIC criteria were acceptable to transgender individuals and health care providers 3) compare results between two countries with two different healthcare systems to see if these differences influence opinions regarding the GIC diagnosis; and 4) determine whether healthcare providers from high-income countries feel that the proposed criteria are clinically useful and easy to use. A total of 628 participants were included in the study: 284 from the Netherlands (NL; 45.2 %), 8 from Flanders (Belgium; 1.3 %), and 336 (53.5%) from the United Kingdom (UK). Most participants were transgender people (or their partners/relatives; TG) (n = 522), 89 participants were healthcare providers (HCPs) and 17 were both healthcare providers and (partners/relatives of) transgender people. Participants completed an online survey developed for this study. Overall, the majority response from transgender participants (42.9%) was that if the diagnosis would be removed from the mental health chapter it should also be removed from the ICD-11 completely, while 33.6% thought it should remain in the ICD-11. Participants were generally satisfied with other aspects of the proposed ICD-11 GIC diagnosis: most TG participants (58.4%) thought the term Gender Identity Disorder should change, and most thought Gender Incongruence was an improvement (63.0%). Furthermore, most participants (76.1%) did not consider GIC to be a psychiatric disorder and placement in a separate chapter dealing with Gender and Sexual Health (the majority response in the NL and selected by 37.5% of the TG participants overall) or as a Z-code (the majority response in the UK and selected by 26.7% of the TG participants overall) would be preferable. In the UK, the majority response (35.8%) was that narrowing the diagnosis for children was an improvement, while in the NL the majority response (49.5%) was that this was not an improvement. Although generally the results from healthcare providers were in line with the results from the transgender participants (and stakeholders) some differences were found. This study suggests that, in an ideal world, a diagnosis is not welcomed. However, realistically - due to healthcare funding - including a GIC diagnosis in ICD-11 is seen as a requirement. The choice for positioning of a diagnosis of GIC within the ICD-11 is as a separate chapter dealing with symptoms and/or disorders regarding sexual and gender health. This was the overall first choice for NL participants and second choice for UK participants, after the use of a Z-code. The difference reflects the fact that in the UK, Z-codes carry no negative implications for reimbursement of treatment costs. These findings highlight the challenges faced by the WHO in their attempt to integrate research findings from different countries, with different cultures and healthcare systems in their quest to create a manual that is globally applicable.