A host of algorithms used by medics to assess disease risk and help make decisions on treatment are failing to take transgender patients into account, doctors have said.
Many metrics and thresholds in medicine, including ideal body weight, alcohol clearance rates, kidney function and risk of cardiovascular disease vary by gender.
A team of UK doctors and medical students have issued a warning over a lack of evidence as to whether trans patients should be considered for these gender-based scores according to their gender assigned at birth or the gender they have transitioned to – or whether alternative scores are required.
They say the situation could be putting trans patients at risk of situations ranging from receiving the wrong dose of a medication to being denied dialysis for kidney problems.
In an effort to tackle the issue, the team have launched a research initiative called Trans Gap Project.
Dr Michael Niman, a junior NHS doctor and chair of the project, said: “Currently, daily medical decisions involving gender-based scores have limited to no research for the trans community. This means that trans patients are often forgotten about or not considered in the medical world, leading to a significant gap in their access to appropriate medical care.”
Niman said there could be a glibness by the medical community towards trans people in relation to gender-based medical scores. “Common responses I get from clinicians are ‘oh, I hadn’t thought about that,’ ‘does it make a difference?’ [or] ‘there’s not that many [trans people] anyway’,” he said.
However, the team say the ramifications of inappropriate gender-based medical scores can be serious, and the issue is a concern for all trans patients, not just those on hormone replacement therapy.
“The use of inappropriate scores has real-world implications and can result in trans patients being denied access to necessary medical care, being underdosed for antibiotics [or] incorrectly anticoagulated,” said Niman.
The decision to offer statins to a trans patient with a family history of high cholesterol could depend on the gender a clinician uses when scoring the patient for their cardiovascular disease risk, the group say. The choice of gender for scores relating to kidney function could affect whether a trans patient is offered dialysis.
“When scores that haven’t considered trans people are used, patient autonomy is impaired for trans and gender-diverse patients, as they can’t make true informed decisions on their care – which is one of the bioethic pillars,” Niman said.
In some cases, there could be safety concerns. “Clinicians are currently faced with uncertainty regarding the best clinical practice to address these scenarios, owing to a lack of evidence-based guidance,” Niman said. “It is vital clinicians take a vested interest in the research of gender-based scores for the trans community due to the importance of safe practice considerations within the NHS.”
In the first stage of the project, which is almost complete, the team have carried out a series of reviews to examine the current evidence base for six different gender-based medical scores.
Niman said the next stage would involve carrying out surveys of trans people to explore their interactions with the healthcare system. In the final stage, the team hope to take blood samples to unpick how to best apply or adapt medical scoring systems for trans patients.
Members of the trans community who wish to take part in the survey can complete a form on the project’s website.
Dorian Wolfe, a third-year medical student and social media lead for the project, said the healthcare system was failing trans people from the roots up.
“As a patient, much like the majority of the trans community, I have experienced first-hand the transphobia and mistreatment that occurs when healthcare professionals aren’t educated on trans health and inclusion,” he said.
Wolfe said the Trans Gap Project had the potential to change things for the better. “Making healthcare a safer, better-informed, more inclusive space for my community is my main motivation for being involved in this project,” he said. “I don’t want healthcare professionals to just be aware of trans issues, I want them to be able to advocate for their trans patients.”
• This article was amended on 5 May 2023 to correctly refer to “medics” in the subheading and caption, rather than “GPs” as an earlier version said.