I have a new peer-reviewed academic article out in the International Journal of Transgender Health, co-authored with my colleagues Cal Horton, Jaimie Veale, Lou Kerley, and Ken Pang.

Pathologising Legacy Measures and over-assessment:
reconceptualising ethical assessment and data collection practices in trans children’s healthcare

The article looks at a range of questionnaires which are in common use internationally in trans youth healthcare. These are designed as a type of data collection tool known as “Patient Recorded Outcome Measures”, or PROMs, in which patients are asked direct questions about their feelings and experiences, to track the outcome of specific treatments.

PROMs are common across healthcare and mental health interventions more generally. You may have experienced this yourself if you have ever seen a therapist, for instance. A widely-used example is GAD-7. This invites patients or clients to use a numerical scale to rate how often they have felt bothered by particular problems, such as “feeling nervous, anxious or on edge”, or “feeling afraid as if something awful might happen”.

If a patient or client fills out a questionnaire such as GAD-7 both before and after receiving a treatment or therapeutic intervention, the care provider can – in theory – test how successful their intervention has been.

In trans healthcare, PROMs have historically been used by clinicians for research purposes, as well as for tracking individual outcomes. This has often been problematic, especially when patients are presented with a great many questions, or where these questions are experienced as pathologising or intrusive. For example, in the mid-2010s the Nottingham Centre for Transgender Health notoriously subjected new patients to 27 pages of apparently mandatory questions, including about seemingly random topics such gaming. This caused a great deal of stress and confusion for people seeking care at the clinic.

However, with specialist trans healthcare provision increasingly facing political threats, many clinics currently present PROMs as necessary to demonstrate the benefits of the care they provide. With this in mind, Cal Horton set out to examine 36 PROMs used in trans youth healthcare, assessing them according to four aspects of pathologisation (authenticating transness, intrusion, delegitimisation, and transnormativity) as well as over-assessment. They then brought their findings to our research team, and we wrote them up collectively. We found that both pathologisation and over-assessment were widespread across a majority of these PROMs. For example:

“Tool BI2 asks children to rate how happy they are with 26 body parts, asking which body parts they would like to surgically change, including body parts that cannot be changed through medical intervention (e.g. hands). These questions do not adopt a trauma-informed approach, and many may be experienced as abusive. Tool BI1, for example, asks how children like to pee and how they feel about looking at their body naked, questions which are clinically unnecessary and likely to be experienced as a significant intrusion of privacy by service users.“

The central argument of our article is that numerous commonly-used PROMs are impacted by a wider legacy of pathologisation in trans health, in which young people especially were treated as objects of clinical curiousity, rather than subjects of care. Since these PROMs are well-established and scientifically “validated”, they continue to be used in clinics which profess to practice forms of affirmative care. We therefore named these “pathologising legacy measures”, and caution against their continued use.

We do recognise that many clinics continue to use pathologising legacy measures out of a genuine desire to evidence necessary, life-saving care in an increasingly hostile political environment. Our ultimately question to these clinics is: at what cost?

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