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      He/She/They - gender inclusivity in developing and using health-related questionnaires: a scoping review

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          Abstract

          Purpose

          To ensure the recognition and participation of all potential respondents in health research, surveys and care, including LGBTQIA + broadly, and trans people, specifically, the use of inclusive language should be considered. This scoping review aimed to identify and describe strategies considered for gender inclusivity in development and use of health questionnaires and Patient Reported Outcomes Measures (PROMs).

          Methods

          A systematic search of peer reviewed publications between January 2000 and September 2022 was conducted in Scopus, ProQuest Central, Ovid Medline (PubMed and EBSCO). Two reviewers independently screened identified publications titles and abstracts, followed by full text screening and data extraction from eligible articles.

          Results

          The search of over 5000 publications, retained 18; most acknowledged gaps in representation and advocated for gender-inclusive language. Eight articles discussed exclusion from health care and health research for gender minority groups due to the use of gendered language. Improved reliability, validity and response rates were associated with the use of gender-neutral language in seven articles. Only one article reported finding irritation among cisgender males when non-binary gender response options were used. One paper, focussing on instruments for Rheumatoid Arthritis, discussed gaps in representation if diverse gender identities were not considered when developing PROMs.

          Conclusion

          This scoping review points to the importance of adopting gender-inclusive language in health questionnaires and surveys to reduce the risk of excluding gender minority groups. Despite finding very few specific examples of how others have used gender-inclusive language in health questionnaires, many strengths of gender-inclusive language usage were identified.

          Abstract

          People from the LGBTQIA + communities are often excluded from health research and from completing heath surveys as they are not able to identify with the questions about male or female genders. This scoping review aimed to examine the literature for any strategies developers of health questionnaires may have come up with to ensure inclusion of all demographic groups. Most of the identified literature highlights the importance of adopting gender-inclusive language in health questionnaires to reduce the risk of excluding gender minority groups. Despite many strengths of gender-inclusive language usage being identified, only a few specific examples were identified of how others have used gender-inclusive language in health questionnaires.

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          Most cited references34

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          Scoping studies: towards a methodological framework

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            Standards of Care for the Health of Transgender and Gender Diverse People, Version 8

            Abstract Background: Transgender healthcare is a rapidly evolving interdisciplinary field. In the last decade, there has been an unprecedented increase in the number and visibility of transgender and gender diverse (TGD) people seeking support and gender-affirming medical treatment in parallel with a significant rise in the scientific literature in this area. The World Professional Association for Transgender Health (WPATH) is an international, multidisciplinary, professional association whose mission is to promote evidence-based care, education, research, public policy, and respect in transgender health. One of the main functions of WPATH is to promote the highest standards of health care for TGD people through the Standards of Care (SOC). The SOC was initially developed in 1979 and the last version (SOC-7) was published in 2012. In view of the increasing scientific evidence, WPATH commissioned a new version of the Standards of Care, the SOC-8. Aim: The overall goal of SOC-8 is to provide health care professionals (HCPs) with clinical guidance to assist TGD people in accessing safe and effective pathways to achieving lasting personal comfort with their gendered selves with the aim of optimizing their overall physical health, psychological well-being, and self-fulfillment. Methods: The SOC-8 is based on the best available science and expert professional consensus in transgender health. International professionals and stakeholders were selected to serve on the SOC-8 committee. Recommendation statements were developed based on data derived from independent systematic literature reviews, where available, background reviews and expert opinions. Grading of recommendations was based on the available evidence supporting interventions, a discussion of risks and harms, as well as the feasibility and acceptability within different contexts and country settings. Results: A total of 18 chapters were developed as part of the SOC-8. They contain recommendations for health care professionals who provide care and treatment for TGD people. Each of the recommendations is followed by explanatory text with relevant references. General areas related to transgender health are covered in the chapters Terminology, Global Applicability, Population Estimates, and Education. The chapters developed for the diverse population of TGD people include Assessment of Adults, Adolescents, Children, Nonbinary, Eunuchs, and Intersex Individuals, and people living in Institutional Environments. Finally, the chapters related to gender-affirming treatment are Hormone Therapy, Surgery and Postoperative Care, Voice and Communication, Primary Care, Reproductive Health, Sexual Health, and Mental Health. Conclusions: The SOC-8 guidelines are intended to be flexible to meet the diverse health care needs of TGD people globally. While adaptable, they offer standards for promoting optimal health care and guidance for the treatment of people experiencing gender incongruence. As in all previous versions of the SOC, the criteria set forth in this document for gender-affirming medical interventions are clinical guidelines; individual health care professionals and programs may modify these in consultation with the TGD person.
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              Transgender-inclusive measures of sex/gender for population surveys: Mixed-methods evaluation and recommendations

              Given that an estimated 0.6% of the U.S. population is transgender (trans) and that large health disparities for this population have been documented, government and research organizations are increasingly expanding measures of sex/gender to be trans inclusive. Options suggested for trans community surveys, such as expansive check-all-that-apply gender identity lists and write-in options that offer maximum flexibility, are generally not appropriate for broad population surveys. These require limited questions and a small number of categories for analysis. Limited evaluation has been undertaken of trans-inclusive population survey measures for sex/gender, including those currently in use. Using an internet survey and follow-up of 311 participants, and cognitive interviews from a maximum-diversity sub-sample (n = 79), we conducted a mixed-methods evaluation of two existing measures: a two-step question developed in the United States and a multidimensional measure developed in Canada. We found very low levels of item missingness, and no indicators of confusion on the part of cisgender (non-trans) participants for both measures. However, a majority of interview participants indicated problems with each question item set. Agreement between the two measures in assessment of gender identity was very high (K = 0.9081), but gender identity was a poor proxy for other dimensions of sex or gender among trans participants. Issues to inform measure development or adaptation that emerged from analysis included dimensions of sex/gender measured, whether non-binary identities were trans, Indigenous and cultural identities, proxy reporting, temporality concerns, and the inability of a single item to provide a valid measure of sex/gender. Based on this evaluation, we recommend that population surveys meant for multi-purpose analysis consider a new Multidimensional Sex/Gender Measure for testing that includes three simple items (one asked only of a small sub-group) to assess gender identity and lived gender, with optional additions. We provide considerations for adaptation of this measure to different contexts.
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                Author and article information

                Contributors
                des.scott@uct.ac.za
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer New York (New York )
                0962-9343
                1573-2649
                29 August 2024
                29 August 2024
                2025
                : 34
                : 1
                : 67-87
                Affiliations
                [1 ]Department of Health and Rehabilitation Sciences, University of Cape Town, ( https://ror.org/03p74gp79) Cape Town, South Africa
                [2 ]Ngāi Tahu Māori Health Research Unit, Division of Health Sciences, University of Otago, ( https://ror.org/01jmxt844) Dunedin, New Zealand
                [3 ]Ministry of Health, ( https://ror.org/03ehgrz61) Ljubljana, Slovenia
                [4 ]Department of General Practice and Rural Health, University of Otago, ( https://ror.org/01jmxt844) Dunedin, New Zealand
                [5 ]Health New Zealand, Te Whatu Ora, National Public Health Service, Te Waipounamu, New Zealand
                [6 ]Department of Sociology and Anthropology, University of Cape Coast, ( https://ror.org/0492nfe34) Cape Coast, Ghana
                [7 ]Department of Medicine, University of Otago, ( https://ror.org/01jmxt844) Christchurch, New Zealand
                Author information
                http://orcid.org/0000-0003-3943-7392
                http://orcid.org/0000-0003-2867-0498
                http://orcid.org/0000-0002-1238-7156
                http://orcid.org/0000-0002-7609-1880
                http://orcid.org/0000-0003-3030-7196
                http://orcid.org/0000-0002-7594-5549
                Article
                3765
                10.1007/s11136-024-03765-2
                11802602
                39207629
                4fd30268-470a-4926-a599-1b63b6a7ebd5
                © The Author(s) 2024

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

                History
                : 14 August 2024
                Funding
                Funded by: University of Cape Town
                Categories
                Review
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                © Springer Nature Switzerland AG 2025

                Public health
                gender inclusive,language,research,health care,advisory group
                Public health
                gender inclusive, language, research, health care, advisory group

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