212 posters, 10 topics, 5 sessions, 754 authors, 237 institutions

The AAPS 101st Annual Meeting

29 April – 2 May, 2023 | Chicago, IL

D151

The Gender-Q: A Rigorous, Modular, Patient-reported Outcome Measure For Gender-affirming Care

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Poster Presenter

Shane Morrison

Authors

Shane Morrison, Manraj Kaur, Shelby Deibert, Tim van de Grift, Astrid Hojgaard, Amalie Jacobsen, Natasha Johnson, Margriet Mullender, Lotte Poulsen, Thomas Satterwhite, Richard Santucci, John Semple, Charlene Rae, Kinusan Savard, Jens Sorensen, Danny Young-Afat, Andrea Pusic, Anne Klassen

Affiliations

Brigham and Women's Hospital, University of Washington Medical Center, McMaster University, Canada, VU Medical University, Netherlands, Aalborg University Hospital, Denmark, University of Southern Denmark and Odense University Hospital, Denmark, VU University Medical Center, Netherlands, University of Southern Denmark and Odense, Denmark, Align Surgical Associates Inc., Crane Center, Women’s College Hospital, Canada, Fleming College - Emeritus, Canada, Amsterdam University Medical Center, Netherlands, Brigham and Women’s Hospital

Part of Topic

Gender Affirmation

The Gender-Q: A PROM for Teens and Adults Seeking Gender Affirming Care

¹Kaur MN, ²Morrison SD, ³Deibert S, ⁴Van De Grit TC, ⁵Højgaard A, ⁶Jacobsen AL, ¹Johnson N, ⁴Mullender MG, ⁶Poulsen L, ⁷Satterwhite T, ⁸Santucci R, ⁹Semple J, ³Rae C, ¹⁰Sarvard K, ⁶Sørensen JA, ¹¹Young-Afat D, ¹Pusic AL, ³Klassen AF

¹Brigham and Women’s Hospital, Boston, US; ²University of Washington Medical Center, Seattle, US; ³McMaster University, Hamilton, CA; ⁴University Medical Center, Amsterdam, NL; ⁵Aalborg University Hospital, Aalborg, DK; ⁶University of Southern Denmark and Odense University Hospital, Odense, DK; ⁷Align Surgical Associates, San Francisco, US; ⁸Crane Center, Austin, US; ⁹University of Toronto, Toronto, CA; ¹⁰Fleming College –Emeritus, Noelville, CA; ¹¹Amsterdam University Medical Center, Amsterdam, NL

Background

•Gender-affirming care is defined as surgical and non-surgical treatments that aim to align an individual’s body with their gender identity. [1]

•Patient-reported outcome measures (PROMs) are questionnaires that assess how patients feel and function and help us measure outcomes that matter to patients.

•Four systematic reviews of PROMs in gender-affirming surgery have concordantly identified a lack of comprehensive, rigorously developed and validated PROMs specific to gender-affirming care. [2-5]

•A gender-affirming care-specific PROM is crucial to understanding the health-related quality of life (HRQL) impact of treatments and interventions from the patient perspective and conducting clinical effectiveness research.

Objective

•Develop a methodologically rigorous, globally applicable, patient-driven PROM that measures what matters to individuals seeking gender-affirming care – called the GENDER-Q.

Methods

•Internationally established guidelines for PROM development were used to develop the GENDER-Q. (See [6] for Protocol)

•Sample: Individuals (16 years or older) seeking or receiving gender-affirming care were recruited from high-volume clinics in the United States, Canada, Denmark and the Netherlands.

Results

STEP 1: COGNITIVE INTERVIEWS (n=21)

•Most respondents were White (76%), 30-39 years old (43%), transfeminine (50%), college-educated (57%), and from the U.S. (76%)

•95 items were found to be relevant from BREAST-Q, BODY-Q and FACE-Q, and included in the GENDER-Q.

STEP 2: QUALITATIVE INTERVIEWS (n=84)

•Most respondents were White (63%), 20-29 years old (27%), transmasculine (50%), college-educated (43%), and from the U.S. (37%).

•Most participants sought masculinizing procedures (56%).

•An item pool and preliminary scales were developed.

STEP 4: PILOT FIELD TESTS (n=601, 30 countries)

ACCEPTABILITY OF THE GENDER-Q

•Most found GENDER-Q to be understandable, thorough, respectful, and safe (Table 1).

Conclusions

•The final field test version of GENDER-Q comprises 53 independently functioning scales across 4 main domains (Figure 2).

•The GENDER-Q is highly responsive to calls for a rigorous, validated, gender-affirming, care-specific PROM by clinical and academic communities.

•GENDER-Q was developed using extensive input from TGD people and clinician experts.

•It represents the most comprehensive set of independently functioning scales that are available to date for assessing outcomes of gender-affirming care.

Next Steps

•An international, multi-site field test is ongoing. Once developed, the GENDER-Q will be made available for use in clinical and academic research at no charge for not-for-profit use.

Key References

1.Coleman, E., et al. International Journal of Transgender Health 23.sup1 (2022): S1-S259.

2.Dy, Geolani W., et al. Translational Andrology and Urology 8.3 (2019): 228.

3.Andréasson, My, et al. Plastic and Reconstructive Surgery 141.4 (2018): 1026-1039

4. Barone, M., et al. Aesthetic plastic surgery 41 (2017): 700-713.

5. Oles, Norah, et al. Annals of surgery 275.1 (2022): e52-e74.

6. Klassen, Anne F., et al. BMJ open 8.10 (2018): e025435.