A RECENT study published in highlights the lack of LGBTQ+-inclusive language in patient-reported outcome measures (PROMs) used to assess acne-related quality of life. The findings raise concerns about the inclusivity of tools used in both clinical care and research, particularly for LGBTQ+ individuals who may face unique challenges and barriers in dermatological care.
PROMs are critical for capturing patient experiences, yet this study, led by Twan Sia and colleagues from Stanford University, found that several acne-specific PROMs rely on outdated, heteronormative, or gendered language. Out of the 16 PROMs analysed, four acne-specific tools, including the Acne Disability Index (ADI) and Acne-QoL, contained non-inclusive phrasing. Examples included references to “members of the opposite sex” instead of gender-neutral terms like “partner,” and the use of “brothers and sisters” rather than “siblings.”
While dermatology-specific and health-related PROMs fared better, the study highlights that some acne-specific tools perpetuate heteronormative assumptions, potentially alienating LGBTQ+ patients. These tools are especially important for groups like transmasculine individuals undergoing testosterone therapy, who face a high incidence of acne and may require tailored care.
The researchers emphasised that updating PROM language could improve data accuracy, foster trust in patient-clinician relationships, and enhance clinical trial outcomes. However, modifying legacy PROMs is complex due to licensing agreements and the need for revalidation. Instead, the study recommends using tools that already incorporate inclusive language while advocating for the development of future PROMs with input from diverse populations.
“Addressing these language gaps in PROMs is not just about inclusivity; it’s about ensuring equitable and effective care for all patients,” said study co-author Howa Yeung, MD.
The study calls for the dermatology field to prioritise inclusive language in research and clinical practice, acknowledging the evolving needs of diverse patient populations.
Aleksandra Zurowska, EMJ
Reference
Sia T et al. LGBTQ+-Inclusive Language in Patient-Reported Outcome Measures for Acne Vulgaris. JAMA Dermatol. 2024; DOI:10.1001/jamadermatol.2024.5077.
