My interest in inequalities in cancer care for the transgender community began after reading an article in the Lancet Oncology in 2015 that discussed cancer risk for this population in the context of HIV, as well as changes to anatomy and physiology through gender-affirming care.
I managed to gain experience observing at the Gender Identity Clinic in London before speciality training and I was offered a paid training role. Being an academic trainee and completing a PhD has given me the flexibility to combine these two specialties, as well as develop research in this area. Being bisexual and teaming up with OUTpatients, the UK's LGBTIAQ+ cancer charity, has influenced my work to look at care for the whole LGBTIAQ+ community.
Current LGBTIAQ+ patient experience
Survey data from the US, UK and elsewhere shows that poorer patient experiences among LGBTIAQ+ communities are often due to communication issues and discrimination. For example, bisexual individuals experience some of the worst support in the UK Cancer Patient Experience Survey.
In other cases, there are medical aspects of care that are delivered poorly, such as inappropriate screening systems for transgender people. Also, when giving medical advice pre- and post- radiotherapy to structures in the pelvis, we may not give the right advice to individuals about abstaining from, and returning to, the types of sex they are having. Sometimes this is about a lack of evidence, as is the case with integrating oncological and gender-affirming care. However, it is more often about a lack of inclusivity on the part of individuals, organisations, clinical systems and policies.
Improve cancer care
Supporting people appropriately starts with good communication. Without this, there is no rapport, and no good care. Ask how people want to be addressed and referred to (for example, name and pronouns), and who they have brought to appointments. Ask how people want parts of their bodies referred to. Also ask if you can record that information on their record and who you can share it with. LGBTIAQ+ people feel like they have to keep 'coming out' and deciding if it's safe to do so.
LGBTIAQ+ healthcare should be a vertical thread running through all undergraduate and postgraduate healthcare training. The same is true for many other aspects of identity, including ethnicity and religious belief, to effectively tailor care. Education needs to go well beyond the basic equality and diversity training to include specific medical and social needs, as well as communication skills. This education should be co-developed with patients and feature in exams.
Cancer prevalence and risks
Some subpopulations of the LGBTIAQ+ community have higher rates of smoking, alcohol use and blood-borne virus infection leading to higher rates of related cancers. However, sexual orientation and gender identity are not well recorded in cancer registries, including in the UK, so we get an incomplete picture. Depending on where an individual lives, they may experience barriers to care and discrimination, which compounds any existing healthcare inequity. We need to investigate this urgently in the UK. Importantly, while hormonal therapy for trans patients will alter their risk profile for hormonally driven cancers such as breast and prostate cancer, it does not tend to inflate figures above those for cisgender people.
Unique healthcare needs
Until recently, many of our information sheets and consent forms only talked about heterosexual sex and the conception of a child by a cisgender man and woman. However, people have a range of sexual practices, relationships and families. In oncology, if we don't ask about this, we may risk patient safety or deny people the chance to have biological children. Thankfully, resources are gradually being updated to facilitate these conversations, but we as clinicians need to catch up. We need to ask about the types of sex people are having and discuss the impacts of our treatment on these activities. Additionally, while gamete storage remains possible for most patients, funding for IVF remains a postcode lottery, especially for LGBTIAQ+ people.
LGBTIAQ+ inclusion in clinical research
To improve the evidence base for LGBTIAQ+ cancer care, we need three key actions:
1. Better recording of sexual orientation and gender identity in routine healthcare data.
2. Better inclusion of LGBTIAQ+ people in clinical trials, which again means recording the data.
3. Bespoke studies across the cancer continuum for LGBTIAQ+ people.
To facilitate actions 1 and 2, we need to educate all healthcare staff on how to ask these questions and why it is important. Additionally, we need to create inclusive environments where LGBTIAQ+ people see themselves represented. I'm pleased to say there is increasing interest from the pharmaceutical industry in incorporating this data routinely into trials and ensuring all their information is gender-neutral and inclusive.
The cornerstone to enabling bespoke studies is appropriate patient and public involvement, ensuring we ask research questions that are important to the community and tackle them in an acceptable way. For example, we run a study called Self-TI, which looks at self-testing for HPV in trans people, an important cancer risk factor. Without our community advisory board, we wouldn't have been able to offer the most comfortable swab options or know how best to advertise the study.
Support groups
There are support groups available, and I've mentioned working with OUTpatients. They started with peer support and have now expanded into patient information, clinician education, policy and campaigning. I work closely with them in research and education projects and am also a trustee.
I also want to highlight the UK Cancer and Transition Service (UCATS), a virtual clinic and multidisciplinary team for trans and gender-diverse patients affected by cancer. UCATS aims to integrate oncological and gender-affirming care, to help support patients and their care teams in shared decision-making. Patients self-refer, as can any clinician. We want to grow this service to provide truly patient-centred care, and develop research, so please send patients our way!
