Gender dysphoria in youth: A prospective clinical cohort study

Research idea and purposeGender incongruence is the discrepancy between a person´s perceived gender identity and the gender assigned at birth. When gender incongruence leads to distress or functional impairment, it is referred to as gender dysphoria.

The number of youths seeking care for gender dysphoria in Sweden has quadrupled over the past decade, but knowledge about this group and risks and benefits of various treatments is limited.

The National Board of Health and Welfare and the Swedish Agency for Health Technology Assessment and Assessment of Social Services have called for studies where young people with gender dysphoria are followed prospectively. However, no such studies are currently underway in Sweden, and few studies exist internationally.

The purpose of this project is to improve our knowledge about children and adolescents with gender dysphoria, how they develop over time, what interventions are requested and offered, and the effects of different interventions.Work plan, methods and project realizationWe will establish a large prospective cohort (n = 500–700) of youths (ages 11–17) seeking care for gender dysphoria at two of Sweden´s largest gender dysphoria clinics (KIM in Malmö and KID in Stockholm).

All participants will undergo a systematic initial assessment and will then be followed every six months until they turn 21.

Specific goals are to investigate [1] psychiatric comorbidity, [2] stability and changes in gender identity over time, [3] quality of life over time, [4] what care is offered, [5] somatic and psychosocial consequences of puberty blockers and gender-affirming hormone treatment, and [6] the frequency of and motives for detransitioning.

The project includes quantitative and qualitative components and clinical research procedures are currently being developed and coordinated between the two collaborating sites.

Research funding is sought for a doctoral student and the project leader at KIM in Malmö to develop and implement research procedures, as well as for co-creation with the target group and costs for digital data collection.Social relevance and utilizationIf the project is successfully implemented, it will generate the world´s largest and most well-defined prospective cohort of children and adolescents with gender dysphoria.

The results from the project are expected to have a significant impact on how assessment and treatment for this poorly understood and growing group of children and adolescents should be designed.