Title: Outcomes and Predictors of Outcome for Children and Young People Referred to UK Gender Identity Development Services: A longitudinal Investigation
Funder: Department of Health and Social Care

Abstract: Gender Identity Health Services for Children and Young People (CYP) have experienced an exponential rise in referrals over recent years both in the UK and worldwide. Services are experiencing an increase not only in overall numbers of referrals but also in the number of younger children and their families referred and changes in the pattern of referral e.g. increasing numbers who have socially transitioned (i.e. where a child presents to other people as a member of their experienced gender e.g. wearing clothes and using pronouns of that gender) and greater numbers of referrals of assigned females at birth. Current lack of research in the field means that when CYP and their families present to services it is not possible to have a fully informed conversation about how gender identity is likely to develop over time in childhood and adolescence, the factors that influence whether a CYP will experience ongoing dysphoria (i.e. distress regarding the mismatch between the sex assigned at birth and gender identity) and the factors that influence whether a CYP will go on to choose medical treatments e.g. hormone blockers to pause puberty and later cross sex hormones and potentially surgery to transition to their preferred gender. This current lack of evidence leaves CYP, their parents and NHS services with many dilemmas regarding how best to provide care and support which will facilitate CYP and their families in making individualized decisions likely to lead to optimal outcomes for them in terms of psychological health, wellbeing and quality of life. _x000D_ This programme of research seeks to address this lack of evidence and involves four interlinked studies 1) An evidence synthesis/systematic review of measures relevant to the assessment of CYP referred to GID services and the assessment of outcome and the predictors of outcome over the immediate and longer-term; 2) Secondary data analysis of 8 years of data in clinic databases both in the UK and the Netherlands to investigate factors influencing care pathways, costs and outcomes for CYP as well as cultural differences in the pattern and profile of referrals; 3) a four year prospective study of the entire cohort of children and adolescents up to age 14 referred to GID services to examine what factors predict or influence a) physical intervention as a treatment choice b) continuing Gender Dysphoria c) psychological health, physical health, wellbeing and quality of life over time; 4) a longitudinal qualitative study to explore experiences of living with questions regarding gender identity from the perspective of CYP and their parents, and their experiences of gender identity health services. _x000D_ The UK Gender Identity Service for CYP and their families is the largest such service in the world and this combined with the increase in referrals in recent years means that it is uniquely positioned to undertake research of this kind. The research will importantly investigate outcomes over time whether CYP and their families remain in contact with NHS services or not, thereby investigating outcomes for the entire cohort of CYP, encompassing those in receipt of physical (hormone/endocrine) treatments and those not receiving such interventions. The findings generated from this research will enable services to provide better, more individualized care, which will provide immediate benefits to patients and their families.

Lay abstract: What is the background to this research?_x000D_ Emerging data from several countries suggests that gender diversity in children and young people (CYP) is more common than previously thought (1.2% to 2.7%). This is reflected in the significant increase in referrals reported in gender clinics across a number of countries, including in the UK. While not all gender-diverse CYP will experience gender dysphoria (that is, the distress associated with a mismatch between the sex assigned at birth and gender identity) a significant proportion do. The available evidence suggests that gender dysphoria is further associated with a range of negative mental and physical health outcomes, including depression, anxiety, suicidality and substance abuse. Current treatment in the NHS for CYP experiencing ‘Gender dysphoria’ is aimed at alleviating dysphoric feelings and improving psychological wellbeing. However, the evidence base on which the current treatment protocols are based is widely acknowledged to be both limited and shifting. _x000D_ A particular gap in the evidence, both in the UK and internationally, relates to children/younger adolescents presenting to services for which there is minimal research evidence to inform questions regarding likely trajectories and outcomes particularly in the context of: a) physical treatments (e.g. hormone blockers to suppress the onset of puberty); b) social transition (where a child presents to other people as their experienced gender e.g. using preferred gender pronouns) and; c) co-occurring ASD. _x000D_ What are we aiming to do?_x000D_ We aim to understand the key issues children, young people and their families face when accessing GID services. We wish to understand more about the factors that lead some children to experience ongoing distress about their gender development while for others their distress subsides over time. We are also interested in the factors that influence whether a young person will choose to have medical treatment with hormone blockers to pause puberty or not. This is an important question for the NHS as most young people who opt for hormone blocking treatment to suppress puberty will later choose to have further treatment with hormones to enable them to transition to their preferred gender. We are particularly keen to know more about how the decisions young people and their families make later affect their quality of life, physical health and psychological wellbeing. _x000D_ How are we going to do it? _x000D_ We are going to speak to experts in the UK and abroad as well as searching the research literature in order to select the best tools and measures to use in a study that will follow children, young people and their families over time. As part of this study we will also speak to young people and their families about their experiences and the outcomes that matter to them and how this may or may not change over time. We will also look at the outcomes and costs for young people who have used NHS and Dutch services in the past to examine whether there is anything we can learn from this. _x000D_ What are the benefits of doing this research?_x000D_ The UK GID service for children and young people is the largest such service in the world and this study will be the largest study of its kind to date. We anticipate that there will be great interest in the findings in the UK and elsewhere and that the study will generate much needed evidence about outcomes for young people and their families and thereby enable services to provide better, more individualized care.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;8.1 ORGANISATION AND DELIVERY OF SERVICES
Health categories: MENTAL HEALTH