THE RESEARCH

What are we learning?

Here’s where we tell you how your participation helps make the world better for LGBTQ+ people. Read on to find out some of what YOUR studies have found!

But first, this brief video talks about research questions and how scientists develop them. Sometimes the answer a study gets to a research question is surprising or things don’t work out the way researchers expect. These kinds of results are also considered important and we think it’s our responsibility to report them to you: https://www.youtube.com/watch?v=mrWeLJZydUU

We're committed to getting our results back to the participants and communities who made the research possible. See our Research Dissemination Plan here:

•      Research Dissemination Plan

Our research comes from analysis of various types of studies and analyses. 

To learn more about our research and the various collaborations that make it possible, see our Collaborate page. 

Below you can learn about our published work. But there is much more in development. To see a listing a complete listing of approved ancillary studies is available here

Journal of the American Medical Informatics Association – June 4, 2019

Publication #1: How The PRIDE Study Research Platform was Built

Official Title: A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study — The PRIDE Study 

What Did We Do? 
The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. In 2015, our team built a secure online website to learn about LGBTQ+ health. This website is one of the ways we interact with participants in The PRIDE Study. We also built a national network of organizations to help engage LGBTQ+ people in health research. This network is called PRIDEnet. 

We made the website interactive and fun. We recruited 13,932 people over 2 years. We recruited people of diverse ages, sexual orientations, and gender identities. We recruited people from different geographic locations in the United States. All of the people who joined The PRIDE Study interacted with the website. They completed long annual surveys. The surveys included sensitive topics. About 32% (3,813) of the people who joined were gender minority people. 

What Was New, Innovative, or Notable?
This is the first time an online website and a national network were built for health research with LGBTQ+ communities. We think that this is a cost-effective and empowering way to do research. We think that this type of research will be even better in the future, as technology improves.

What Did We Learn?
We learned that online-only, long-term studies are possible. People engaged with the website and organizations joined our network. We recruited and retained more participants than we thought we would, particularly gender minority people.

What Does This Mean for Our Communities?
We can use online websites like this one to conduct health research and answer important questions. We can get LGBTQ+ organizations more actively involved in health research. We can answer more diverse questions about subcommunities within the LGBTQ+ community. We can provide better information for health care providers and policymakers so that people in our communities get better health care.

What’s Next?

· We continue to enroll people in The PRIDE Study. 
· We engage LGBTQ+ organizations in PRIDEnet. 
· We are producing interesting and relevant research. 
· We are using the input of many LGBTQ+ people.
· We are disseminating research findings to communities.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation

Mitchell R Lunn, Micah Lubensky, Carolyn Hunt, Annesa Flentje, Matthew R Capriotti, Chollada Sooksaman, Todd Harnett, Del Currie, Chris Neal, Juno Obedin-Maliver, A digital health research platform for community engagement, recruitment, and retention of sexual and gender minority adults in a national longitudinal cohort study–—The PRIDE Study, Journal of the American Medical Informatics Association, ocz082, https://doi.org/10.1093/jamia/ocz082

Journal of the American Medical Informatics Association – June 4, 2019

PLOS ONE – May 2, 2019

Publication #2: How The PRIDE Study iPhone App Was Used

Official Title: Using mobile technology to engage sexual and gender minorities in clinical research

What Did We Do?

The PRIDE Study is an online study of LGBTQ+ physical, mental, and social health. Our team recruited 18,099 participants for a pilot phase (also known as a testing phase). The phase lasted from June 2015 to May 2017. This pilot phase used an iPhone app. 

Of those who consented to join, 16,394 people provided data. More than 98% identified as sexual minorities (people who are not heterosexual or straight). More than 15% identified as gender minorities (people who are transgender or gender non-binary). Participants completed 24,022 surveys. They provided input on 3,544 health topics. They cast 60,522 votes about those topics. 

This article provides details about the app’s features. It also provides information about participants. We wanted to know gender identity, sexual orientation, race, ethnicity, educational level, annual income, and geographic region.

What was New, Innovative, or Notable?

This is the first time a mobile app was used to engage and recruit lots of LGBTQ+ people who aren’t usually included in health research. We think that apps may be useful in other communities that have had negative experiences in health research settings such as hospitals and clinics.

What Did We Learn?

We learned that a lot of LGBTQ+ people joined an online health study. They wanted to talk about health topics. They liked accessing live data via dashboards. 

We had problems. For example, incomplete app testing resulted in a data storage error. Also, lots of people voting at once resulted in slow loading at times. Software problems kept us from easily providing new surveys to participants.

What Does This Mean for Our Communities?

We now have an easier and more accessible way to get health information from LGBTQ+ communities. That means we can ask more specific and nuanced questions, especially as peoples’ lives change. We can give this information back to organizations that serve the health of our communities so that they can do their jobs even better.

What’s Next?

We decided that there might be even better ways to enroll people in this type of study. The app model had problems. iPhones cost a lot. Some people can’t afford them. It was hard to develop an app for Android phones at the same time. 

As a result of this pilot, we developed a web-based research portal. This portal is accessible from any Internet-connected device regardless of the size of the screen. This allows for more diverse ways to access the study, not just from a mobile phone. 

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation

Lunn MR, Capriotti MR, Flentje A, Bibbins-Domingo K, Pletcher MJ, Triano AJ, et al. (2019) Using mobile technology to engage sexual and gender minorities in clinical research. PLoS ONE 14(5): e0216282. https://doi.org/10.1371/journal.pone.0216282

PLOS ONE – May 2, 2019

European Eating Disorders Review – December 2, 2019

Publication #3: Eating Disorder Attitudes and Behaviors Among Gay Men

Official Title: Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men

What Did We Do?

Many researchers who study health use a survey to ask about eating disorder attitudes and behaviors. We asked gay cisgender (people whose gender identity matches the sex they were assigned at birth) participants in The PRIDE Study to fill out this widely used survey. We analyzed the average scores of their answers.

What was New, Innovative, or Notable?

This is the first study to show the average scores of this survey for any gay men.

What Did We Learn?

People in the study engaged in dietary restraint (20%), binge eating (11%), excessive exercise (10%), laxative misuse (1%), and self‐induced vomiting (1%) at least once in the past 28 days.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to use this survey with cisgender gay men.

What’s Next?

We want to understand more about eating disorders in other sexual and gender minority communities.

Action Step:


See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Capriotti MR, Murray SB, Compte EJ, Griffiths S, Bibbins-Domingo K, Obedin-Maliver J, Flentje A, Lubensky ME, Lunn MR. Community norms for the Eating Disorder Examination Questionnaire among cisgender gay men. Eur Eat Disord Rev. 2019 Dec 2. https://doi.org/10.1002/erv.2708

European Eating Disorders Review – December 2, 2019

Journal of Gay & Lesbian Mental Health – December 17, 2019

Publication #4 What Mental Health Providers Want to Know About Helping LGBTQ+ People

Official Title: Supporting sexual and gender minority health: Research priorities from mental health professionals

What Did We Do?

An internet survey was emailed to mental health providers asking about 62 different topics. We wanted to know which ones are important in their care of LGBTQ+ people. We also asked if there were any other topics that we should include in the survey.

One hundred and sixty-three mental health providers responded:

˙30% were psychiatrists
˙18.5% were marriage and family therapists
˙18% were psychologists
˙13% were social workers
˙13% were mental health counselors
˙7% belonged to several different professions in mental health

Just over half of these providers gave us new topics that were important to their care of LGBTQ+ people.

What Was New, Innovative, or Notable?

Directly surveying providers is not common. Asking providers who care for LGBTQ+ people to help guide a study is new. So, it may take less time to bring study results to the providers who need information to improve care if they were involved in choosing the topics.

What Did We Learn?

Mental health providers said that of the 62 topics, the most important to their care of LGBTQ+ people were:

˙stress related to being LGBTQ+
˙lifestyle factors that support emotional strength and health
˙depression
˙intimate relationships
˙suicide

We learned that there are areas that we did not ask the mental health providers about, but that they would like to more research on.

˙24% wanted more research on relationships among LGBTQ+ people:
      ˙Sexual relationships with many partners
      ˙Family relationships such as LGBTQ+ children and their families
      ˙Community relationships such as how LGBTQ+ people fit into their communities
˙22% wanted more research on how LGBTQ+ and other identities (such as race, ethnicity, immigration status, or disability) affect their health and experiences.

What Does This Mean for Our Communities?

There are opportunities to improve the information that mental health providers have, so that they can better care for LGBTQ+ people. While some topics have been covered in research, they remain important to providers and should continue to be researched.

There are new topics (listed above) we can share with mental health providers that may improve care.

What’s Next?

Study results will be used to help inform the topics covered in The PRIDE Study. Some of the topics, such as depression and suicide, have been researched many times. This study shows there may be more ways to help care for LGBTQ+ people.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Clark, Kristen D., Matthew R. Capriotti, Juno Obedin-Maliver, Mitchell R. Lunn, Micah E. Lubensky, and Annesa Flentje. “Supporting Sexual and Gender Minority Health: Research Priorities from Mental Health Professionals.” Journal of Gay & Lesbian Mental Health, December 17, 2019, 1-17. https://doi.org/10.1080/19359705.2019.1700865

Journal of Gay & Lesbian Mental Health – December 17, 2019

Substance Abuse – February 7, 2020

Publication #5: Substance use among underrepresented LGBTQ+ communities

Official Title: Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study 

What Did We Do? 

Substance use can have a dramatic impact on peoples’ personal and professional lives. Over time, substance use can put people at risk of certain types of cancer and cause heart and liver problems. LGBTQ+ community members may be at higher risk of using substances due to increased discrimination and stressful experiences like coming out to unsupportive family and friends. This study looked at substance use among 1,790 LGBTQ+ adults. About 40% (691) of these folks may not have been able to take part in previous research due to having non-LGB sexual orientations such as asexual, pansexual, or queer, and/or identify as genderqueer, transmasculine, or transfeminine. We looked for difference among these groups in the use of alcohol, marijuana, and other illegal or non-prescribed drugs. 

What Was New, Innovative, or Notable?

This is the first study to look at substance use among diverse LGBTQ+ community members, such as people who identify as pansexual, asexual, queer, transmasculine, transfeminine, and genderqueer, and not just lesbian, gay or bisexual. 

What Did We Learn? 

Over half (51%) of the LGBTQ+ people in this study reported binge drinking within the last year, almost 40% reported marijuana used within the past year, and nearly 20% reported illegal or non-prescribed use of other drugs. Additionally, 30% reported feeling that alcohol, marijuana or other drug use had been an issue in their life. This study found that alcohol, marijuana, and other drug use was different among different groups of LGBTQ+ people who have not been part of research on substance use in the past, including transmasculine, transfeminine, and genderqueer people who identify as asexual and queer. 

What Does This Mean For Our Communities? 

This work shows that more research is needed to better understand the effects of substance use in our diverse LGBTQ+ communities. Not all members of this community use the same substances in the same way. So, we need to create better screening guidelines and treatment programs by including diverse people from all sexual orientations and genders to better understand substance use in LGBTQ+ communities. 

What’s Next? 

Alcohol use screening helps healthcare providers to identify and treat patients for possible alcohol use problems. However, current screening guidelines are based on gender and don’t include transgender and gender expansive people. We have already started to look at screening guidelines for possible harmful alcohol use among these groups. 

Action Step: 

Share this study with your friends and family. 

Citation:

Branden T. Barger, Juno Obedin-Maliver, Matthew R. Capriotti, Mitchell R. Lunn & Annesa Flentje (2020): Characterization of substance use among underrepresented sexual and gender minority participants in The Population Research in Identity and Disparities for Equality (PRIDE) Study, Substance Abuse, DOI: 10.1080/08897077.2019.1702610 


Substance Abuse – February 7, 2020

PLOS ONE – April 7, 2020

Publication #6: How to ask for harmful alcohol use with transgender and gender expansive people

Official Title: Screening gender minority people for harmful alcohol use

What Did We Do?

We wanted to find out how health care providers can best identify harmful alcohol use for transgender and gender expansive people (people who have genders that are not just binary – meaning not just woman or man, for example, and people who are genderqueer or gender non-binary). We wanted to help health care providers know which questions to ask to know if they need to ask more questions about alcohol use. We used data from The PRIDE Study 2018 Annual Questionnaire. We tested several ways that health care providers could ask about how people drink alcohol and which were best at identifying 1) harmful alcohol use and 2) bad things that can happen as a result of alcohol use. We looked at transgender women, transgender men, and gender expansive people separately from other groups because health care providers don’t have any information on how to treat such patients.

What Was New, Innovative, or Notable?

This is the first study to find out how to ask transgender and gender expansive people for harmful alcohol use.

What Did We Learn?

We learned that gender minority people can be asked about harmful alcohol use with a single question. Asking if they have had “5 or more” drinks containing alcohol on one occasion in the past year was as good as other methods. In addition, asking the question in this way worked well for transgender men, transgender women, and gender expansive people. Answering yes to this question doesn’t mean the person has an alcohol problem. Instead, it is a way for health care providers to know if they should ask their patients more questions about alcohol use or offer services for alcohol use.

What Does This Mean for Our Communities?

Health care providers can now confidently ask their transgender and gender expansive patients about alcohol use. Before this study, health care providers had to use guidelines that were designed for cisgender men and women.

What’s Next?

We need to get the word out about how to provide alcohol screening for transgender and gender expansive patients. It would also be good to study these questions in a healthcare setting.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Flentje, A., Barger, B.T., Capriotti, M.R., Lubensky, M. E., Tierney, M., Obedin-Maliver, J., & Lunn, M. R. (2020). Screening gender minority people for harmful alcohol use. PLOS One, DOI.org/10.1371/journal.pone.0231022
PLOS ONE – April 7, 2020

Eating Behaviors – March 27, 2020

Publication #7: Eating Attitudes and Behaviors in Transgender Men and Women

Official Title: Community Norms for the Eating Disorder Examination Questionnaire (EDE-Q) among Transgender Men and Women

What Did We Do?

We asked transgender men and women participants in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers.

What Was New, Innovative, or Notable?

This is the first study to show the average scores of this specific survey for transgender men or women.

What Did We Learn?

Study participants engaged in following behaviors at least once in past 28 days:

Dieting 

Transgender Men 25% 
Transgender Women 28%

Eating large amounts of food in a short period of time

Transgender Men 11%
Transgender Women 13%

Exercising a lot

Transgender Men 8%
Transgender Women 8%

Forcing themselves to vomit

Transgender Men 2%
Transgender Women 2%

Using laxatives (medicines for constipation to encourage bowel movements) for weight loss


Transgender Men 0.3%
Transgender Women 0.6%

Transgender men reported higher rates of eating large amounts of food in a short period of time and exercising a lot compared to the general population. Transgender women reported higher rates of dieting and exercising a lot compared to the general population.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to understand how their transgender patients’ or participants’ scores compare to the average transgender man or woman’s score for this survey.

What’s Next?

We want to understand more about body image and eating disorders in other sexual and gender minority communities.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Nagata JM, Murray SB, Compte EJ, Pak EH, Schauer R, Flentje A, Capriotti MR, Lubensky ME, Lunn MR, Obedin-Maliver J. Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among transgender men and women. Eating Behaviors.https://doi.org/10.1016/j.eatbeh.2020.101381

Eating Behaviors – March 27, 2020

PLOS ONE – May 4, 2020

Publication #8: Including transgender and gender non-binary people in online sexual and reproductive health surveys

Official Title: Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender non-binary people

What Did We Do?

Participants in most research studies about contraception, pregnancy, and abortion are cisgender and heterosexual. “Cisgender” means that the participant’s gender is the same as their birth sex. We wanted to know more about the reproductive experiences of transgender, non-binary, and gender-expansive people who were assigned female or intersex at birth. We also wanted to know more about the reproductive experiences of cisgender sexual minority women. We created an online survey to ask about people’s experiences with contraceptive use, pregnancy, and abortion.

We asked about many things in this survey. Examples of types of questions include gender identity, language used for sexual and reproductive body parts, and medical or surgical steps people have taken to affirm their gender. We also asked about sexual attraction and sexual activity, contraceptive use and preferences, and pregnancy history and desires. This study shows how questions in the survey were changed with participants’ input to create a more inclusive and positive survey experience.

What Was New, Innovative, or Notable?

We measured people’s sexual and reproductive health experiences without assuming their gender identity, sexual orientation, or the gender identity or sexual orientation of their partners. Also, we allowed participants to choose words in the survey for different sexual and reproductive body parts and experiences. We hoped that they would feel comfortable participating if their gender identity was different from their birth sex.

What Did We Learn?

We learned new things about how participant input can be used in different ways to improve research. Specifically, we learned that participant input can make the survey a more positive experience for participants, and can potentially improve the quality and accuracy of the data collected. For example, we used participant input in the initial design and in the implementation of the survey. We learned that it takes a lot of time to create a survey experience that is truly participant-centered, but we think this time is well spent if it results in a more positive research experience.

What Does This Mean for Our Communities?

Creating more inclusive and positive surveys for broader groups of sexual and gender minority people will improve their survey experience. Creating surveys with language that people normally use to describe their bodies and bodily activities helps people feel good. We hope researchers can use this survey to understand the sexual and reproductive health experiences of ALL people, regardless of gender identity. Such results can better reflect the gender and sexual diversity that exists in our communities.

What’s Next?

We hope future researchers will offer participants the opportunity to substitute words in order to develop surveys that affirm participants’ beliefs. We hope that future research can find out if using language selected by participants in a survey leads to higher response rates compared to surveys that do not include language selected by participants. We hope that this method will inspire others and will advance the field of survey research for people who have been treated as insignificant in society.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Lunn MR, Katz A, Fix L, Durden M, Stoeffler A, Hastings J, Cudlitz L, Goldberg E, Lesser-Lee B, Letcher La, Reyes A, Flentje A, et al. (2020) Development of an affirming and customizable electronic survey of sexual and reproductive health experiences for transgender and gender nonbinary people. PLoS ONE. DOI:10.1371/journal.pone.0232154

PLOS ONE – May 4, 2020

Journal of General Internal Medicine – June 18, 2020

Publication #9: Changes in depression and anxiety levels among LGBTQ+ people coinciding with onset of the COVID-19 pandemic

Official Title: Depression and anxiety changes among sexual and gender minority people coinciding with onset of COVID-19 pandemic

What Did We Do?

We wanted to understand how the COVID-19 pandemic might be impacting the mental health of LGBTQ+ community members. We compared responses to questions on anxiety and depression from The PRIDE Study 2019 Annual Questionnaire with responses to the same questions collected just after the pandemic began.

What Was New, Innovative, or Notable?

This is one of the first studies to look at mental health and changes in mental health related to the COVID-19 pandemic among LGBTQ+ people.

What Did We Learn?

We learned that people overall had more symptoms of anxiety and depression after the pandemic began (with some interesting exceptions):

• People who weren’t very anxious and depressed before COVID-19 were overall more anxious and depressed after COVID-19 began.

• People who were very anxious before COVID-19 overall felt about the same after COVID-19 began.

• People who were depressed before COVID-19 were overall slightly less depressed after COVID-19 began, though probably not in a noticeable way, as they already were experiencing a lot of depression.

What Does This Mean for Our Communities?

We need to care for ourselves and other people in our communities. We need to check in on how people are feeling and take extra steps to care for ourselves and our loved ones. People within our communities should reach out for professional help to cope with anxiety and depression. Our finding might also mean that we have much to learn about coping in stressful situations from people who are diagnosed with depression.

What’s Next?

We are going to learn more about the impact of COVID-19 on the health of our LGBTQ+ communities by doing more studies on the impact of COVID-19.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Flentje, A. Obedin-Maliver, J., Lubensky, M.E., Dastur, Z., Neilands, T., Lunn, M. R. (In press). Depression and anxiety changes among sexual and gender minority people coinciding with onset of COVID-19 pandemic. Journal of General Internal Medicine. (2020). https://doi.org/10.1007/s11606-020-05970-4

Journal of General Internal Medicine – June 18, 2020

Body Image – July 8, 2020


Publication #10: Eating Attitudes and Behaviors in Lesbian Women


Official Title: Eating disorder attitudes and disordered eating behaviors as measured by the eating disorder examination questionnaire (EDE-Q) among cisgender lesbian women

What Did We Do?

We asked 563 cisgender lesbian women participants in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers. We looked at their scores in the following categories: restraint, eating concern, weight concern, shape concern, and global score.

What Was New, Innovative, or Notable?

Historically, researchers have thought that lesbian women cared less about thin body ideals and body image issues than their heterosexual counterparts. This is the first study to explore this theory using the average scores of this widely used eating disorder survey among lesbian women.

What Did We Learn?

Lesbian women engaged in following behaviors at least once in past 28 days: dieting (14%), eating large amounts of food in a short period of time (9%), exercising a lot (5%), forcing themselves to vomit (0.4%), using medicines for constipation to encourage bowel movements for weight loss (0.4%). Scores for weight concern and shape concern were higher than for the other categories. Given that 63.4% of the sample had a body mass index (BMI) considered overweight or obese, weight and shape concerns may be normal for this group. Unlike with findings in other populations, BMI was not associated with restraint in this group.

What Does This Mean for Our Communities?

These results will help healthcare providers and researchers to use this survey with lesbian women in their practices.

What’s Next?

We want to understand more about body image and eating disorders in other sexual and gender minority communities.

Action Step:

See: http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Nagata JM, Murray SB, Flentje A, Compte EJ, Schauer R, Pak EH, Capriotti MR, Lubensky ME, Lunn MR, Obedin-Maliver J. Eating disorder attitudes and disordered eating behaviors as measured by the eating disorder examination questionnaire (EDE-Q) among cisgender lesbian women. Body Image. https://doi.org/10.1016/j.bodyim.2020.06.005
Body Image – July 8, 2020

Archives of Sexual Behavior – September 2, 2020

Publication #11: What do sexual and gender minority people want researchers to know about sexual orientation and gender identity questions?

Official Title: What sexual and gender minority people want researchers to know about sexual orientation and gender identity questions: a qualitative study

What Did We Do?

Questions about sexual orientation and gender identity are important but aren’t asked enough in research studies. Current questions don’t meet the needs of LGBTQ+ people. Researchers from The PRIDE Study held 9 focus groups in the San Francisco Bay Area and 19 one-on-one interviews all over the country to ask LGBTQ+ people: how are current sexual orientation and gender identity questions not meeting your needs and how could they be improved?

What Was New/Innovative/Novel?

This is the first time such a large group of LGBTQ+ people have been asked for their views on questions about sexual orientation and gender identity and how these questions could be improved.

What Did We Learn?

We learned that current questions often didn’t allow for fluidity in sexual orientation and gender identities, and questions often didn’t capture various identities. We also learned that questions also weren’t specific enough. For example:  

-When researchers ask about sexual orientation, are they asking about our identity, who we are sleeping with, or who we are attracted to?
- When researchers ask about gender, are they asking about gender identity, gender expression (clothing, hair, makeup, etc.), or sex assigned at birth?

The article suggests ways in which sexual orientation and gender identity questions could be improved based on feedback from focus groups and interviews.


What Does This Mean for Our Communities?

Understanding these views could improve how current sexual orientation and gender identity questions are designed, improve the experience of LGBTQ+ people in research, and make sure LGBTQ+ people are more accurately represented in research studies.

What’s Next?

We now need to find out how LGBTQ+ people actually respond to these updated questions and support their use in research studies.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Suen, L.W., Lunn, M.R., Katuzny, K. et al. What Sexual and Gender Minority People Want Researchers to Know About Sexual Orientation and Gender Identity Questions: A Qualitative Study. Arch Sex Behav (2020).

https://doi.org/10.1007/s10508-020-01810-y

Archives of Sexual Behavior – September 2, 2020

American Journal of Obstetrics and Gynecology – October 01, 2020

Publication Title #12: Transgender and nonbinary people’s experiences and preferences with abortion nationally

Official Title: Abortion experiences and preferences of transgender, nonbinary, and gender-expansive people in the United States

What Did We Do? 

We enrolled transgender, nonbinary, and gender-expansive (TGE) people 18 years and older, who were assigned female or intersex at birth in an online survey. We asked them about their abortion experiences, and feedback on how to make abortion care better for pregnant TGE people.

What Was New/Innovative/Novel? 

These are the first study results on what kinds of abortions TGE people have had, what TGE people want and need in abortion care, and how researchers and health care providers can make abortion experiences better for TGE people.

What Did We Learn? 

About one in ten TGE participants reported having ever been pregnant. More than one in five of the pregnancies they reported ended in abortion. Of the abortions that participants reported, most were surgical abortions. When all participants (regardless if they had already had an abortion) were asked what kind of abortion they would prefer, most said they would choose an abortion with pills (medication abortion) instead of a surgical abortion, because it seemed more private and comfortable. Almost one in three people did not know what kind of abortion they would choose, if faced with that decision.

What Does This Mean for Our Communities? 

These study results may help TGE people get better abortion care. The study shows that TGE people might find it difficult to get the types of abortion that they want, and that they might need more information about what their abortion options are.

What’s Next? 

We need to use these data to teach doctors, nurses, and other health care providers about how to improve abortion care and make their clinics more welcoming for TGE people. Some ideas were to use gender-neutral intake forms and create privacy options for TGE patients. Also, many participants did not know what kind of abortion they would want; TGE people need to be provided with information about abortion options.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Moseson H, Fix L, Ragosta S, Forsberg H, Hastings J, Stoeffler A, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J. Abortion experiences and preferences of transgender, nonbinary, and gender-expansive people in the United States. American Journal of Obstetrics and Gynecology (2020). DOI: https://doi.org/10.1016/j.ajog.2020.09.035
American Journal of Obstetrics and Gynecology – October 01, 2020

International Journal of Transgender Health – November 18, 2020

Publication Title #13: Pregnancy among transgender, nonbinary, and gender-expansive (TGE) people in the United States

Official Title: Pregnancy intentions and outcomes among transgender, nonbinary, and gender-expansive people assigned female or intersex at birth in the United States: results from a national, quantitative survey

What Did We Do?

We asked TGE people from all over the United States about their experiences with pregnancy and if they want to get pregnant in the future.

What Was New/Innovative/Novel?

This is the largest report on pregnancies among TGE people. These findings can help health care providers, researchers and community members understand pregnancy outcomes and pregnancy wishes among TGE people.

What Did We Learn?

TGE people plan for and have pregnancies. Of the 1,694 TGE people who answered questions on reproductive history, 210 (12%) had ever been pregnant. Most of these pregnancies ended in live birth (39%), miscarriage (33%) or abortion (21%). Fifteen pregnancies occurred after starting testosterone and four occurred while taking it. Among all participants, 11% wanted to get pregnant and 11% felt “at risk” for a pregnancy they did not want.

What Does This Mean For Our Communities?

More support in the form of contraceptive counseling and access is needed for TGE people who feel “at risk” for a pregnancy that they do not want, as well as preconception counseling and access to fertility planning for those who want to get pregnant in the future.

What’s Next?

Health care providers should not assume what TGE patients want in relation to pregnancy and family planning. Providers should counsel TGE people broadly on planning for or avoiding pregnancy, depending on what people want for their own lives. More research should be done to better understand these pregnancy experiences and how they vary by individual characteristics.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Fix L, Hastings J, Stoeffler A, Lunn MR, Flentje A, Lubensky ME, Capriotti MR, Ragosta R, Forsberg H, Obedin-Maliver J. (2020) Pregnancy intentions and outcomes among transgender, nonbinary, and gender-expansive people assigned female or intersex at birth in the United States: results from a national, quantitative survey. IJTH Special Issue: Trans Pregnancy: Fertility, reproduction and body autonomy. https://doi.org/10.1080/26895269.2020.1841058.
International Journal of Transgender Health – November 18, 2020

Journal of Eating and Weight Disorders – Studies on Anorexia, Bulimia and Obesity – December 03, 2020

Publication #14: Eating Attitudes and Behaviors in Bisexual Plus Women and Men

Official Title: Community Norms for the Eating Disorder Examination Questionnaire (EDE-Q) among Cisgender Bisexual Plus Women and Men

What Did We Do?

Bisexual plus (Bi+) people include those with bisexual, pansexual, and polysexual sexual orientations. We asked bi+ women and men in The PRIDE Study to fill out a widely used survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers for dieting, eating concerns, weight concerns, shape concerns, and general eating disorder attitudes.

What Was New, Innovative, or Novel?

This is the first study to explore eating disorder attitudes and behaviors in bi+ women and men.

What Did We Learn?

Bi+ participants engaged in following behaviors at least once in a 28-day span:

Dieting:

Bi+ women 19%
Bi+ men 24%

Eating large amounts of food in a short period of time:

Bi+ women 11%
Bi+ men 11%

Exercising a lot:

Bi+ women 5%
Bi+ men 5%

Forcing themselves to vomit:

Bi+ women 2%
Bi+ men 0%

Using laxatives (medicines for constipation to encourage bowel movements) for weight loss:

Bi+ women 0.4%
Bi+ men 1%

Bi+ men reported higher concerns about their weight than men in the general population. There were no significant differences in eating disorder attitudes or behaviors between bi+ women and men.

What Does This Mean For Our Communities?

These results can help healthcare providers understand eating disorder attitudes and behaviors in bi+ women and men.

What’s Next?

We want to understand more about attitudes and behaviors about being muscular in sexual minority communities.

Action Step:

See pridestudy.org/study for more information and to share this study with your friends and family. Citation:

Nagata, J. M., Compte, E. J., Murray, S. B., Schauer, R. M., Pak, E. H., Capriotti, M. R., Lubensky, M. E., Lunn, M. R., & Obedin-Maliver, J. (2020). Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among cisgender bisexual plus women and men. Eating and Weight Disorders. https://doi.org/10.1007/s40519-020-01070-8.
Journal of Eating and Weight Disorders – Studies on Anorexia, Bulimia and Obesity – December 03, 2020

Journal of Eating Disorders – December 8, 2020

Publication #15: Eating Attitudes and Behaviors in Gender-Expansive People

Official Title: Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among gender-expansive populations

What Did We Do?

Gender-Expansive (GE) people do not identify as being a man or a woman. GE participants in The PRIDE Study completed a survey about eating disorder attitudes and behaviors. We looked at the average scores of their answers for dieting, eating concerns, weight concerns, and shape concerns, as well as general eating disorder attitudes.

What Was New, Innovative, or Notable?

This is the first study to explore eating disorder attitudes and behaviors in GE people.

What Did We Learn?

Nearly one in four GE people ate less food to influence their weight in the past 28 days. Thirteen percent over ate food to an unhealthy level in a short time in the past 28 days. Attitudes and behaviors were nearly the same based on sex assigned at birth. GE people had the same levels of eating disorders as transgender men and ate less food and had less concerns about shape than transgender women.

What Does This Mean for Our Communities?

These results can help health care providers understand eating disorder attitudes and behaviors in GE people.

What’s Next?

We want to understand more about attitudes and behaviors about being muscular in gender minority communities.

Action Step:

See: http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation: 

Nagata, J. M., Compte, E. J., Cattle, C. J., Flentje, A., Capriotti, M. R., Lubensky, M. E., Murray, S. B., Obedin-Maliver, J., & Lunn, M. R. (2020) 8:74. Community norms for the Eating Disorder Examination Questionnaire (EDE-Q) among gender-expansive populations. Journal of Eating Disorders. https://doi.org/10.1186/s40337-020-00352-x

Journal of Gay & Lesbian Social Services

Publication #16: Discrimination, Drinking, and Depression Among Lesbian, Bisexual, and Queer Women

Official Title: Understanding Co-Occurring Depression Symptoms and Alcohol Use Symptoms among Cisgender Sexual Minority Women

What did we do?

Lesbian, bisexual, and queer women drink more alcohol and experience more depression than heterosexual women (Cochran, Greer, & Mays, 2003; McCabe et al., 2009; Pakula, Carpiano, Ratner, & Shoveller, 2016). It is important that we better understand why this happens, so mental health providers can better help. This study tries to help us better understand how people cope with discrimination and which coping strategies make their drinking and depression better and worse. For people who experience discrimination, we tested if drinking and avoiding feelings make depression and problems related to drinking worse, and talking to friends makes depression and problems related to drinking better.

What was new, innovative, or notable?

There isn’t very much research that has looked at how lesbian, bisexual, and queer women cope, and the relationships between discrimination, depression, and drinking.

What did we learn?

We found that people who had experienced discrimination who talked to friends were less depressed. We also found that drinking alcohol and trying to avoid feelings can make depression worse.

What does this mean for our communities?

It is unjust that so many members of the LGBTQ+ community experience discrimination. It is important for us to have tools to reduce the impact of discrimination on LGBTQ+ lives. Based on this study, we recommend talking to friends about experiences of discrimination, rather than drinking or trying to avoid our feelings.

What’s next?

We will try to share this research with members of the LGBTQ+ community and people who support them. Because our first study tested these ideas on a sample of cisgender women, we will now try to understand how discrimination, drinking, and depression are related for transgender women.

Action Step:
See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

McGeough, B.L., Aguilera, A., Capriotti, M.R., Obedin-Maliver, J., Lubensky, M.E., Lunn, M.R. & Flentje, A. (2021). Understanding co-occurring depression symptoms and alcohol use symptoms among cisgender sexual minority women. Journal of Gay & Lesbian Social Services. DOI: www.doi.org/10.1080/10538720.2021.1886214
 
References:

Cochran, S. D., Greer, J., & Mays, V. M. (2003). Prevalence of mental disorders, psychological distress, and mental health services use among lesbian, gay, and bisexual adults in the United States. Journal of Consulting and Clinical Psychology, 71(1), 53–61. https://doi.org/10.1037/0022-006X.71.1.53.

 
McCabe, S. E., Hughes, T. L., Bostwick, W. B., West, B. T., & Boyd, C. J. (2009). Sexual orientation, substance use behaviors and substance dependence in the United States. Addiction (Abingdon, England), 104(8), 1333–1345. https://doi.org/10.1111/j.1360-0443.2009.02596.

Pakula, B., Carpiano, R. M., Ratner, P. A., & Shoveller, J. A. (2016). Life stress as a mediator and community belonging as a moderator of mood and anxiety disorders and co-occurring disorders with heavy drinking of gay, lesbian, bisexual, and heterosexual Canadians. Social Psychiatry and Psychiatric Epidemiology, 51(8), 1181–1192.
https://doi.org/10.1007/s00127-016-1236-1.
Journal of Gay & Lesbian Social Services

BMJ Sexual & Reproductive Health - March 08, 2021

Publication Title #17: Attempts by transgender, nonbinary and gender-expansive people to end pregnancies without a healthcare provider

Official Title: Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States

What Did We Do?

We asked 1,694 transgender, nonbinary, and gender-expansive (TGE) people from across the United States about their sexual and reproductive health history, including if they had tried to end a pregnancy on their own, without information or support from a healthcare provider. Transgender describes someone who identifies as a gender different from that most commonly associated with their sex assigned at birth. Nonbinary is a term for someone who does not identify as only a man or a woman, but may identify as both or neither. Gender-expansive is an umbrella term for someone who may identify with and express their gender in many ways outside of what is expected of them.

What Was New, Innovative, or Novel?

These results are based on a large number of TGE people’s experiences and can help make abortion safer and more easily available.

What Did We Learn?

Of 1,694 TGE participants, 210 had ever been pregnant. More than 1 in every 3 TGE people who were ever pregnant said they had considered trying to end a pregnancy on their own. Nearly 1 in 5 of those ever pregnant tried to end a pregnancy on their own. Fifteen participants reported using herbs (38%), 10 reported physical trauma (25%), eight used vitamin C (20%), and seven used other substances (18%). Some reasons for trying to end a pregnancy on their own included cost, legal barriers, and discrimination. Participants also wanted more privacy.

What Does This Mean For Our Communities?

About 1 in every 5 TGE people (19%) who had been pregnant tried to end a pregnancy on their own, without support from a health care provider. Reasons people gave included not being able to access care through a health care provider and/or because they wanted more privacy and control over the abortion than a clinic could provide. Many of the methods people used were either ineffective (not likely to work), or unsafe, or both. People need access to information on how to safely end a pregnancy without support from a health care provider. This information can be found through websites including www.AbortionOnOurOwnTerms.org, Plan C, Aid Access, and mobile apps such as Euki.

What’s Next?

More work is needed to ensure cost, legal restrictions, information barriers, and discrimination do not keep TGE people from having safe and effective abortions, with or without a health care provider. Health care providers and advocates should provide TGE people with information to safely and effectively manage their abortions with or without clinical support. Making these changes, may allow TGE people to access safe and effective abortion options that are welcoming and respectful of their identities.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:

Moseson H, Fix L, Gerdts C, Ragosta S, Hastings J, Stoeffler A, Goldberg EA, Lunn MR, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J. (2021) Abortion attempts without clinical supervision among transgender, nonbinary and gender-expansive people in the United States. BMJ Sexual & Reproductive Health. 
https://doi.org/10.1136/bmjsrh-2020-200966.

BMJ Sexual & Reproductive Health - March 08, 2021

Body Image - An International Journal of Research - May 4, 2021

Publication Title #18: Measuring gay men and lesbian women’s desire to have a muscular body and its effects

Official/Journal Title: Psychometric Evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among Cisgender Gay Men and Cisgender Lesbian Women

What Did We Do?

Muscle dysmorphia means that someone is worried about not being muscular enough. We asked gay men and lesbian women in The PRIDE Study to fill out a widely used survey about this issue in order to see if the survey is valid in gay men and lesbian women.

What Was New, Innovative, or Notable?

This was the first study to use these survey questions with gay men and lesbian women.

What Did We Learn?

We found that this issue about muscularity has three parts for gay men and lesbian women: 1) a desire to be bigger and more muscular, 2) a dissatisfaction with the way their body looks, and 3) problems with normal life functions.

What Does This Mean For Our Communities?

This survey is appropriate for use in gay men and lesbian women. This survey helps us understand gay men and lesbian women better. These results can help providers and researchers understand the muscle-related problems that gay men and lesbian women are having and ask better questions to care for them better.
 
What’s Next?

We want to study this issue in bisexual men and women.

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends, family, and providers.

Citation: 

Compte EJ, Cattle CJ, Lavender JM, Murray SB, Brown TA, Capriotti MR, Flentje A, Lubensky M, Obedin-Maliver J, Lunn MR, Nagata JM. 2021. Psychometric evaluation of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender gay men and cisgender lesbian women. Body Image. https://doi.org/10.1016/j.bodyim.2021.04.008
Body Image - An International Journal of Research - May 4, 2021

BMC - Part of Springer Nature - June 08, 2021

Publication Title #19:
Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender sexual minority men and women

Community-Friendly Summary Title:

Muscularity concerns in gay, lesbian, and bisexual plus people

What did we do?
Muscle dysmorphia means that someone is worried about not being muscular enough. We asked gay, lesbian, and bisexual plus people (those who identify as bisexual, pansexual, and/or polysexual) in The PRIDE Study to fill out a widely used survey about this issue.

What was new, innovative, or notable?
This is the first study to show the average scores of this survey in gay, lesbian, and bisexual plus people.

What did we learn?
This study helps us understand the experience of perceiving oneself as ‘not muscular enough’ among gay, lesbian, and bisexual plus people. There were no significant differences among gay and bisexual plus men, or between lesbian and bisexual plus women.

What does this mean for our communities?
These results can help providers and researchers understand the muscle-related problems that gay, lesbian, and bisexual plus people experience to care for them better.

What’s next?
We want to study this issue in transgender men and women and people whose gender identity is non-binary (does not identify as either "man" or "woman").

Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:
Nagata JM, Compte EJ, Cattle CJ, Lavender JM, Brown TA, Murray SB, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J, Lunn MR. 2021. Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among cisgender sexual minority men and women. BMC Psychiatry. https://doi.org/10.1186/s12888-021-03302-2
BMC - Part of Springer Nature - June 08, 2021

Annals of Behavioral Medicine - July 06, 2021

Publication Title #20: Minority Stress, Structural Stigma, and Physical Health among Sexual and Gender Minority Individuals: Examining the Relative Strength of the Relationships
 
Community-Friendly Summary Title: Understanding which types of stigma and discrimination are most strongly related to worse overall physical health among LGBTQ+ people
 
What did we do?

This study looked at which types of stigma and discrimination (the unfair treatment of people) are most strongly related to worse overall physical health among LGBTQ+ people. The different types of stigma and discrimination that we looked at were: experiences of discrimination (for example, being mistreated in a job because of being LGBTQ+), experiences of LGBTQ+-related violence, living or having grown up in a community where LGBTQ+ people weren’t safe, living or growing up in a community where LGBTQ+ people weren’t accepted, outness about one’s LGBTQ+ identities, stigmatizing beliefs about LGBTQ+ people, and laws and policies that protect or hurt LGBTQ+ people within the state in which they live. We looked at this separately among subgroups of LGBTQ+ people and among LGBTQ+ people of different races and ethnicities.
 
What was new, innovative, or notable?

This is the first time (that we know of) that transgender and gender-expansive or non-binary people (people who do not identify with the traditional gender roles of “male” and “female”) were included in a study like this. This study also compared the different types of discrimination and stigma to each other, to identify which stress experiences for LGBTQ+ people are the most important to think about when we try to improve the health of our communities.
 
What did we learn?

As we expected, experiencing more stigma and discrimination was related to worse physical health among LGBTQ+ people. Safe communities had the strongest relationships with better physical health among most of the groups we studied.
 
Living in a community that is safe for LGBTQ+ people had the strongest relationship with better physical health among cisgender sexual minority women, transmasculine people, American Indian or Alaskan Native LGBTQ+ people, Asian LGBTQ+ people, and White LGBTQ+ people.
 
Having grown up in a community that was safe for LGBTQ+ people had the strongest relationship with physical health for gender-expansive or non-binary people and Black, African American, or African LGBTQ+ people.
 
Having experienced LGBTQ+-related violence was most strongly related to worse physical health among transfeminine people.
 
Living in a place where LGBTQ+ people were accepted had the strongest relationship with better physical health among Hispanic, Latino, or Spanish LGBTQ+ people.
 
Experiences of discrimination had the strongest relationship with poorer physical health among cisgender sexual minority men.
 
What does this mean for our communities? This study helps us understand which stress experiences for LGBTQ+ people are the most important to think about when we try to improve the health of our communities. Among most LGBTQ+ people, safety was most strongly related to physical health, suggesting that increasing safety in our communities should be a high priority. While we knew that safety was important before, now we have research to show that community safety is most strongly related to physical health among most groups of LGBTQ+ people.
 
What’s next?

We are going to try to figure out some of the ways that our biology is different based on our experiences of stigma and discrimination. We are doing this through a new study, which will look at how stigma and discrimination experiences are related to behavior, the way people feel, and their biology. We will look at how these stress experiences over time are related to substance use and mental health (like anxiety and depression) and to changes in the way DNA works (DNA methylation).
 
Action Step:

See http://www.pridestudy.org/study for more information and to share this study with your friends and family.


Citation:

Flentje, A., Clark, K.D., Cicero, E., Capriotti, M. R., Lubensky, M.E., Sauceda, J., Neilands, T. B., Lunn, M. R., Obedin-Maliver, J. (In press). Minority stress, structural stigma, and physical health among sexual and gender minority individuals: Examining the relative strength of the relationships. Annals of Behavioral Medicine. https://doi.org/10.1093/abm/kaab051
Annals of Behavioral Medicine - July 06, 2021

Journal of Eating Disorders - July 14, 2021

Publication Title #21: Community Norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among Gender Minority Populations

Community-Friendly Summary Title:
Muscularity concerns in transgender men, transgender women, and gender-expansive people

What Did We Do?
Muscle dysmorphia means that someone is concerned about not being muscular enough. We asked transgender men, transgender women, and gender-expansive people (people who have genders that are not just binary – meaning not just woman or man, for example, and people who are genderqueer or gender non-binary) in The PRIDE Study to fill out a widely used survey about this issue.

What Was New, Innovative, or Notable?
This is the first study to show the average scores of this survey in transgender men, transgender women, and gender-expansive people.

What Did We Learn?
This study helps us understand the experience of people seeing themselves as ‘not muscular enough’. Transgender men had the highest muscle dysmorphia symptoms, followed by gender-expansive people, then transgender women.

What Does This Mean for Our Communities?
These findings can help providers and researchers understand the muscle-related problems that transgender and gender-expansive people experience to care for them better.

What’s Next?
We will study if transgender and gender-expansive people use muscle-building supplements and drugs, such as steroids or creatine.

Action Step:
See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:
Nagata JM, Compte EJ, McGuire FH, Lavender JM, Brown TA, Murray SB, Flentje A, Capriotti MR, Lubensky ME, Obedin-Maliver J, Lunn MR. Community norms of the Muscle Dysmorphic Disorder Inventory (MDDI) among gender minority populations. Journal of Eating Disorders 9, 87 (2021). https://doi.org/10.1186/s40337-021-00442-4

Journal of Eating Disorders - July 14, 2021

Journal of the American Medical Informatics Association - August 13, 2021

Publication #22:
Online health information seeking, health literacy, and human papillomavirus vaccination among transgender and gender diverse people

Community-Friendly Summary Title:
The connection between using the Internet to search for health information and getting a shot to prevent human papillomavirus (HPV) infection among transgender and gender diverse (TGD) people

What Did We Do?
This study compared transgender and gender diverse (TGD) people with cisgender people. TGD people’s gender may not match their sex assigned at birth; cisgender people’s gender generally matches their sex assigned at birth.

We wanted to study two things: We wanted to know whether TGD people are more or less likely than cisgender people to get a shot to prevent HPV – a sexually transmitted infection that can cause warts and cancer. We also wanted to know if there is a connection between using the Internet and getting the HPV shot.

We asked The PRIDE Study participants the following questions:
  • Do you use the Internet to search for health information?
  • Do you use the Internet to search for information about shots?
  • Do you use social media like Facebook, Instagram, or others?
What Was New, Innovative, or Notable?
This was the first time a large number of TGD people were asked whether they had ever received the HPV shot. This was also the first time we asked TGD people how easy it is for them to search the Internet for health information.

What Did We Learn?
Overall, TGD people said they got the HPV shot more often than cisgender people. Surprisingly, TGD people got the HPV shot less than cisgender people when they had searched the Internet for information about shots. But TGD people got the HPV shot more often than cisgender people when they used social media like Facebook or Instagram.

In addition, there was no connection between a person’s race/ethnicity or education and getting the HPV shot. TGD people who were 27 and younger were less likely to get the HPV shot than cisgender people in the same age group. What Does This Mean for Our Communities?
These results may help health care providers and researchers understand how TGD people may use the Internet or social media to get health information. This knowledge could help us develop new ways to encourage TGD people to get a shot to prevent getting HPV and prevent them from getting warts and cancer.

What’s Next?
A future study will find out how TGD people use the Internet to search for health information and whether it’s different from how cisgender people use the Internet to search for health information. We also want to know how TGD people use social media like Facebook and Instagram to get health information.

Action Step:
See See http://www.pridestudy.org/study for more information and to share this study with your friends and family.

Citation:
Pho, A.T., Bakken, S., Lunn, M.R., Lubensky, M.E., Flentje, A., Dastur, Z., Obedin-Maliver, J. (In press). 2021. Online health information seeking, health literacy, and human papillomavirus vaccination among transgender and gender diverse people. Journal of the American Medical Informatics Association. https://doi.org/10.1093/jamia/ocab150
Journal of the American Medical Informatics Association - August 13, 2021

Health Equity - October 05, 2021

Publication #23:
From ‘shark-week’ to ‘mangina’: An analysis of words used by people of marginalized sexual orientations and/or gender identities to replace common sexual and reproductive health terms

Community Title:
Sexual and reproductive health words and phrases used by sexual and gender minority people

What Did We Do?
We asked cisgender sexual minority women (CSMW) and transgender, non-binary, and gender-expansive (TGE) people from all over the United States about the words they use to describe sexual and reproductive health processes and their body parts. Cisgender sexual minority women describes women who were assigned female sex at birth and who identify as asexual, bisexual, lesbian, pansexual, queer, and/or another sexual orientation outside of exclusively straight/heterosexual. Transgender describes someone who identifies as a gender different from that most commonly associated with their sex assigned at birth. Nonbinary describes someone who does not identify as only a man or a woman, but may identify as both or neither, or a multiplicity of genders. Gender-expansive is an umbrella term for someone who may identify with and express their gender in many ways outside of what is expected of them. Survey respondents were provided with definitions for 9 common sexual and reproductive health terms for body processes, activities, and body parts. The terms we asked about were: abortion, birth control, breasts, penis, period, pregnant, sperm, uterus, and vagina. They were asked if they use the term. If they did not use the term, they were asked to provide their own word.

What Was New, Innovative, or Notable?
This was the first study, to our knowledge, to directly measure whether sexual and gender minority people use medical terms to talk about their sexual and reproductive health, and if not, what words they use. The researchers designed the study in an innovative way, where the words/phrases that respondents provided actually replaced the medical sexual and reproductive health terms throughout the survey. This allowed participants to customize their survey while allowing us to learn more about their sexual and reproductive health with familiar language.

What Did We Learn?
CSMW and TGE respondents use a diversity of words to describe their bodies and experiences. Among 1,704 TGE and 1,370 CSMW respondents, 613 (36%) TGE respondents and 92 (7%) CSMW respondents replaced at least one medical term with their own terms. Some of the most commonly used words among TGE respondents were: “chest” for breasts (n=369, 72% of replacement words), “front-hole” for vagina (n=96, 33% of replacement words), and “dick” for penis (n=47, 45% of replacement words). Many (23%) replacement words/phrases were only used by a single respondent. For example, one person provided the word “Harold” for uterus and another provided “freedom!! (in Scottish accent)” for abortion. TGE respondents also said that word-use depended on the context, that some terms did not apply to them, or that they did not have a replacement word/phrase. For example, one respondent for the word vagina responded, “depends on the context- if it’s during sexytimes I usually avoid using the word. If I’m talking about my period I’m okay saying vagina.” Another respondent for the word uterus responded, “I’ve never had a reason to think of what to call it honestly. The only time I ever bring up that area is when talking about a hysterectomy."

What Does This Mean for Our Communities?
Sexual and reproductive health terms used in clinical and research settings can cause discomfort and dysphoria (a feeling of anxiety and dissatisfaction) among some sexual and gender minority (SGM) people. Attention to word-use by providers and researchers could increase the quality of clinical and research experiences for SGM people. Providers and researchers should ask people what words they would like to use to refer to their bodies and experiences.

What’s Next?
To build upon this work, our team is studying alternatives to asking about sex assigned at birth and gender for screening purposes in clinical care. Specifically, we developed an anatomical organ inventory with transgender, non-binary, and gender-expansive community advisory board members. We are now testing this organ inventory to see if it may be a more accurate and affirming way to assess patient eligibility for certain healthcare services. This organ inventory would be provided alongside a patient-provided language form (like the one used in this study) to make health care experiences more relevant and patient-centered.

Action Step:
Visit http://www.pridestudy.org/study for more information and to share this study with your friends and family. Also visit http://www.inclusivesrh.com to learn more about Ibis’s work and browse our community-provided resources on sexual and reproductive health relevant to transgender, nonbinary, gender-expansive, and intersex people.

Citation:
Ragosta S, Obedin-Maliver J, Fix L, Stoeffler A, Hastings J, Capriotti MR, Flentje A, Lubensky ME, Lunn MR, Moseson H (2021) From ‘shark-week’ to ‘mangina’: an analysis of words used by people of marginalized sexual orientations and/or gender identities to replace common sexual and reproductive health terms, Health Equity 5:1, 1–11, DOI: doi.org/10.1089/heq.2021.0022
Health Equity - October 05, 2021

Eating Behaviors - January 14, 2022

Publication #24: 
Appearance and performance-enhancing drugs and supplements (APEDS): Lifetime use and associations with eating disorder and muscle dysmorphia symptoms among cisgender sexual minority people 

Community Title: 
Use of muscle-building supplements by lesbian, gay, and bisexual people 

What Did We Do? 
We studied use of muscle-building supplements among gay, lesbian, and bisexual plus people (those who identify as bisexual, pansexual, and/or polysexual) in The PRIDE Study. We asked about supplements like protein, creatine, and steroids which can be used to build muscle. 

What Was New, Innovative, or Notable? 
This is one of the first studies to examine how the use of muscle-building supplements is related to eating disorders and muscle dysmorphia (when someone is worried about not being muscular enough) in gay, lesbian, and bisexual plus people. 

What Did We Learn? 
Muscle-building supplement use was common among gay men (44%), bisexual plus men (42%), lesbian women (29%), and bisexual plus women (30%). Muscle-building supplement use was linked to eating disorder and muscle dysmorphia symptoms in all groups. 

What Does This Mean for Our Communities? 
Muscle-building supplement use is common in gay, lesbian, and bisexual plus people. Discussions about muscle-building supplement use could further explain potential reasons for using these supplements in these communities. Future research could investigate potential health impacts of muscle-building supplements among gay, lesbian, and bisexual plus people. 

What’s Next? 
We will study the use of muscle-building supplements in transgender people. 

Action Step: 
See http://www.pridestudy.org/research for more information and to share this study with your friends and family. 

Citation: 
Nagata JM, McGuire FH, Lavender JM, Brown TA, Murray SB, Compte EJ, Cattle CJ, Flentje A, Lubensky ME, Obedin-Maliver J, Lunn MR. Appearance and performance-enhancing drugs and supplements (APEDS): Lifetime use and associations with eating disorder and muscle dysmorphia symptoms among cisgender sexual minority people. Eating Behaviors, 2022, 101595, ISSN 1471-0153, https://doi.org/10.1016/j.eatbeh.2022.101595
Eating Behaviors - January 14, 2022

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