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Barriers to Patient-Reported Outcomes Measures for Gender-Affirming Care

Using patient-reported outcomes measures that are not validated for gender-affirming care and creating burden for both patients and administrators are key barriers to using these measures.

Gender-affirming care offers a great use case for implementing patient-reported outcomes measures (PROMs), but PROMs for gender-affirming care need a bit of a tune-up before that can fully happen, per research published in JAMA Network Open.

The study, completed by a group of researchers from the UK and Canada, showed that adopting PROMs that have been validated for gender-affirming care and creating a system that does not create administrative complexity or burden still get in the way of rolling out PROMs for gender-affirming care.

PROMs look at how a medical procedure impacts a patient’s functional status and quality of life. PROMs might look at how patients can move around in the everyday life by asking questions such as whether patients can carry their own groceries or walk one or two city blocks. PROMs also ask about how the procedure impact quality of life, a key measure of patient satisfaction.

All said, PROMs are supposed to help open up conversations about the patient experience of care, ideal clinical outcomes, and the patient-provider relationship.

Gender-affirming care makes for a great case study in collecting PROMs, the researchers said.

“Implementation of PROMs can improve gender-affirming care through regular monitoring of patient satisfaction (through patient-reported experience measures) and facilitate studies of treatment effectiveness and cost-effectiveness, supporting access to gender-affirming care,” they said in the study’s introduction.

“Well-conducted implementation of relevant and high-quality PROMs may also provide evidence and measurement of quality and standard of care received by patients; drive patient-centered care through improving communication between patients and clinicians; guide shared decision-making and facilitate open dialogue between clinicians and patients, challenging bias where appropriate; and inform service development and improvement,” the researchers added.

But in a literature review of 286 studies, which represented more than 85,000 transgender and nonbinary patients from over 30 different countries, the researchers found that there are still hurdles to rolling out PROMs for gender-affirming care.

All said, the team looked at the rollout for 205 different PROMs, and none of them used any sort of scientific theory or method for implementing PROMs surveys into gender-affirming care.

For example, there was limited patient input in designing PROMs for gender-affirming care, and most of the PROMs were for research purposes and thus did not provide ample time for patients to actually fill out PROMs surveys. The researchers suggested a more concerted effort in designing PROMs implementation to improve patient responses.

The researchers also identified some barriers to using PROMs in gender-affirming care, ranging from the quality of the PROMs to patient engagement in filling out the surveys. The burden of administrative complexity also served as a barrier, the team reported.

In terms of PROMs quality, the team recommended using PROMs that have been credentialed for gender-affirming care, like the Gender Congruence and Life Satisfaction Scale, the Trans Woman Voice Questionnaire, or the iTransQoL.

And to improve patient engagement during PROMs survey collection, the team said stronger patient-provider communication on the topic will help patients understand the purpose of PROMs, how they will be used, and how the information will be kept private and secure. Using AI to reduce the length of PROMs surveys and ensuring PROMs surveys do not reinforce a gender binary will also be key.

Finally, automating PROMs collection and scoring may help reduce the administrative burden and complexity that has gotten in the way of using PROMs in the past, the team suggested.

There are some successes in PROMs for gender-affirming care, the team said. Key enablers included using validated PROMs for gender-affirming care, adding flexibility for in-person or online PROMs reporting, making PROMs surveys shorter, and engaging patients and other key stakeholders in designing PROMs survey rollout.

Still, separate data has shown that only 1 percent of doctors use PROMs in any type of medical care. Understanding the barriers to using PROMs will be key to improving the patient experience of care and patient outcomes.

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