Implementing patient-reported outcomes measures (PROMs) for gender-affirming care faces barriers such as limited patient input, administrative complexity, and a lack of validated PROMs, according to research published in JAMA Network Open. The study suggests stronger patient-provider communication, the use of validated PROMs, shortening PROMs surveys, and automation may help address these barriers. The implementation of relevant and high-quality PROMs could provide evidence and measurement of the quality and standard of care received by patients and guide shared decision-making.
Gender-affirming care is a crucial aspect of healthcare for transgender and nonbinary individuals. Patient-reported outcome measures (PROMs) are used to determine how medical procedures impact patients’ quality of life and functional status. In the case of gender-affirming care, PROMs can be used to monitor patient satisfaction, evaluate treatment effectiveness and cost-effectiveness, and improve communication between patients and clinicians. However, research published in JAMA Network Open shows that the adoption of PROMs in gender-affirming care faces challenges.
The study was conducted by a group of researchers from the UK and Canada who examined 286 studies involving over 85,000 transgender and nonbinary patients from over 30 different countries. They found that while PROMs could benefit gender-affirming care, there were still hurdles to their implementation. None of the 205 PROMs reviewed used any scientific theory or method for implementing PROMs surveys into gender-affirming care.
One of the barriers to using PROMs in gender-affirming care is the limited patient input in designing the surveys. Most of the PROMs reviewed were for research purposes, and patients did not have enough time to fill them out. This lack of patient input may lead to a lack of response and inaccurate data.
Another barrier is the burden of administrative complexity. Automated PROMs collection and scoring could help reduce the administrative burden and make it easier for patients to fill out the surveys. Additionally, stronger patient-provider communication could help patients understand the purpose of PROMs and how their information will be kept private and secure.
The researchers recommended using validated PROMs for gender-affirming care, such as the Gender Congruence and Life Satisfaction Scale, the Trans Woman Voice Questionnaire, or the Transom. Shortening PROMs surveys and ensuring that they do not reinforce a gender binary will also be essential.
The use of PROMs in any type of medical care is still limited, with only 1% of doctors using them. However, understanding the barriers to using PROMs will be essential in improving the patient experience of care and patient outcomes. The implementation of relevant and high-quality PROMs could provide evidence and measurement of the quality and standard of care received by patients, the guide shared decision-making, and facilitate open dialogue between clinicians and patients.
In conclusion, the implementation of PROMs in gender-affirming care could significantly improve the care provided to transgender and nonbinary individuals. However, there are still challenges to overcome, including the limited patient input in designing the surveys, the burden of administrative complexity, and the need to use validated PROMs for gender-affirming care. Addressing these barriers will be crucial in ensuring that PROMs are effectively implemented and used to improve the patient experience of care and patient outcomes.
