Study protocol

Assessment, Management and Outcomes for children and young people referred to a National Gender Identity Development Service

Background:

Some children and young people can experience significant levels of gender related distress in their course of their development. This distress is said to arise 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 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. There have also been some significant changes in the group of young people referred, including an increase in the number of birth registered females being referred and an over representation of young people who have traits or a diagnosis of autistic spectrum condition (1). There is a limited and contested evidence base with which to inform current or future provision. Consequently, there is an important need to understand the needs of this changing population, identify the different management options and assess outcomes for young people who experience gender related distress.

This secondary data analysis study of linked healthcare data is part of a programme of academic research (including a series of systematic reviews and a primary qualitative study) to inform an independent review of gender identity development services for young people, reporting to NHS England, led by Dr Hilary Cass (https://cass.independent-review.uk/).

This study will use data that is collected within the NHS, including data from the Tavistock Gender Identity Development Service, hospital wards, outpatient clinics and emergency departments and adult gender identity clinics to assess the intermediate and longer-term outcomes for children and young people referred to the GIDS service. We will look at changing features of these children, e.g. age at referral, co-occuring diagnoses of autism and/or other mental health difficulties and assess if some groups of children are more likely to follow a medical approach to managing their gender related distress, and patterns of longer-term outcomes including successful transition, detransition and mental health outcomes.

This data should provide children and families more information on the different pathways through care to manage their gender–related distress and also provide evidence of for clinicians and policy makers delivering services for these children and young people.

Study Aim

To examine the changing epidemiology of gender related distress in children and young people, in addition to the appropriate social, clinical, psychological and medical management.

Study Objectives

To describe the clinical and demographic characteristics of this population of children and their clinical management in the GIDS service; and
To assess the intermediate outcomes of this population of children utilising national healthcare data.

For more information, including the complete project plan, view the study protocol (PDF , 430kb).