Sexual and gender minority inclusivity in hidradenitis suppurativa patient-reported outcomes

July 1, 2025

This plain-language research summary was generated by AI, courtesy of HS Simplified.

AI Generated Content Verified By: Leandra Barnes, M.D. | Stanford Medicine

Sexual and gender minority inclusivity in hidradenitis suppurativa patient-reported outcomes

In 2025, researchers highlighted the need for patient-reported outcome measures (PROMs) to better address the needs of sexual and gender minority (SGM) individuals with hidradenitis suppurativa (HS), a chronic skin condition often affecting sensitive areas. PROMs, tools used to assess patients' perspectives on their health-related quality of life, were analyzed for inclusivity, with findings suggesting improvements could enhance both research and clinical care for SGM communities.

Making Skin Health Questions More Inclusive for Everyone

Hidradenitis suppurativa (HS) is a skin disease where people get painful bumps and sores, often in sensitive areas like the armpits, chest, or groin. These sores can lead to a lot of pain and embarrassment, especially for people who are part of sexual and gender minorities (SGM). SGM means anyone who is not straight or whose gender is not just male or female, like people who are gay, lesbian, bisexual, transgender, or non-binary. People from these groups can feel even more stress, sadness, or worry because their skin problems may affect their sense of identity.

To understand how HS affects people’s lives, doctors use special surveys called patient-reported outcome measures (PROMs). PROMs are questionnaires that ask patients about their symptoms, feelings, and how their condition impacts their daily life. If these questions don’t use words that include everyone—for example, asking only about “men” or “women”—they might miss important information about SGM people.

What Did the Researchers Do?

Dr. Jia, Dr. Sun, Dr. Naik, and Dr. Barnes wanted to see if HS surveys include everyone, especially SGM people. They looked at 31 different PROMs: some focused just on skin problems, some on HS, and some on mental health or other general health topics. They checked if these surveys:

• Avoided assuming everyone is straight (called “heteronormativity”)

• Used gender-neutral language (not just “male” or “female”)

• Included other topics important for SGM people

What Did They Find?

Most HS and skin surveys tried to use inclusive language. For example, instead of talking only about men or women, they might say “those I love” or “sexual activity,” which can apply to anyone. Still, a few surveys had questions that assumed people are only male or female or only attracted to the opposite sex. For example, some asked, “Are you male or female?” or asked about “interactions with people of my own sex.” Some surveys also talked about “feeling like a man or woman,” which doesn’t include everyone’s experience.

The researchers suggested easy ways to improve the surveys. For example, instead of asking if someone is “male or female,” they could ask, “What is your gender identity?” and “What sex were you assigned at birth?” Instead of asking about “feeling like a man or woman,” they could ask about “feeling good about your gender identity.” These changes would help more people feel included and allow doctors to better understand everyone’s experiences.

Why Does This Matter?

Making surveys inclusive helps doctors get better information and provide better care. If SGM people feel comfortable answering questions, doctors can help them more with their skin and mental health. It’s also important for research, so scientists can see how treatments work for all kinds of people, not just some.

Limitations and Challenges

One limitation of this study is that the researchers only looked at surveys written in English. Also, changing surveys takes time and effort to make sure they still work well. The experimenters said that SGM patients and experts should be part of making any changes, so the surveys really fit everyone’s needs. If every clinic starts using their own new surveys, it might get confusing to compare results, so experts need to work together.

In the end, making sure that health questions include everyone—no matter their gender or who they love—can help people with HS (and other skin conditions) feel more supported and understood at the doctor’s office.

Author(s)

Justin L Jia, Kennedy H Sun, Haley B Naik, Leandra A Barnes

Read Original Paper

https://academic.oup.com/bjd/article/193/6/1238/8180598