Research Programme

For people to feel confident in the conclusions and recommendations the Review makes, it needs to be evidence-based and incorporate the lived experiences of children and young people, their families, and the professionals working to support them.

The research streams have been planned to achieve that end and should provide the Review with the best available collation of published evidence, and qualitative and quantitative research.

Literature review (systematic review)

As a first step we are commissioning a broad-based literature review, which will interface with our evidence gathering from the professional community.

This will examine the changing epidemiology (demographic profile) of gender dysphoria in children and young people, as well as the appropriate social, clinical, psychological and medical management.

We are aware that although there have been a lot of publications on this subject, there are still gaps and weaknesses in the evidence base. We anticipate that there is the potential to fill some of the evidence gaps through our commissioned research.

Please find the systematic review protocol for the literature review here.

Quantitative research

Quantitative research focuses on the collection and analysis of data to uncover patterns and quantify problems. It helps to answer questions like, for example, how many people have a particular outcome over time, or a response to medical intervention.

The Review’s interim report highlighted that one of the major difficulties with understanding how to improve NHS services for this group of children and young people is the lack of quality data (as recently highlighted by two NICE evidence reviews).  In particular, little is known about the medium- and longer-term outcomes for children and young people receiving NHS support and/or treatment.

The Review’s quantitative research programme, led by the University of York, aims to improve the level and quality of evidence, enabling the Review and the NHS to have a better understanding of the best treatment approaches for this population of children and young people. 

In order to support every child or young person exploring their gender identity or experiencing gender dysphoria to get on a pathway that is appropriate for them as an individual, it is important that we understand the different pathways taken and who might need them.  The research will aim to do this by tracking the journeys of young people referred to the Gender Identity Development Service (GIDS) at the Tavistock and Portman NHS Foundation Trust through the system to provide a population-level evidence base of the different pathways people take, and their outcomes.

Health Research Authority approved study protocol.

Clinical Practice Research Datalink (CPRD)

Quantitative research: Epidemiology & Outcomes in Children with Gender Dysphoria

Summary:

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. 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 and an over-representation of children with autism or autistic spectrum traits.  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 Clinical Practice Research Datalink (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 – How many children continue puberty blockers or cross sex hormones?
RQ5 –  What is the incidence of mental health conditions and how do these compare with other children?
RQ6 –  What is the incidence of self harm and how do these compare with other children  with and without other complex conditions ?
RQ7 – What is the incidence of obesity and smoking and how do these compare with other children?

Qualitative research

Qualitative research focuses on the collection and analysis of non-numerical data (text, video, audio) to understand different people’s experiences, views and opinions, to explore issues and generate new ideas.

The Review has commissioned a participative, qualitative research project with the principle aim being to understand the full range of outcomes for young people with gender dysphoria. The research will seek to capture young people’s perspectives on their journeys, including into adulthood, and their views on how services could and should be delivered in the future. Perspectives will also be gathered from parents and carers, professionals delivering services, teaching staff, commissioners of services and other relevant individuals.

All research in the NHS is looked at by an independent group of people, called a Research Ethics Committee, to protect your interests. This requires the research team to produce a structured protocol outlining how they will do research. This study has been reviewed by the Health Research Authority and has received formal ethical approval (IRAS Project ID: 306023; protocol reference 1576699; REC Ref: 21/SW/018).

• Health Research Authority approved study protocol

Survey of gender clinics

Summary:

The survey of gender clinics for children and adolescents across the UK and EU-15+ countries aims to identify:

• The range of services provided across a group of countries with similar health services.
• Consistency/divergence in practice.

Integration of findings

In recognition that not all the published evidence is likely to be of high enough quality to form the sole basis for our recommendations, a consensus development approach will be used to synthesise the published evidence and research outputs of the academic work with stakeholder submissions and expert opinion.