International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q
Abstract Background To meaningfully understand outcomes of gender-affirming care, patient-reported outcome measures (PROMs) that are grounded in what matters to individuals seeking care are urgently needed. The objective of this study was to develop a comprehensive PROM to assess outcomes of gender-...
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SpringerOpen
2024-11-01
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| Series: | Journal of Patient-Reported Outcomes |
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| Online Access: | https://doi.org/10.1186/s41687-024-00785-x |
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| author | Manraj N. Kaur Shane D. Morrison Shelby L. Kennedy Tim C. van de Grift Astrid Højgaard Amalie Lind Jacobsen Natasha Johnson Margriet G. Mullender Lotte Poulsen Thomas Satterwhite Richard Santucci John Semple Charlene Rae Kinusan Savard Jens Ahm Sørensen Danny Young-Afat Andrea L. Pusic Anne F. Klassen |
| author_facet | Manraj N. Kaur Shane D. Morrison Shelby L. Kennedy Tim C. van de Grift Astrid Højgaard Amalie Lind Jacobsen Natasha Johnson Margriet G. Mullender Lotte Poulsen Thomas Satterwhite Richard Santucci John Semple Charlene Rae Kinusan Savard Jens Ahm Sørensen Danny Young-Afat Andrea L. Pusic Anne F. Klassen |
| author_sort | Manraj N. Kaur |
| collection | DOAJ |
| description | Abstract Background To meaningfully understand outcomes of gender-affirming care, patient-reported outcome measures (PROMs) that are grounded in what matters to individuals seeking care are urgently needed. The objective of this study was to develop a comprehensive PROM to assess outcomes of gender-affirming care in clinical practice, research, and quality initiatives (the GENDER-Q). Methods Internationally established guidelines for PROM development were used to create a field test version of the GENDER-Q. In-depth interviews were conducted from December 2018 to March 2020 with youth and adults aged 16 years and older who were seeking or had received gender-affirming care at outpatient clinics providing gender-affirming care located within tertiary care centers or communities in Canada, Denmark, the Netherlands or the US. Data were analyzed and used to develop a conceptual framework and an item pool, which was used to develop preliminary scales. Between February 2021 to November 2021, iterative feedback was sought from clinicians and patient participants on the scales and used to refine or develop new scales. The revised scales were pilot-tested using a crowd-sourcing platform between February 2022 and April 2022. Results Data from interviews with 84 participants (aged 34 ± 14 years) resulted in a conceptual framework of the GENDER-Q with 13 domains measuring health-related quality of life, sexual, urination, gender practices, voice, hair, face and neck, body, breasts, genital feminization, chest, genital masculinization, and experience of care. Preliminary versions of 44 scales were developed covering most concepts in the conceptual framework. Iterative feedback was obtained from clinician experts (4 to 37 experts per scale; response rate, 67%) and 7–14 patient participants (depending on scale). All scales were refined, and 15 new scales were developed, resulting in 55 scales in the field test version of the GENDER-Q. In total, 601 transgender and gender diverse (TGD) people (aged 25 ± 6 years) participated in the pilot field test and the data were used to make changes to the field test survey. Conclusion The GENDER-Q was developed using extensive input from TGD individuals and clinician experts and represents the most comprehensive set of independently functioning scales that are available to date. An international field test of the GENDER-Q was completed in 2024 and the GENDER-Q is available for use in patient care, clinical research and quality improvement efforts. |
| format | Article |
| id | doaj-art-fdbd1c949c954b818cfd6e0f429d2c7d |
| institution | Kabale University |
| issn | 2509-8020 |
| language | English |
| publishDate | 2024-11-01 |
| publisher | SpringerOpen |
| record_format | Article |
| series | Journal of Patient-Reported Outcomes |
| spelling | doaj-art-fdbd1c949c954b818cfd6e0f429d2c7d2024-11-24T12:28:27ZengSpringerOpenJournal of Patient-Reported Outcomes2509-80202024-11-018111610.1186/s41687-024-00785-xInternational study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-QManraj N. Kaur0Shane D. Morrison1Shelby L. Kennedy2Tim C. van de Grift3Astrid Højgaard4Amalie Lind Jacobsen5Natasha Johnson6Margriet G. Mullender7Lotte Poulsen8Thomas Satterwhite9Richard Santucci10John Semple11Charlene Rae12Kinusan Savard13Jens Ahm Sørensen14Danny Young-Afat15Andrea L. Pusic16Anne F. Klassen17Brigham and Women’s Hospital, Harvard Medical SchoolDivision of Plastic Surgery, Department of Surgery, University of WashingtonDepartment of Pediatrics, McMaster UniversityDepartment of Plastic Reconstructive and Hand Surgery, Center of Expertise on Gender Dysphoria, Amsterdam Public Health Research Institute, VU University Medical CenterSexological Center, Center for Gender, Center for Rape Victims, Aalborg University HospitalResearch Unit for Plastic Surgery, University of Southern Denmark and Odense, Denmark and OPEN, Odense Explorative Patient NetworkDepartment of Pediatrics, McMaster UniversityDepartment of Plastic Reconstructive and Hand Surgery, Center of Expertise on Gender Dysphoria, Amsterdam Public Health Research Institute, VU University Medical CenterResearch Unit for Plastic Surgery, University of Southern Denmark and Odense, Denmark and OPEN, Odense Explorative Patient NetworkAlign Surgical Associates Inc.Crane CenterDivision of Plastic, Reconstructive and Aesthetic Surgery, University of TorontoDepartment of Pediatrics, McMaster UniversityFleming College - EmeritusResearch Unit for Plastic Surgery, University of Southern Denmark and Odense, Denmark and OPEN, Odense Explorative Patient NetworkDepartment of Plastic Reconstructive and Hand Surgery, Center of Expertise on Gender Dysphoria, Amsterdam Public Health Research Institute, VU University Medical CenterBrigham and Women’s Hospital, Harvard Medical SchoolDepartment of Pediatrics, McMaster UniversityAbstract Background To meaningfully understand outcomes of gender-affirming care, patient-reported outcome measures (PROMs) that are grounded in what matters to individuals seeking care are urgently needed. The objective of this study was to develop a comprehensive PROM to assess outcomes of gender-affirming care in clinical practice, research, and quality initiatives (the GENDER-Q). Methods Internationally established guidelines for PROM development were used to create a field test version of the GENDER-Q. In-depth interviews were conducted from December 2018 to March 2020 with youth and adults aged 16 years and older who were seeking or had received gender-affirming care at outpatient clinics providing gender-affirming care located within tertiary care centers or communities in Canada, Denmark, the Netherlands or the US. Data were analyzed and used to develop a conceptual framework and an item pool, which was used to develop preliminary scales. Between February 2021 to November 2021, iterative feedback was sought from clinicians and patient participants on the scales and used to refine or develop new scales. The revised scales were pilot-tested using a crowd-sourcing platform between February 2022 and April 2022. Results Data from interviews with 84 participants (aged 34 ± 14 years) resulted in a conceptual framework of the GENDER-Q with 13 domains measuring health-related quality of life, sexual, urination, gender practices, voice, hair, face and neck, body, breasts, genital feminization, chest, genital masculinization, and experience of care. Preliminary versions of 44 scales were developed covering most concepts in the conceptual framework. Iterative feedback was obtained from clinician experts (4 to 37 experts per scale; response rate, 67%) and 7–14 patient participants (depending on scale). All scales were refined, and 15 new scales were developed, resulting in 55 scales in the field test version of the GENDER-Q. In total, 601 transgender and gender diverse (TGD) people (aged 25 ± 6 years) participated in the pilot field test and the data were used to make changes to the field test survey. Conclusion The GENDER-Q was developed using extensive input from TGD individuals and clinician experts and represents the most comprehensive set of independently functioning scales that are available to date. An international field test of the GENDER-Q was completed in 2024 and the GENDER-Q is available for use in patient care, clinical research and quality improvement efforts.https://doi.org/10.1186/s41687-024-00785-xGender-affirming careTransgenderGender diversePatient-reported outcome measurePatient-reported outcomesTop surgery |
| spellingShingle | Manraj N. Kaur Shane D. Morrison Shelby L. Kennedy Tim C. van de Grift Astrid Højgaard Amalie Lind Jacobsen Natasha Johnson Margriet G. Mullender Lotte Poulsen Thomas Satterwhite Richard Santucci John Semple Charlene Rae Kinusan Savard Jens Ahm Sørensen Danny Young-Afat Andrea L. Pusic Anne F. Klassen International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q Journal of Patient-Reported Outcomes Gender-affirming care Transgender Gender diverse Patient-reported outcome measure Patient-reported outcomes Top surgery |
| title | International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q |
| title_full | International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q |
| title_fullStr | International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q |
| title_full_unstemmed | International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q |
| title_short | International study to develop a patient-reported outcome measure to evaluate outcomes of gender-affirming care - the GENDER-Q |
| title_sort | international study to develop a patient reported outcome measure to evaluate outcomes of gender affirming care the gender q |
| topic | Gender-affirming care Transgender Gender diverse Patient-reported outcome measure Patient-reported outcomes Top surgery |
| url | https://doi.org/10.1186/s41687-024-00785-x |
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