Department of Surgery, Brigham and Women's Hospital, Harvard Medical School, Boston, MA.
Division of Endocrinology, Brigham and Women's Hospital, Harvard Medical School, Boston, MA; Stanford University School of Medicine, Stanford, CA.
Urology. 2024 Oct;192:148-157. doi: 10.1016/j.urology.2024.06.044. Epub 2024 Jun 25.
To the evaluate the readability and comprehensiveness of genitourinary and sexual health-related patient-reported outcomes (PROMs) used in gender-affirming care.
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.
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 Multiple PROMs contained double-barreled items or used outdated terminology.
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.
评估用于性别肯定护理的与泌尿生殖和性健康相关的患者报告结局（PROM）的可读性和全面性。
从六项近期系统评价中确定了用于评估性别肯定护理文献中泌尿生殖和性健康相关结局的常见 PROM。使用既定的可读性评估工具，对个体项目和整个量表进行了可读性分析，包括 Flesch-Kincaid 年级水平（FKGL）、Gunning Fog 分数（GF）、Coleman-Liau 指数（CLI）和简易斯克里文测试（SMOG）指数。评估了 PROM 所测量的概念的全面性。
共纳入 25 项 PROM，其中 12 项评估泌尿生殖结局，13 项评估性健康结局。在概念映射过程中确定了七个泌尿生殖领域和八个性健康领域。可读性分析显示，泌尿生殖和性 PROM 的平均 PROM 阅读水平分别为 9.0 和 9.5。患者报告的结局测量信息系统性功能和满意度 v2.0 的平均阅读水平最低，为 5.7，而女性性健康指数的平均阅读水平最高，为 13.9。没有一种 PROM 被发现是全面的。多个 PROM 包含双管齐下的项目或使用过时的术语。
大多数用于生殖器性别肯定文献的 PROM 未能达到面向患者的材料的可读性建议，并且在文化上不适合用于跨性别和性别多样化的个体。没有一种 PROM 被发现可以全面评估性别肯定护理的结果。迫切需要验证具有可理解性、全面性和相关性的特定于性别肯定护理的 PROM。
