Some children experience significant levels of gender related distress in the course of their development. This distress arise’s from a persistent mismatch between a young person’s felt gender identity and the sex they were registered/assigned at birth .
The numbers of children referred to the Tavistock and Portman’s Gender Identity Development Service (GIDS) - the only NHS funded service these children in England - have risen markedly over the last decade, resulting in lengthy waiting times and uncertainty for children and their families. Research in this area is limited (and also contested) and we lack good evidence to inform healthcare provision to help children who experience gender dysphoria . Consequently, it is very important that we understand the needs of this changing population, describe the different management options and assess outcomes for children who have experienced and reported gender related distress. Most previous research has focused on specialist clinics with little information on primary care.
This study will use data routinely collected within the NHS to assess the intermediate outcomes for children with gender dysphoria. We will look at changing characteristics of these children, e.g. age at diagnosis, co-occurring diagnoses of autism and/or other mental health difficulties, and assess if their mental health outcomes are different to other groups of children with complex conditions e.g. autism or eating disorders.
This research should give children and families more information on the different pathways through care to manage their gender–related distress and also provide evidence for clinicians and policy makers.
The numbers of children and young people referred to the Tavistock and Portman’s Gender Identity Development Service (GIDS) - the only NHS funded service for young people with gender related distress in England and Wales - have risen markedly over the last decade, resulting in lengthy waiting times and uncertainty for young people and their families [2, 3]. Additionally GIDS, as well as many other international paediatric centres, have published papers documenting a marked increase in referrals of adolescent birth-registered females over recent years [4, 5] and an over-representation of children with autism or autistic spectrum traits [1] . Recent NICE reviews on the medical treatment of these children highlighted a lack of evidence of effectiveness and low quality of the published literature. There is also a lack of evidence on outcomes for these children and adolescents and no published data on presentation in primary care.
This study aims to utilise linked primary and secondary data from the CPRD to answer the following research questions in order to provide children and families information on outcomes and inform future service provision
RQ1 – What is the incidence of children with gender dysphoria and how has this changed over time?
RQ2 – What is the incidence of co-occurring autism in children with gender dysphoria?
RQ3 - How has prescribing of puberty blockers and hormones changed over time?
RQ4 - What is the incidence of mental health conditions and how do these compare with other children?
RQ5 - What is the incidence of self harm and how do these compare with other children with and without other complex conditions ?
RQ6 – What is the incidence of obesity and smoking and how do these compare with other children?
1. Incidence of gender dysphoria in children and young people and trends over time
2. Incidence of co-occurring conditions e.g. autism
3. Trends in prescribing of puberty blockers and cross sex hormones.
4. Continuation of puberty blockers or cross sex hormones
5. Frequency of Mental health conditions in comparison with other groups of children
6. Frequency of self harm in comparison with other groups of children.
7. Frequency of obesity and smoking in comparison with other groups of children
Tim Doran - Chief Investigator - University of York
Tim Doran - Corresponding Applicant - University of York
Catherine Hewitt - Collaborator - University of York
Karl Atkin - Collaborator - University of York
Ruth Hall - Collaborator - University of York
Stuart Jarvis - Collaborator - University of York
Trilby Langton - Collaborator - University of York
HES Accident and Emergency;HES Admitted Patient Care;HES Outpatient;ONS Death Registration Data;Patient Level Index of Multiple Deprivation;Practice Level Index of Multiple Deprivation