Prioritizing Equity: A Call to Implement Freely Available and Accessible Patient-Reported Outcome Measures in Paediatric Gender-Affirming Care

Dear Editor:

We appreciate the engagement with our systematic review of patient-reported outcome measures (PROMs) for paediatric gender-affirming care. The response letter reflects shared commitment to advancing outcome measurement for transgender and gender-diverse (TGD) youth. However, there are critical flaws in the assumptions underlying their approach, which prioritizes developing proprietary PROMs over implementing tools that are already available and immediately implementable, and without the administrative and/or financial hurdles associated with proprietary tools. The community needs an equity driven approach, focused on optimizing, implementing and scaling established tools to ensure timely, inclusive and impactful improvements to care.

The authors’ disclosure of a conflict of interest, tied to potential licensing fees from for-profit studies, highlights a broader concern with proprietary PROM development. Proprietary frameworks, which involve licensing agreements and/or associated fees, are a recurring feature in the development of PROMs across health care fields (1).

This is an important issue because the potential collection of licensing fees from for-profit organizations, such as pharmaceutical companies, risks introducing financial incentives that skew research priorities (2). The emphasis shifts toward developing tools that generate revenue, particularly for industry-sponsored trials, rather than focusing on the immediate needs of underserved populations, such as TGD youth. This model, while commercially viable, risks prioritizing market-driven goals over equity and accessibility. In addition, such models introduce financial and/or administrative barriers that limit the accessibility of these tools, particularly in under-resourced settings. By requiring licensing agreements, proprietary tools introduce hurdles that discourage their adoption, perpetuating inequities in outcomes measurement (3).

The authors fail to mention the GCLS-Y (Gender Congruence and Life Satisfaction Scale Youth), a freely available, open-access tool designed to assess outcomes of gender-affirming care in TGD youth. This tool was developed for and with TGD youth and is psychometrically sound, making it an strong alternative to the PROM the authors are in the process of developing (4). The GCLS-Y does not require licensing agreements or fees, ensuring it is accessible to all researchers and clinicians without financial and/or administrative hurdles. Its absence from their discussion calls for closer examination of the role of conflicts of interest, the completeness of their critique, and their willingness to consider non-proprietary tools that serve a similar purpose. One of the co-authors of their reply contributed to the validation studies of the GCLS-Y, which raises the question of why the tool was excluded from their discussion despite a co-author’s familiarity with it and its alignment with the aim of their discussion (4).

The authors reference a 2018 call by the World Professional Association for Transgender Health to develop reliable, valid and reproducible PROMs (5). In 2024, 6 years later, their PROM remains unavailable, underscoring the need to consider other tools that are available. Failure to do so perpetuates delays in the implementation of accessible solutions that could already be addressing the same goals: improving care for TGD populations.

Existing PROMs, including the ones identified in our systematic review (6), and new ones developed since its publication (i.e., GCLS-Y) (4), offer an immediate opportunity to address care gaps. There are also over 200 PROMs in use in adult gender-affirming care (7), with notable examples including the GCLS (8) and iTransQoL (9). Many of these tools are already validated, widely accessible and capable of capturing key outcomes relevant to TGD populations.

We contend that optimizing, implementing and scaling established tools, rather than developing new ones with overlapping purposes, provide a more practical and impactful approach to advancing care for TGD populations. The development of new tools does little to address the critical systemic barriers that prevent PROMs from being integrated into clinical practice, such as insufficient provider training, workflow integration issues and inadequate data infrastructure (7,10–14). The act of addressing these barriers may allow for tools already freely available, such as the GCLS-Y, to achieve their intended impact, thereby decreasing delays in making meaningful improvements in care.

We look forward to further contributions to this field, especially where efforts are independent of financial interests in specific PROMs, ensuring equitable advancements in outcome measurement for TGD populations.

Abbreviations

Abbreviations
 
• PROM

  Patient-reported outcome measure

 
• TGD

  Transgender and gender diverse

Funding

R.K. is funded by a National Institute for Health and Care Research Doctoral Research Fellowship (NIHR301792). The funder had no role in the design and conduct of the study.

Conflict of Interest

All authors: No reported conflicts of interest. All authors have submitted the ICMJE Form for Disclosure of Potential Conflicts of Interest. Conflicts that the editors consider relevant to the content of the manuscript have been disclosed.

Author contributions

R.K., L.J. and J.R. were involved with conceptualizing the paper. L.J. and R.K. led the writing of the manuscript. L.J., C.C., C.J., E.D., A.C.L., M.S., A.J., J.R. and R.K. were involved with critical revision of the manuscript. All co-authors approve the submission.

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