King's College London

PATHWAYS HORIZON is a research study that aims to understand the care needs and experiences of young people attending the NHS Children and Young People’s Gender Services in England and how these develop and change with time.

The study will last for five and a half years and will explore many life experiences, including quality of life, mental and physical health as well as gender identity. These will be explored with questionnaires completed once per year over the course of the study.

Why is this important?

Gender incongruence is when someone’s gender doesn’t match their sex registered at birth. It can be very upsetting for young people, particularly when they start to go through puberty, developing signs of adult sex characteristics, like breasts, facial hair and voice deepening.

In the UK, there are now many more referrals to gender services than there were 10 or 20 years ago. The young people coming forward today are also different from those in the past, for example, they are often older and more likely to be registered female at birth.

It is not known what medical and non-medical support is most helpful for the young people attending the Gender Services, and which kinds of support and care help which young people.

Most of the existing research was done a long time ago, so it doesn’t explain how young people experience the care that gender services are offering in the NHS currently, or it includes only a small number of people, and so it isn’t helpful for deciding what care is best for young people.

The PATHWAYS HORIZON study will provide more information about the young people currently attending the NHS Children and Young People’s Gender Services and how their health, wellbeing, and experiences change (or not) over time.

How will the study be done?

This is a longitudinal observational study. Longitudinal means that the research follows participants over time to find out what changes and what stays the same. Some young people who join the study early on will be followed for up to five times, over five years. Those who join later may be followed only twice, over two years.

The study may be extended after this funding period to follow young people into adult life, but this has not been confirmed yet. PATHWAYS HORIZON is observational because the research itself does not include any treatment or intervention (although many young people will be receiving care in the Gender Services and possibly other parts of the NHS).

Funding and Study Oversight

The PATHWAYS research study is led by King’s College London and co-sponsored by King’s College London and the South London and Maudsley NHS Foundation Trust. NHS England commissioned and funded the study in partnership with the National Institute for Health and Care Research (NIHR).

The study has undergone a comprehensive review of the science by independent scientists advising NIHR. These include independent academic peer reviewers and NIHR funding committee consideration. It has also undergone checks by regulators and scrutiny by an NHS ethics committee.

The research is overseen by two groups of people who are independent from the research team and the funders. A Data Monitoring and Ethics Committee will check the data and highlight any concerns they have about the quality of the data (such as the amount of missing information) and any concerns about the safety or wellbeing of people taking part.

The Programme Steering Committee will include at least two people with lived experience, as well as scientists, and will advise on the study’s progress overall.

Documents

Horizon Protocol (PDF)

Horizon Easy Read Description (PDF)

Frequently Asked Questions (PDF)