Sexual Orientation and Gender Identity Measures for Cancer Research: Feedback from Older Americans

Abstract

Purpose: To improve upon measures of sexual orientation and gender identity (SOGI) used in previous studies, we created and tested seven measures for inclusion in cancer research and refined them based on input from study participants. Methods: Between February and March 2024, cognitive interviews were conducted virtually with a purposive sample of 18 adults ≥50 years old. Equal numbers of participants identified as LGBTQ+ (n = 9) and cisgender heterosexual (n = 9). We chose older adults because-for the most part-participants in past studies on SOGI data acceptability have been younger than those typically recruited in cancer-related studies. Participants were selected for maximum diversity in age, race/ethnicity, U.S. geographic region, and political ideology. Descriptive themes and patterns for each measure were organized, evaluated, synthesized, and summarized. Results: Most participants found six of seven tested measures easy to answer. Respondents were satisfied with being able to choose more than one response option for each item. Some terms, (e.g., response options "cisgender" and "non-binary" for gender identity measure) were new to some respondents. Revisions to measures were made based on respondent feedback. The breast/chest tissue item confused most respondents, so it was withdrawn. Conclusions: This study found that most tested SOGI measures were easy to understand, and the response options were appropriate. Refined measures can serve as a resource for investigators and clinicians to employ who wish to improve SOGI data collection.

Keywords: LGBTQ+; SOGI; gender identity; measures; sexual orientation.