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A Content and Readability Analysis of Genitourinary and Sexual Health-Related Patient-Reported Outcome Measures in
Sophia Hu1, Meg Quint2, William R Boysen3
1Department of Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, MA.
Objective:
To the evaluate the readability and comprehensiveness of genitourinary and sexual health-related patient-reported outcomes (PROMs) used in gender-affirming care.
Methods:
Common PROMs that measure genitourinary and sexual health-related outcomes in gender-affirming care literature were identified from six recent systematic reviews. Readability analysis was completed at the level of individual items and full scale using established readability assessment tool, including Flesch Kincaid Grade Level (FKGL), Gunning Fog Score (GF), Coleman Liau Index (CLI), and Simple Measure of Gobbledygook (SMOG) Index. The concepts measured by the PROMs were evaluated for comprehensiveness.
Results:
Twenty-five PROMs were included, of which 12 assessed genitourinary outcomes and 13 assessed sexual health outcomes. A total of seven genitourinary domains and eight sexual health domains were identified during concept mapping. Readability analysis showed a median PROM grade level of 9.0 and 9.5 in genitourinary and sexual PROMs, respectively. The Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction v2.0 had the lowest median reading grade level of 5.7, and the Female Sexual Function Index has the highest median reading grade level of 13.9. No single PROM was found to be comprehensive. Multiple PROMs contained double-barreled items or used outdated terminology.
Conclusion:
Most PROMs used in the genital gender-affirming literature failed to meet the readability recommendations for patient-facing material and were culturally unfit for use in transgender and gender-diverse individuals. None of the PROMs were found to be comprehensive for evaluating outcomes of gender-affirming care. Validated gender-affirming care-specific PROMs that are comprehensible, comprehensive, and relevant are urgently needed.
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