As the demand for specialised healthcare continues to grow for transgender young people, Associate Professor Michelle Telfer and Associate Professor Ken Pang are leading the way with vital research to benefit patients through the Trans20 study.
Being gender diverse, including identifying as transgender, is when a person has a gender identity that differs from the sex they were assigned at birth. Many transgender young people experience gender dysphoria, which is the medical term that describes the distress in identifying as another gender. In Australia, societal attitudes to gender diversity have become more understanding, however there remains stigma and discrimination, particularly for young people. Australian data shows 80 per cent of transgender young people self-harm and 48 per cent attempt suicide before the age of 24.
In 2003, the RCH received their first request from a transgender young person to support them and provide medical care relating to their gender identity. Since that time, demand for care has significantly increased, with 473 referrals in 2020. With the support of the RCH Foundation, the Gender Service was established in 2012, led by Associate Professor Michelle Telfer, Director of Adolescent Medicine. The Gender Service provides holistic, family centred care through a multidisciplinary team of clinicians from across the hospital.
In 2017, the Trans20 study was formed as the first comprehensive longitudinal study of transgender and gender diverse children and young people in Australia.
“As a relatively new area of healthcare, there are important knowledge gaps to address to ensure our clinical work is as safe and effective as possible,” said Ken, lead on the Trans20 study.
“Between 2017 and 2020 we developed the study cohort of 630 patients and families from the Gender Service who we’ll follow up over 20 years to obtain long term data. We hope that by asking personal questions, we’re going to get significant information back to help transgender young people not just in Victoria, but across the country and internationally,” said Michelle.
Data for the Trans20 study is collected through online surveys sent to patients and families before assessment, then at regular intervals throughout their care. Questions focus on gender identity, mental health, physical health, quality of life, education, and family functioning.
Responses from the surveys are integrated into the research database, then any clinically relevant information goes into the patient’s EMR so clinicians can use it to improve care for patients.
“The Gender Service combines our clinical expertise, research expertise as well as our work in education and advocacy to provide comprehensive care. It has been recognised internationally because of that integration and our ability to lead the way as Ken has done with the Trans20 study,” said Michelle.
This study has been made possible through the generosity of fundraisers Friends of Transcend, and The Hugh D.T. Williamson Foundation who fund two research positions, The Hugh D.T. Williamson Foundation Trans20 Principal Research Fellow, held by Ken, and The Hugh D.T. Williamson Foundation Trans20 Research Fellow, shared by Dr Michelle Tollit and Dr Carmen Pace.
Ken has been involved in the Gender Service since 2015, having moved from immunology and genomics research to transgender healthcare research to make an impact on patient care. Being named The Hugh D.T. Williamson Foundation Trans20 Principal Research Fellow means Ken has dedicated research time to lead the Trans20 study while continuing his patient-facing work at the Gender Service.
“Receiving The Hugh D.T. Williamson Foundation Trans20 Principal Research Fellowship was crucial in allowing me to continue my research in transgender health. By funding these positions, the RCH Foundation and its supporters play a pivotal role in translating ground-breaking research into the hospital’s excellent clinical care across campus,” said Ken.
In July 2021, research findings using the Trans20 data was released to international acclaim. The research focused on outcomes before and after the Gender Service established an innovative clinic to manage its growing waitlist, known as First Assessment Single Session Triage (FASST).
The study found the FASST clinic reduced specialist wait times by 10 months and led to improvements in rates of depression and anxiety for trans young people.
“Our research findings on the FASST clinic received extensive media interest in Australia and internationally. It is just one example of the Trans20 data coming to fruition,” said Ken.
“Many other transgender health services are facing long waitlists – in some cases several years – and these findings will hopefully provide a model of care for others to help deal with this.”
Michelle and Ken credit the RCH Foundation and generous supporters like The Hugh D.T. Williamson Foundation and fundraisers Friends of Transcend for making these research outcomes possible.
“Without philanthropic support there wouldn’t be a Trans20 study. As an ambitious longitudinal study, getting funding can be difficult. This year we were able to leverage this support to attract further funding through the National Health and Medical Research Council (NHMRC) but that would never have happened without initial philanthropic support,” said Ken.
“We are grateful to the RCH Foundation who have stood beside us, enabling us to do this research to build an evidence base for what we’re doing,” said Michelle.
Led by Ken, Michelle and their team, the insights and evidence gathered through Trans20 has the power to transform the experience of transgender young people and improve their long term physical and mental outcomes now and into the future.