Inclusive Language in Patient-Reported Outcome Measures for Acne Needed to Improve LGBTQ+ Patient Care and Data Accuracy

LGBTQ+ inclusive language in patient-reported outcome measures (PROMs) may improve the quality of clinical data and foster better patient-clinician relationships, particularly for transmasculine individuals with acne undergoing gender-affirming testosterone therapy, who are at high risk for acne, depression, and suicidal ideation. This study aimed to assess LGBTQ+-inclusive language in acne-related PROMs, a critical step in ensuring accurate data collection and equitable care.

This qualitative study utilized an inductive thematic analysis of 22 PROMs on acne, dermatology, and general health, identified through PubMed. LGBTQ+ inclusive language was defined using the NIH style guide. Relevant items in PROMs were categorized based on themes of nonassumption of heteronormativity, gender-neutral language, and inclusion of a spectrum of LGBTQ+ identities. Three investigators with LGBTQ+ health expertise developed a consensus codebook.

Of the 16 PROMs analyzed, four acne-specific PROMs (Acne Disability Index, Acne Quality of Life Scale, Acne-QoL, and Cardiff Acne Disability Index) contained LGBTQ+-noninclusive language, such as gendered terms like “brothers and sisters” instead of “siblings” and heteronormative phrasing regarding relationships. PROMs in dermatology and general health were largely more inclusive, often using terms like “partner.” Notably, some PROMs had noninclusive language due to legacy licensing agreements, limiting modification without revalidation.

The study highlighted barriers in updating PROMs to reflect LGBTQ+ inclusive language due to potential impacts on validity and comprehension. It also emphasized the importance of including diverse populations in PROM development to ensure broader applicability. Limitations included restricting the analysis to English-language PROMs, potentially missing insights from non-English instruments.

“Inclusion of diverse populations in development and validation may provide greater understanding of potential language association,” the authors concluded, underscoring the need for systemic changes to ensure health equity for LGBTQ+ individuals.

Reference
Sia T, Abou-Taleb F, Yeung H, Chang ALS. LGBTQ+-Inclusive Language in Patient-Reported Outcome Measures for Acne Vulgaris. JAMA Dermatol. 2025;161(1):108-110. doi:10.1001/jamadermatol.2024.5077.