A Systematic Review of Inflammatory Bowel Disease Epidemiology and Health Outcomes in Sexual and Gender Minority Individuals

Abstract

The health of sexual and gender minority (SGM) individuals, an inclusive term for people whose sexual orientation or gender identity is not cisgender and heterosexual, is an area of increasing awareness in research. SGM populations face health care inequities that lead to worse outcomes in physical and mental health.1Gonzales G. Przedworski J. Henning-Smith C. Comparison of health and health risk factors between lesbian, gay, and bisexual adults and heterosexual adults in the United States: results from the National Health Interview Survey.JAMA Intern Med. 2016; 176: 1344-1351Crossref PubMed Google Scholar As of 2022, 7.1% of the adult population in the United States identified as SGM. Twenty percent of Generation Z (born 1997–2012) adults identify as SGM. However, health care providers often have little knowledge of the health care needs of SGM patients.2Dorsen C. An integrative review of nurse attitudes towards lesbian, gay, bisexual, and transgender patients.Can J Nurs Res. 2012; 44: 18-43PubMed Google Scholar In 2011, the National Academies of Sciences, Engineering, and Medicine identified SGM health as an area of research need and priority.3Institute of Medicine (US) Committee on Lesbian, Gay, Bisexual, and Transgender Health Issues and Research Gaps and OpportunitiesThe Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding. National Academies Press, 2011Google Scholar This was followed by a National Academies of Sciences, Engineering, and Medicine report in 20224National Academies of SciencesEngineering, and Medicine; Division of Behavioral and Social Sciences and Education; Committee on National Statistics; Committee on Measuring Sex, Gender Identity, and Sexual Orientation.in: Bates N. Chin M. Becker T. Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press, 2022Google Scholar recommending standardized language for collecting sexual orientation and gender identity data in research and clinical settings. Data on SGM people and gastroenterologic conditions, including inflammatory bowel disease (IBD), are limited. Recent reviews on the care of transgender adolescents and young adults with IBD and on receptive anal intercourse in patients with perianal disease or ileoanal pouches have highlighted the lack of data and credible recommendations.5Schenker R.B. Wilson E. Russell M. et al.Recommendations for transgender and gender nonconforming adolescents and young adults with inflammatory bowel disease.J Pediatr Gastroenterol Nutr. 2021; 72: 752-755Crossref PubMed Scopus (0) Google Scholar,6Martin T. Smukalla S.M. Kane S. et al.Receptive anal intercourse in patients with inflammatory bowel disease: a clinical review.Inflamm Bowel Dis. 2017; 23: 1285-1292Crossref PubMed Scopus (5) Google Scholar These represent a few of the many areas in which more data on the health of SGM people with IBD are needed and point to a critical gap in our knowledge that prevents data-driven and targeted measures to provide high-quality IBD care for SGM people. In this systematic review, we assessed the available research on the epidemiology and patient-reported health outcomes related to IBD in SGM individuals as a foundation for future researchers and clinicians. We conducted a search of PubMed, Embase, Scopus, Web of Science, PsycInfo, ClinicalTrials.gov, and the Cochrane Central Register of Controlled Trials in March 2022 using keywords in the title or abstract and index terms. For the complete PubMed strategy, see the Supplementary Material. Duplicates were identified using EndNote and manual review. Studies were eligible if they were published in English and included epidemiology or outcomes of IBD diagnosis or treatment in SGM individuals. SGM includes lesbian, gay, bisexual, transgender, Two-Spirit, queer, same-sex partnering, and intersex people (full list in the Supplement Material). Case-studies, reviews, commentaries, and protocols without results were excluded. Study characteristics and data are reported in Table 1. Study quality was assessed using the Newcastle-Ottawa Scale.14Wells G.A. Shea B. O'Connell D. et al.The Newcastle-Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses. The Ottawa Hospital.https://www.ohri.ca/programs/clinical_epidemiology/oxford.aspGoogle Scholar The study and data were reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 statement15Page M. McKenzie J.E. Bossuyt P.M. et al.The PRISMA 2020 statement: an updated guideline for reporting systematic reviews.BMJ. 2021; 372: n71Crossref PubMed Scopus (12943) Google Scholar (Supplementary Figure 1).Table 1Characteristics of Studies Included in Final Synthesis (n = 7)First author, yearPublication typeCountryStudy designSGM populationsIBD typesOutcomesAbramovich,7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar 2020Peer-reviewedCanadaCase-control study of transgender people identified using clinic records and general population controls2085 transgender individuals, sexual orientation not reportedCrohn's disease and colitis0.5% of transgender individuals had a diagnosis of Crohn's disease or colitis, compared with 0.6% of cisgender controls; P = .56Dames,8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar 2021Peer-reviewedOnlineCross-sectional patient-delivered online survey of people who had undergone colorectal or pelvic floor surgery14% (n = 87) of study respondents identified as LGBT+31% of respondents CD and 34% of respondents had surgery for UC (not stratified within SGM group)Qualitative data from LGBT+ participants regarding lack of discussion of gay sex, lack of support for gay people, concerns about proctectomy, inability to have receptive anal intercourseDibley,9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar 2014Peer-reviewed manuscriptUnited KingdomMixed-methods study with survey and interviews of gay and lesbian people with IBDSurvey: 50 gay and lesbian people; Interviews: 14 gay men and 8 lesbiansSurvey: CD, n = 26 (52%); UC, n = 16 (32%); other form of IBD, n = 8 (16%)Interviews: CD, n = 10 (45.5%); UC, n = 10 (45.5%), other form of IBD, n = 2 (9%)Survey: Not reaching full potential was a higher priority for gay and lesbian population than reference general populationInterviews: Key themes included LGBT sexual activity, receiving health care, IBD and LGBT life and identity, and coming outFourie,10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar 2022ThesisUnited KingdomQualitative study of people with IBD using phenomenological interviews1 gay man, 1 trans man, 2 bisexual (1 male, 1 female)Not stratified within SGM groupGay and bisexual people reported perianal disease interfered with sexual activity either through body image concerns or presence of a seton that caused interferenceGuardigni,11Guardigni V. Scaioli E. Coladonato S. et al.Inflammatory bowel diseases: a hidden comorbidity in people living with HIV?.J Int AIDS Soc. 2018; 21: 153Google Scholar 2018Conference abstractItalyDescriptive study of patients with IBD seen at an HIV clinic77% of cohort was MSM (n = 13)100% of patients with IBD had UC (n = 17); this was 0.7% of overall clinic populationHIV and ART-related factors not associated with likelihood of IBD flare in this predominantly MSM populationLogel,12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar 2021Conference abstractUnited StatesCross-sectional cohort of transgender and gender-diverse youth from 5 academic medical centers compared with general population prevalence rates from published literature32 (25%) were assigned male at birth and 96 (75%) were assigned female at birthCD and UCEstimated rate of CD 18.4/10,000 transgender and gender-diverse people and UC 7.6/10,000 transgender and gender-diverse people, similar to the general populationSiwak,13Siwak E. Suchacz M.M. Cielniak I. et al.Inflammatory bowel disease in adult HIV-infected patients-a retrospective descriptive study from Warsaw, Poland.HIV Med. 2021; 22: 171-172Google Scholar 2021Conference abstractPolandDescriptive study of patients with IBD seen at an HIV clinic98% of cohort was MSM (n = 49)CD in 7 patients (14%), UC in 41 patients (82%), and 2 (4%) IBD-U20% of patients had IBD flare, all in people on ARTART, antiretroviral therapy; CD, Crohn’s disease; IBD, inflammatory bowel disease; IBD-U, inflammatory bowel disease-unclassified; LGBT, lesbian, gay, bisexual, transgender; MSM, men who have sex with men; UC, ulcerative colitis. Open table in a new tab ART, antiretroviral therapy; CD, Crohn’s disease; IBD, inflammatory bowel disease; IBD-U, inflammatory bowel disease-unclassified; LGBT, lesbian, gay, bisexual, transgender; MSM, men who have sex with men; UC, ulcerative colitis. Our search yielded 481 nonduplicate citations (Figure 1), of which 24 underwent full-text review. We contacted authors of 2 studies to inquire about additional data on SGM individuals, leading to the identification of 1 additional relevant publication. After full-text review, 7 articles were included in the final synthesis.7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar, 8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar, 9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar, 10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar, 11Guardigni V. Scaioli E. Coladonato S. et al.Inflammatory bowel diseases: a hidden comorbidity in people living with HIV?.J Int AIDS Soc. 2018; 21: 153Google Scholar, 12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar, 13Siwak E. Suchacz M.M. Cielniak I. et al.Inflammatory bowel disease in adult HIV-infected patients-a retrospective descriptive study from Warsaw, Poland.HIV Med. 2021; 22: 171-172Google Scholar Most studies assessed either gender identity or sexual orientation. Two studies were on the incidence of IBD and other autoimmune diseases in transgender people. Two studies on IBD and HIV included majority men-who-have-sex-with-men (MSM) populations. The most common study sites were the United States and the United Kingdom (Table 1). Although the number of studies was limited and had small sample sizes, the following 3 major categories emerged: epidemiology of IBD in transgender people, sexual health concerns among SGM people with IBD, and IBD and HIV in MSM. Transgender people are more likely to have chronic mental and physical illnesses than cisgender individuals,16Rich A.J. Scheim A.I. Koehoorn M. et al.Non-HIV chronic disease burden among transgender populations globally: a systematic review and narrative synthesis.Prev Med Rep. 2020; 20101259PubMed Google Scholar which may be the result of sociodemographic and behavioral factors, such as poverty, discrimination, delayed care seeking, and substance use. Abramovich et al7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar retrospectively assessed the prevalence of chronic medical conditions, including IBD, in transgender adults in Ontario, Canada from clinics providing gender-affirming care, using billing codes to ascertain outcomes. Transgender people were significantly more likely to have asthma, chronic obstructive pulmonary disease, diabetes, or HIV compared with general population controls, but Crohn’s disease or ulcerative colitis prevalence was the same in both groups (0.5% for transgender individuals and 0.6% for controls), although the IBD case count was small (n = 71). Logel et al12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar retrospectively estimated autoimmune disease prevalence in individuals 26 years and younger who sought gender-affirming care at 5 academic medical centers in the United States. They used billing codes to identify autoimmune diseases and compared the prevalence with the general population prevalence reported in the literature. They identified higher prevalence of type 1 diabetes, lupus, and Graves’ disease in transgender youth, but the estimated prevalence of IBD did not significantly differ from the general population. These studies suggest that the epidemiology of IBD may be similar in transgender and cisgender populations. No research has assessed IBD epidemiology in other SGM populations, the natural history of IBD in relation to gender-affirming medical and surgical treatment, or the rate of IBD-related complications in SGM people. Furthermore, there is significant potential for bias in both studies, because inclusion was based on identification of transgender individuals receiving care at a limited number of specialized centers, control groups may not have been exclusively cisgender individuals, and the studies relied on billing codes alone to ascertain outcomes. Three studies included data on the sexual health concerns of SGM individuals with IBD. A major theme was the lack of credible, relevant information on sexual health and function for SGM individuals with IBD. In the studies, this concern was predominantly voiced by gay men. They reported that “there is little/no information or support for gay people” who undergo colorectal or pelvic floor surgery,8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar and that there is a need for guidance on receptive anal intercourse after ileoanal pouch surgery.9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar Sexual function after surgery or with perianal disease is a concern for SGM people. Multiple patients reported that surgery or a seton impeded sexual activity.8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar, 9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar, 10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar Others felt that IBD-related changes in the appearance of their perianal area limited their sexual activity.10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar Some patients who had to alter their sexual activities described it as a source of sadness and frustration, although others adjusted to the changes without reporting substantial stress.9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar There were also concerns about having a stoma or scars, which led some gay men to avoid relationships or feel uncomfortable participating in activities in which they would be expected to be shirtless.9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar Many sexual concerns of SGM individuals with IBD were shared with non-SGM people with IBD, including relationship challenges, feelings of inadequacy, body image issues, and embarrassing symptoms during sex.10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar In Dibley et al,9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar lesbian and gay people with IBD were more likely to be concerned about missing out on life experiences than a general IBD population comparison group; whether this was because of changes related to sex or intimacy was not explored. Similarly, Fourie10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar found that people whose IBD interfered with their sexual activities felt that it limited their living a full life, a sentiment that non-SGM individuals also reported. Two abstracts evaluated IBD in MSM living with HIV using cross-sectional studies of HIV-clinic populations.11Guardigni V. Scaioli E. Coladonato S. et al.Inflammatory bowel diseases: a hidden comorbidity in people living with HIV?.J Int AIDS Soc. 2018; 21: 153Google Scholar,13Siwak E. Suchacz M.M. Cielniak I. et al.Inflammatory bowel disease in adult HIV-infected patients-a retrospective descriptive study from Warsaw, Poland.HIV Med. 2021; 22: 171-172Google Scholar Both study populations were predominantly MSM. Most of the individuals had UC (82% in Siwak et al13Siwak E. Suchacz M.M. Cielniak I. et al.Inflammatory bowel disease in adult HIV-infected patients-a retrospective descriptive study from Warsaw, Poland.HIV Med. 2021; 22: 171-172Google Scholar and 100% in Guardigni et al11Guardigni V. Scaioli E. Coladonato S. et al.Inflammatory bowel diseases: a hidden comorbidity in people living with HIV?.J Int AIDS Soc. 2018; 21: 153Google Scholar). Guardigni et al reported that 0.7% of their HIV clinic population had IBD. They found no HIV-related or antiretroviral therapy–related factors associated with IBD flare, although the sample size was small (n = 17). Siwak et al reported that 20% of their patients with IBD had a documented flare after HIV diagnosis and that all occurred in men on antiretroviral therapy. One additional finding from our review was the role of “coming out” and self-disclosure for lesbian, gay, bisexual, transgender, questioning, and other (LGBTQ+) people with IBD. Dibley et al9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar found that a major theme among gay and lesbian people with IBD was the use of similar strategies for coming out about sexual orientation and about having IBD. Patients reported that openness about IBD was important for getting support and that openness about sexual orientation was important for preventing misconceptions and embarrassment. Most studies were small and lacked measurement of both sexual orientation and gender identity. They were descriptive and relied on either administrative data or self-report of SGM and IBD status and outcomes. No studies evaluated interventions. Most studies did not use validated measures of SGM identity. All 3 studies with quantitative outcomes comparing SGM and non-SGM groups had a significant risk of bias based on the Newcastle-Ottawa scoring system.7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar,9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar,12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar The highest-quality studies identified were qualitative research studies. These used many best practices, such as use of trained interviewers, pilot testing, and clear sampling strategies. This review of 7 articles7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar, 8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar, 9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar, 10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar, 11Guardigni V. Scaioli E. Coladonato S. et al.Inflammatory bowel diseases: a hidden comorbidity in people living with HIV?.J Int AIDS Soc. 2018; 21: 153Google Scholar, 12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar, 13Siwak E. Suchacz M.M. Cielniak I. et al.Inflammatory bowel disease in adult HIV-infected patients-a retrospective descriptive study from Warsaw, Poland.HIV Med. 2021; 22: 171-172Google Scholar on IBD epidemiology and patient-reported outcomes in SGM individuals identified the following key themes: IBD incidence and outcomes for transgender people, unaddressed sexual adverse effects of IBD in SGM populations, and issues of identity and self-disclosure. Important additional findings were that there are very few data on SGM individuals with IBD, and the studies that have examined this group are generally at high risk of bias and small, as seen for other health research in SGM populations. Adult and pediatric studies found that transgender people have a prevalence of IBD similar to that of the general population.7Abramovich A. De Oliveira C. Kiran T. et al.Assessment of health conditions and health service use among transgender patients in Canada.JAMA Network Open. 2020; 3e2015036Crossref PubMed Scopus (17) Google Scholar,12Logel S. Whitehead J. Maru J. et al.Transgender and gender-diverse youth have higher prevalence of certain autoimmune disease.Horm Res Paediatr. 2021; 94: 127Google Scholar However, there are many important areas that remain unexplored. The first is whether gender-affirming care through medications, surgery, or both could affect IBD incidence or disease course. Data suggest that hormone levels may impact IBD symptoms and immunity in complex ways. Hormone therapy is associated with an increased risk of ulcerative colitis in postmenopausal women without IBD,17Khalili H. Higuchi L.M. Ananthakrishnan A.N. et al.Hormone therapy increases risk of ulcerative colitis but not Crohn's disease.Gastroenterology. 2012; 143: 1199-1206Abstract Full Text Full Text PDF PubMed Scopus (78) Google Scholar but in postmenopausal women with IBD, hormone therapy may protect against flares.18Kane S.V. Reddy D. Hormonal replacement therapy after menopause is protective of disease activity in women with inflammatory bowel disease.Am J Gastroenterol. 2008; 103: 1193-1196Crossref PubMed Scopus (90) Google Scholar The gastrointestinal effects of hormone therapy for transgender men and women has not been rigorously assessed. Furthermore, stress and trauma are associated with IBD incidence in the general population.19Fuller-Thomson E. West K.J. Sulman J. et al.Childhood maltreatment is associated with ulcerative colitis but not Crohn's disease: findings from a population-based study.Inflamm Bowel Dis. 2015; 21: 2640-2648Crossref PubMed Scopus (23) Google Scholar SGM individuals, especially transgender individuals, experience physical abuse, sexual violence, and intimate partner violence at much higher rates than the general population.20Walters M.L. Chen J. Breiding M.J. The National Intimate Partner and Sexual Violence Survey (NISVS): 2010 Findings on Victimization by Sexual Orientation. National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, 2013Google Scholar The interplay between SGM identity, stress, and trauma and IBD outcomes is an important consideration for future study. Another major theme in these studies was the lack of relevant information for SGM individuals with IBD about sex. Sexual practices like anal sex are not limited to SGM populations, but may be more common or have a more significant cultural role than in non-SGM populations. From a research perspective, existing validated survey instruments on sexual health and function often are not suitable for SGM populations because of implicit heterosexism.21Amarasekera C. Wong V. Jackson K. et al.A pilot study assessing aspects of sexual function predicted to be important after treatment for prostate cancer in gay men: an underserved domain highlighted.LGBT Health. 2020; 7: 271-276Crossref PubMed Scopus (0) Google Scholar There is a need for development and validation of new tools for sexual health research in SGM populations and tailored patient-focused education. The third key theme was the similar skill sets and coping techniques of SGM individuals with IBD. Internalized stigma is a common feature in both IBD and SGM populations and is associated with worse outcomes.22Puckett J.A. Levitt H.M. Internalized stigma within sexual and gender minorities: change strategies and clinical implications.J LGBT Issues Couns. 2015; 9: 329-349Crossref Scopus (55) Google Scholar,23Taft T.H. Keefer L. Leonhard C. et al.Impact of perceived stigma on inflammatory bowel disease patient outcomes.Inflamm Bowel Dis. 2009; 15: 1224-1232Crossref PubMed Scopus (97) Google Scholar Resilience can promote better health-related quality of life. As Dibley et al9Dibley L. Norton C. Schaub J. et al.Experiences of gay and lesbian patients with inflammatory bowel disease: a mixed methods study.Gastrointest Nursing. 2014; 12: 19-30Crossref Scopus (0) Google Scholar identified, the skills of coming out and identity formation for SGM people with IBD may overlap. This role for resilience in coping with health challenges has also been observed in SGM individuals’ responses to the COVID-19 pandemic.24Gonzalez K.A. Abreu R.L. Arora S. et al."Previous resilience has taught me that i can survive anything:" LGBTQ resilience during the COVID-19 pandemic.Psychol Sex Orientat Gend Divers. 2021; 8: 133-144Crossref Google Scholar Better understanding of the skills that SGM individuals use to combat stigma and promote resilience may benefit all patients with IBD. We excluded case reports based on our predetermined methodology, but several case reports highlighted important areas of consideration. One is the use of colonic or ileal tissue for neovagina construction. Garcia et al25Garcia M.M. Shen W. Zhu R. et al.Use of right colon vaginoplasty in gender affirming surgery: proposed advantages, review of technique, and outcomes.Surg Endosc. 2021; 35: 5643-5654Crossref PubMed Scopus (6) Google Scholar reported a case series of 22 women who underwent vaginoplasty using the right colon, including 1 woman who developed Crohn’s disease postoperatively that did not involve the neovagina. There were also case reports of IBD flares occurring in individuals with a colonic neovagina, 1 in which the neovagina was involved26Hennigan T.W. Theodorou N.A. Ulcerative colitis and bleeding from a colonic vaginoplasty.J R Soc Med. 1992; 85: 418-419PubMed Google Scholar and another in which the neovagina was spared.27Grasman M.E. van der Sluis W.B. de Boer N.K. Neovaginal sparing in a transgender woman with ulcerative colitis.Clin Gastroenterol Hepatol. 2016; 14: e73-e74Abstract Full Text Full Text PDF PubMed Google Scholar These issues highlight the importance of additional research to evaluate the incidence, associated risks, and management of IBD in people with neovaginas. An additional consideration was that many existing studies of sex in IBD do not report sexual orientation or behaviors. Of the 54 mostly cross-sectional studies on sexuality in IBD included based on our search terms, only 8 included data on sexual orientation and only 3 articles reported separate results for LGBTQ participants.8Dames N.B. Squire S.E. Devlin A.B. et al.‘Let's talk about sex’: a patient-led survey on sexual function after colorectal and pelvic floor surgery.Colorectal Dis. 2021; 23: 1524-1551Crossref PubMed Scopus (0) Google Scholar,10Fourie S. An Interpretative Phenomenological Study Exploring the Intimacy and Sexuality Experiences of People Living with Inflammatory Bowel Disease. Doctoral thesis. King’s College London, 2022Google Scholar The other articles did not include data on sexual orientation, with the implicit assumption that all participants were heterosexual. Population-based studies of IBD need to include sexual orientation and gender identity questions to allow for data collection around SGM status. This is critical in many areas of IBD research, as the effects of stigma, mistrust, and access to care for SGM people may broadly influence IBD outcomes and interact with other sociodemographic factors. High-quality data are lacking on the effects of gender-affirming care on IBD, sexual function in SGM people with IBD, outcomes after IBD-related surgery, effects of pre-exposure prophylaxis and antiretroviral therapy for HIV on IBD, and best practices for SGM care in gastroenterology. Given the high rates of mental health disorders and interpersonal and sexual violence experienced by SGM individuals,20Walters M.L. Chen J. Breiding M.J. The National Intimate Partner and Sexual Violence Survey (NISVS): 2010 Findings on Victimization by Sexual Orientation. National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, 2013Google Scholar there is a need for research on how to affect engagement in care and what practices should be implemented, especially around sensitive examinations and procedures. Despite searching multiple databases, we may have missed studies present in the gray literature or not in English. A strength of our review is the breadth of our investigation into the existing literature on this topic. To our knowledge, this is the first systematic review on IBD in SGM populations. In addition to assessing the findings and merits of existing research, we have identified research gaps and a need for improved study design. This study summarized the limited data available on SGM people with IBD and their experiences. Throughout the IBD literature, SGM data are poorly reported, including a lack of robust gender identity data collection and limited collection of sexual orientation and sexual behavior data. Future IBD research should collect data on SGM status, as recommended in the National Academies of Sciences, Engineering, and Medicine 2022 report.4National Academies of SciencesEngineering, and Medicine; Division of Behavioral and Social Sciences and Education; Committee on National Statistics; Committee on Measuring Sex, Gender Identity, and Sexual Orientation.in: Bates N. Chin M. Becker T. Measuring Sex, Gender Identity, and Sexual Orientation. National Academies Press, 2022Google Scholar This includes identification of the necessary information for each study, be it gender identity, genetic information, hormone levels, anatomy, or social conditioning, and the use of validated measures to assess these. Furthermore, the diversity of SGM individuals includes intersectional identities across race, class, ability, and other factors, which are important to consider, as these may also alter the needs, outcomes, and experiences of people with IBD. SGM people have been understudied in luminal gastroenterology both in isolation and in intersectional contexts. Research in this area is important for the creation of interventions to improve the care experiences of SGM people with IBD and guide best practices.