Clinical and Psychosocial Burden of Inflammatory Bowel Disease Among Transgender Individuals: A National BioResource Cohort Study

Abstract

Purpose

Transgender and gender non-conforming (TGNC) individuals are under-represented in inflammatory bowel disease (IBD) research, and little is known about their diagnostic experiences, disease burden, mental health comorbidity, or quality of life (QoL). We therefore aimed to characterise clinical features, diagnostic timelines, comorbidity, and QoL among TGNC people with IBD and to contextualise key outcomes using a matched cisgender cohort.

Patients and Methods

We conducted a nationwide cohort study within the IBD BioResource population. Using questionnaires and linked BioResource data, we collected information on demographics, clinical history, gender-affirming care, comorbidity, and QoL. TGNC participants were matched to cisgender controls by sex and age category for a contextual and exploratory comparison. Analyses were performed using regression models.

Results

Thirty-nine TGNC participants responded (46.2% Crohn’s disease, 43.6% ulcerative colitis, 10.3% IBD-unclassified). Median time from symptom onset to diagnosis was 10.5 months (interquartile range 6.0–18.0), 62.3% reported prior hospitalisation and 28.2% prior IBD surgery. Psychiatric comorbidity was frequent (79%). Gender-affirming hormone therapy was reported in 30.7% and prior gender-affirming surgery in 17.9%. Matched analyses demonstrated a trend towards longer diagnostic delays and higher rates of hospitalisation and IBD-related surgery in TGNC participants. Psychiatric comorbidity was significantly higher (79.5% vs 56.8%, p=0.033). QoL impairment was substantial and broadly comparable between groups.

Conclusion

TGNC individuals with IBD demonstrated a high burden of psychiatric comorbidity and signals of longer diagnostic timelines and poorer disease control compared with cisgender peers. These findings highlight potential disparities across IBD care pathways and underscore the need for larger, dedicated studies.

Introduction

Gender identity, a person’s innate sense of their own gender, has become a subject of significant societal discourse with growing awareness of the minority of people who identify as transgender or gender non-conforming (TGNC) - defined as those whose gender identity does not align with either the sex they were assigned at birth based upon external genitalia or societal expectations of gender.1 The prevalence of identifying as TGNC is rising, and census data have shown that over 250,000 individuals in England and Wales identify as TGNC with a higher prevalence in younger adults.2 TGNC individuals have been found to suffer from poorer health outcomes,3 have higher rates of physical4,5 and psychiatric comorbidity,6 and face delays in diagnosis7 compared to cisgender individuals. However, they are rarely captured in large-scale cohorts, registries, or interventional studies, limiting our understanding of how gender diversity may intersect with chronic disease and healthcare needs.

Inflammatory bowel disease (IBD) is a chronic immune-mediated inflammatory disorder of the gastrointestinal tract and is associated with increased medical and psychiatric comorbidity8,9 which in turn is linked to worse clinical outcomes.10,11 Diagnostic delay is also associated with worse outcomes including higher rates of surgery and hospitalisation.12 Furthermore, psychosocial issues are common in IBD and have an established bidirectional relationship with outcomes.13

Despite these overlapping areas of clinical vulnerability, little is known about the intersection between IBD and minority gender identity.14,15 TGNC individuals who suffer from IBD (TGNC-IBD) have unique health needs, particularly regarding interactions between gender-affirming medication or surgery and their IBD as well as potentially compounded minority stress from the duality of holding a minority gender identity and suffering from a chronic disease.16 Furthermore, TGNC-IBD individuals report dissatisfaction with IBD services and a lack of awareness and training amongst staff.17 However, the clinical features, diagnostic timelines, comorbidity burden, and the impact of IBD on QoL in TGNC-IBD individuals remain poorly understood and under-researched.

We hypothesised that minority stress, including stigma and healthcare avoidance, may contribute to delayed diagnosis, altered healthcare utilisation patterns, and increased psychological burden in TGNC-IBD individuals. We therefore aimed to utilise a national UK BioResource18 cohort to characterise the clinical and patient-reported burden of IBD amongst TGNC individuals and to contextualise key outcomes using a matched cohort of cisgender individuals. We assessed patterns in time to diagnosis, prior hospitalisation and surgery, psychiatric comorbidity, and QoL indices within an exploratory analytical framework. These analyses were intended to identify potential signals of disparity and generate hypotheses to inform adequately powered future studies. Preliminary findings from this study were previously presented in abstract form at the European Crohn’s and Colitis Organisation annual meeting 2026 and published as a conference abstract.19

Materials and Methods

Study Design and Setting

This study was conducted as a national, retrospective cohort analysis through the IBD BioResource, a biobank comprising 49,600 individuals with clinician-confirmed IBD who are recruited from 105 hospitals across the UK.18 IBD BioResource enrolment is performed by research nurses and clinicians using a combination of case note review, patient interview and patient questionnaires and periodic data validation exercises are performed with independent reassessment of data to ensure accuracy. Access to the NIHR IBD-BioResource was approved by the NIHR IBD-BR Steering Committee (approval reference number: NBR275).

Ethical approval was obtained from the St George’s University of London Research Ethics Committee.

Participants

Eligible participants were: (i) ≥18 years old; (ii) clinician confirmed IBD (either ulcerative colitis (UC), Crohn’s disease (CD) or IBD-Unclassified (IBD-U)); and those (iii) self-identifying as TGNC. The BioResource holds gender identity data for only a minority of participants. Therefore, all individuals who had previously consented to be contacted about recall studies were invited by Email to participate. Invitations were distributed in batches over a four-week period in August 2025, and the study remained open for one month following each participant’s invitation. The invitation provided information about the study and its eligibility criteria, including self-identification as TGNC which represents the accepted standard for classification of gender identity. Eligible participants were provided with a personalised link to complete a bespoke online questionnaire hosted through an online data collection tool called REDCap (Research Electronic Data Capture). This census-style recruitment approach was used to maximise the opportunity for eligible TGNC individuals within the BioResource to participate.

A comparator cohort of cisgender individuals, matched by age category and sex assigned at birth, was also recruited from the BioResource to enable contextual comparative analyses. Comparator participants were contacted by Email and invited to participate specifically as members of the control group. All study data were pseudonymised using unique study identifiers, with identifiable information stored separately from questionnaire responses and accessible only to authorised members of the research team.

Given the prevalence of TGNC identity at 0.5%,2 we estimated that there would be 248 individuals within the total BioResource population (49,600) who identify as TGNC. Assuming a response rate of 25%, which is comparable to previous BioResource recall studies,20 this would provide approximately 62 responses.

Questionnaire Development and Data Collection

Our study was designed to examine a broad range of factors specific to the intersection of gender identity and IBD. As no existing validated instrument exists that captures the breadth of these experiences, a bespoke questionnaire was developed. TGNC-IBD individuals were involved in questionnaire development through patient consultation, during which participants reviewed the proposed content and terminology and provided feedback regarding the relevance, sensitivity, acceptability and clarity of individual questions. This iterative process informed revisions to the questionnaire, the inclusion of patient-prioritised topics and its overall structure. Although the questionnaire was not formally pilot-tested as a separate study, this consultation process provided iterative review and refinement prior to its use. The development process and broader experiences identified through this work have previously been described.17 Terms used to describe gender identity were used in concordance with Stonewall definitions,1 (Supplementary Appendix 1).

QoL items were informed by domains represented within established IBD measures but were not intended to constitute a validated QoL instrument. To allow for a comparative analysis, both the TGNC and cisgender cohorts completed this same questionnaire. These outcomes should therefore be interpreted as exploratory patient-reported measures rather than validated health-related QoL scores. The full questionnaire can be seen in Supplementary Appendix 2.

Outcomes

The primary outcomes of interest were:

1. Time to diagnosis (months) – defined as the time from onset of symptoms to formal diagnosis.

2. History of prior hospitalisation or a history of prior surgery due to their IBD.

3. Presence of psychiatric comorbidity.

4. Patient-reported indices on the impact of IBD on their QoL. This was assessed through single-item global QoL measures and functional-impact questions on social participation, daily activities, energy levels, and sexual health with data collected through bespoke Likert scales informed by domains used in validated IBD QoL instruments (e.g IBDQ).21

Additionally, data were collected on secondary outcomes:

• Demographics: age, sex assigned at birth, current gender identity, and ethnicity.

• Current IBD therapy and presence of perianal disease.

• Gender-affirming care: use of hormone therapy, rates of gender-affirming surgery, and perioperative complications.

• Social factors: smoking, alcohol intake, and concurrent medications.

Matching Strategy

Given the under-representation of TGNC individuals in clinical datasets, the analysis was designed to maximise inclusion whilst maintaining comparability between groups. TGNC individuals were matched 1:1 to cisgender controls based on exact agreement in age category and sex assigned at birth. Where insufficient unique controls were available within strata, controls were reused to enable inclusion of additional TGNC individuals.

Match quality was assessed by examining post-matching distributions of age category and sex assigned at birth. Standardised mean differences before and after matching are provided in Supplementary Appendix 3.

Statistical Analysis

Comparative analyses were exploratory and intended to contextualise findings within the TGNC cohort rather than formally test between-group hypotheses. Descriptive statistics summarised baseline characteristics and outcomes. Continuous variables are presented as means (standard deviation (SD)) or medians (interquartile range (IQR)), and categorical variables as counts and percentages. QoL responses were scored from 0–4, with lower scores indicating less negative impact from IBD on their QoL.

Matched comparisons used linear regression for continuous outcomes and logistic regression for binary outcomes, with robust variance estimation to account for matching and reuse of controls. Comparative regression analyses were restricted to the predefined outcomes of interest: time to diagnosis, prior IBD-related hospitalisation, prior IBD-related surgery, psychiatric comorbidity and patient-reported QoL domains. These outcomes represented the principal clinical and psychosocial domains that the study was designed to characterise; no data-driven variable-selection procedure was undertaken.

QoL outcomes were analysed as continuous variables; distributions were approximately symmetric which supported the use of linear regression. Multivariable models adjusted for age category, sex assigned at birth, ethnicity, IBD subtype, and psychiatric and physical comorbidity, and were interpreted cautiously given limited events per variable.

Effect estimates are reported as β coefficients or odds ratios (OR) with 95% confidence intervals (CI) and two-sided p values. Statistical significance was defined as p<0.05. Analyses were conducted in SPSS.

Analyses were conducted using available data for each outcome, were restricted to participants with available data for each outcome, and sample sizes are reported for all analyses. No imputation was performed.

Patient and Public Involvement

TGNC-IBD individuals were involved in the design of this study. They contributed to the development and refinement of the questionnaire, providing feedback on the relevance and acceptability of survey questions. Their input informed the inclusion of patient-prioritised topics and overall structure.

Ethics Approval and Informed Consent

Ethical approval was provided by the Research Ethics Committee of St George’s, University of London (ref 2024.0114). Written informed consent was provided by each patient. The study protocol conforms to the ethical guidelines of the 1975 Declaration of Helsinki.

Results

Characteristics of the TGNC-IBD Cohort

39 participants identified as TGNC and completed the survey, based upon our calculations described above in the methods section suggesting there are 248 TGNC-IBD individuals within the BioResource. This is an estimated 15.7% response rate (Figure 1).

Figure 1.

Schematic of patient selection and analysis. Created in BioRender. Colwill, (M) (2026) https://BioRender.com/oggbp4i.

Gender identities included non-binary (30.8%), trans woman (23.1%), trans man (5.1%), gender non-conforming (15.4%), and other identities (25.6% combined categories). Participants selecting “prefer not to say” for gender identity were still included where they self-identified as TGNC. Sex assigned at birth was male in 56.4% and female in 38.5% with 5.1% preferring not to say. Ages were well distributed, with one-third aged 25–34 years. Ethnic diversity was limited, with 89.7% identifying as white. IBD subtypes comprised CD (46.2%), UC (43.6%), and IBD-U (10.3%). The demographics of matched TGNC and cisgender cohorts are summarised in Table 1.

Table 1.

Summary of Demographics of TGNC Individuals Responding to BioResource Survey Compared to Age- and Sex-Matched Cisgender Control Group

Characteristic		TGNC: n (%)	Control: n (%)
Age Range
	18-24	4 (10.8%)	3 (8.1%)
	25-34	13 (35.1%)	14 (37.8%)
	35-44	5 (13.5%)	5 (13.5%)
	45-54	7 (18.9%)	7 (18.9%)
	55-64	3 (8.1%)	3 (8.1%)
	65 and over	5 (13.5%)	5 (13.5%)
Sex assigned at birth
	Male	15 (40.5%)	15 (40.5%)
	Female	22 (59.5%)	22 (59.5%)
Gender Identity
	Non-Binary	12 (32.4)	-
	Trans woman	9 (24.3)	-
	Trans man	2 (5.4)	-
	Gender Non-Conforming	6 (16.2)	-
	Queer	2 (5.4)	-
	Gender Fluid	1 (2.7)	-
	Agender	1 (2.7)	-
	Prefer Not to Say	4 (10.8)	-
	Cisgender	-	37 (100)
Ethnicity
	White	35 (94.6)	33 (89.2)
	Asian	0	4 (10.8)
	Black	0	0
	Mixed Race	0	0
	Prefer Not to Say	2 (5.4)	0
IBD Sub-Type
	Crohn’s Disease	17 (45.9)	20 (54.1)
	Ulcerative Colitis	16 (43.2)	16 (43.2)
	IBD-Unclassified	4 (10.8)	1 (2.7)

Notes: For Full TGNC Data (n=39) Prior to Matching See Supplementary Appendix 4.

Findings of the TGNC-IBD Cohort

Median time from self-reported onset of symptoms to diagnosis was 10.5 months (IQR 6.0–18.0) for the whole cohort (subtype breakdown was CD: 12 months (IQR 6.0–180); UC/IBD-U: 9.0 months (IQR 6.0–24.0). Rates of prior IBD-related hospitalisation were 24/39 (62.3%) whilst 11/39 (28.2%) of TGNC-IBD respondents reported prior IBD-related surgery. 31/39 (79%) of TGNC-IBD participants reported at least one psychiatric diagnosis with depression, anxiety, attention deficit hyperactivity disorder, and autism spectrum conditions the most frequently reported (Table 2).

Table 2.

Breakdown of Rates of Psychiatric Comorbidity in the TGNC-IBD and Matched Cisgender Cohort

Mental Health Disorder	TGNC n (%)	Cisgender n (%)
Depression	20 (51.3)	8 (21.6)
Anxiety	14 (35.9)	9 (24.3)
ADHD	8 (20.5)	1 (2.7)
Autism spectrum condition	11 (28.2)	0 (0)
Panic disorder	4 (10.3)	3 (8.1)
Personality disorder	2 (5.1)	1 (2.7)
Bipolar disorder	1 (2.6)	2 (5.4)
OCD	1 (2.6)	1 (2.7)
PTSD	1 (2.6)	0 (0)
Anorexia nervosa	0 (0)	1 (2.7)
Bulimia nervosa	0 (0)	0 (0)
Schizophrenia	0 (0)	0 (0)
No mental health diagnosis	8 (20.5)	16 (43.2)

Abbreviations: ADHD, Attention Deficit Hyperactivity Disorder; OCD, Obsessive Compulsive Disorder; PTSD, Post-Traumatic Stress Disorder.

12 (30.7%) respondents were currently taking gender-affirming hormone therapy, and 7 (17.9%) had undergone previous gender-affirming surgery.

QoL impairment was common across multiple domains. Mean overall QoL score was 2.27 ± 0.91 (SD), and mean energy-related QoL was 2.21 ± 0.86, reflecting a substantial impact on global wellbeing and energy levels. Impairment was also observed in ability to perform activities of daily living (mean 1.48 ± 1.18), attend social activities (mean 1.12 ± 1.08), sports participation (mean 1.31 ± 1.38), impact on sexual life (mean 1.35 ± 1.54), attend events with worrying about the location of a toilet (mean 1.36 ± 1.43), and less so in financial impact (mean 0.62 ± 1.48) (Figure 2). The distribution of scores across domains indicated considerable heterogeneity within the cohort, with some individuals reporting minimal impact and others reporting marked impairment.

Figure 2.

Radar plot of the impact of IBD on different quality of life domains in the TGNC-IBD population in the preceding 4 weeks. 0=No impact, 4=Negatively impacted all the time.

Abbreviations: IBD, Inflammatory Bowel Disease; QoL, Quality of life; TGNC-IBD, Transgender or Gender Non-Conforming with IBD.

Comparison to Matches Cisgender Group

Matching on sex at birth and age category resulted in well-balanced TGNC and cisgender cohorts, with comparable distributions across variables following matching (Table 1). Six controls were reused to generate the matched control cohort. Two TGNC-IBD individuals did not disclose their sex at birth and were therefore excluded from the matched analysis.

Within the matched cohort, TGNC individuals experienced a numerically longer time to diagnosis (median 10.5 months, IQR 6.0–18.0, n=37) compared with cisgender controls (8 months, IQR 4.0–12.0, n=37), although this difference was not statistically significant in adjusted analyses (adjusted β +5.76, 95% CI −5.52–17.04, p=0.317). In IBD subtype analyses, TGNC-IBD individuals with UC or IBD-U experienced a numerically longer time to diagnosis (median 12.0 months, IQR 6.0–24.0, n=20) than controls (median 8.5 months, IQR 6.0–18.0, n=17) but this did not reach statistical significance in adjusted analysis (β = +12.2 months, 95% CI −6.5 to 30.8, p=0.200). When assessing CD, TGNC-IBD individuals also experienced a numerically longer time to diagnosis (median 12.0 months, IQR 6.0–16.5, n=17) than controls (median 5.5 months, IQR 3.75–12, n=20) and this did not reach statistical significance in adjusted analysis (β = +2.6 months, 95% CI −7.9–3.3, p=0.423). Higher rates of prior hospitalisation (64.7% vs 51.4%) and prior IBD-related surgery (29.4% vs 16.2%) were observed amongst TGNC individuals, although neither were statistically significant in adjusted models (adjusted odds ratio (aOR) 1.95, 95% CI 0.70–5.44, p=0.205 and aOR 5.13, 95% CI 0.90–29.05, p=0.066, respectively). Psychiatric comorbidity was significantly more prevalent amongst TGNC individuals, with 79.5% reporting at least one psychiatric diagnosis compared with 56.8% of cisgender controls (aOR 4.03, 95% CI 1.12–14.46, p=0.033), reflecting a large absolute difference with limited precision. Full breakdowns can be seen in Table 2.

Across QoL outcomes, impairment was substantial but broadly comparable between groups (Figure 3). Energy-related QoL impact differed between groups, with TGNC individuals reporting slightly lower impact than controls (mean 2.21 ± 0.86 vs 2.62 ± 1.14), and it was the only statistically significant difference (β −0.52, 95% CI −1.02 to −0.02, p=0.043).

Figure 3.

Adjusted differences in quality of life scores between TGNC-IBD participants and matched cisgender controls across all domains based on mixed-effects model. Negative β indicates lower impact of IBD on quality of life in TGNC individuals than cisgender controls.

Discussion

Summary

This study provides, to our knowledge, the first national characterisation of clinician-confirmed IBD in the TGNC population. We have described diagnostic timelines, healthcare utilisation, comorbidity and use of gender-affirming therapies. The matched analyses demonstrated potential shifts to longer diagnostic delays and higher rates of hospitalisation and IBD-related surgery in TGNC participants. Additionally, psychiatric comorbidity was significantly higher in TGNC individuals compared to the cisgender cohort (78.4% vs 56.8% respectively, p=0.048). QoL impairment was substantial across all domains and broadly comparable between cohorts. Taken together, these findings suggest that TGNC individuals with IBD experience substantial clinical and psychosocial burden and may face challenges across key aspects of holistic IBD care, particularly in relation to mental health.

Although not statistically significant, the consistent numerical trend toward a longer time to diagnosis amongst TGNC individuals compared with matched cisgender IBD controls suggests a potential delay in diagnosis within this group. Additionally, the median time to diagnoses in our study for TGNC individuals (CD: 12 months; UC/IBD-U: 9.0 months) was longer than in a previous study by Walker et al, which found a time to diagnosis from onset of symptoms of 7.6 months in CD and 3.3 months in UC,22 and similarly in a meta-analysis of 101 studies (8.0 and 3.7 months for CD and UC, respectively).12 Diagnostic delays in TGNC patients have been reported across other disease areas and may reflect structural inequities, including reduced healthcare utilisation, stigma, and limited clinician familiarity with gender-affirming care.7,23 This is an area of particular concern in the TGNC-IBD population given the negative impact delayed diagnosis can have on outcomes in IBD12 and such delays may plausibly contribute to greater disease burden over time and could be relevant to the observed patterns of healthcare utilisation in this cohort.12

Psychiatric comorbidity was significantly more common amongst TGNC-IBD participants, with over three quarters reporting at least one mental health condition and with this higher prevalence persisting after multivariable adjustment. The high prevalence of psychiatric comorbidity observed in this cohort is consistent with the mental health burden associated with IBD24 and with minority stress experienced by TGNC individuals.25,26 It has previously been demonstrated that there is a bidirectional relationship between mood disorders and clinical outcomes in IBD,27 and the higher prevalence of psychiatric comorbidity in the TGNC cohort we have identified may have important implications for disease experience and engagement with care. Notably, the prevalence observed in our study was higher than estimates for the general TGNC population (79% vs 56%),25 suggesting that the intersection of chronic disease and minority gender identity may be associated with an additional psychosocial burden, underscoring the need for intersectional approaches to IBD care.

In our study, 30.7% of participants reported currently taking gender-affirming hormone therapy and 17.9% reported having undergone previous gender-affirming surgery. Both figures are lower than those reported in the wider UK TGNC population, where use of hormone therapy ranges from 52–95%28 and rates of gender-affirming surgery are approximately 35%.29 This difference may reflect ongoing concerns regarding the impact of gender-affirming hormone therapy and surgical interventions in individuals with IBD.16,17 These findings raise questions regarding access to, and decision-making around, gender-affirming care in TGNC individuals with IBD and warrant further investigation.

Our findings indicate that TGNC individuals with IBD experience a substantial absolute burden of disease-related QoL impairment, which was broadly comparable to that of cisgender controls, with the exception of the energy domain. This suggests that the observed impairment primarily reflects the pervasive impact of IBD and appears to be driven primarily by the burden of chronic inflammatory disease. Whilst previous studies have reported lower health-related QoL amongst TGNC individuals compared with cisgender populations in the general community,30,31 our results indicate that within an IBD population where disease burden is already high, QoL impairment is substantial across all gender identities.

An important finding from this study is the challenge of identifying and recruiting TGNC individuals within existing IBD research infrastructure. Gender identity is not routinely or consistently captured within many clinical datasets and registries, meaning that the number of potentially eligible TGNC participants within the BioResource could only be estimated. This limits both targeted recruitment and calculation of a conventional response rate. Future IBD cohorts should consider systematic, inclusive collection of gender identity data, with appropriate safeguards for confidentiality, alongside co-designed recruitment strategies developed with TGNC communities. Improving representation is important not only for understanding potential disparities in care but also to ensure that future research is sufficiently powered to examine outcomes within this population.

Strengths and Limitations

This study has several notable strengths. In this under-researched field, it is the first national study of TGNC-IBD individuals identified using a dedicated IBD research database and characterised using a bespoke questionnaire. Recruitment through the IBD BioResource ensured that all participants had clinician-confirmed disease, overcoming a key limitation of prior work that relied on self-reported IBD status. The survey was written in collaboration with TGNC individuals, enhancing sensitivity, acceptability, and face validity. Inclusion of an age- and sex-assigned-at-birth matched cisgender control group enabled contextual interpretation of clinical and psychosocial outcomes. Additionally, the study incorporated a broad set of clinical, demographic, gender-affirming care, and QoL variables, offering a multidimensional view of the TGNC-IBD population.

Several important considerations should be noted when interpreting these findings. Although this study draws from a large national cohort, the absolute number of TGNC participants was relatively modest, reflecting the low population prevalence and historical under-representation of this group in research. The response rate, whilst lower than in previous similar BioResource studies (15.7% vs 23.9%20), reflects challenges inherent to engaging with a heavily stigmatised group as discussed. The reuse of control observations, whilst necessary to maximise inclusion of TGNC participants, may limit precision, and some binary outcomes were sparsely represented, limiting the stability of multivariable models. Furthermore, the modest sample size limited precision for some outcomes such as diagnostic delay and hospitalisation.

The study was not powered to detect modest between-group differences, and absence of statistical significance should therefore not be interpreted as evidence of equivalence or absence of an association. Wide confidence intervals around several estimates demonstrate substantial statistical uncertainty, particularly for binary outcomes with few events. Accordingly, the regression analyses should be regarded as exploratory and hypothesis-generating rather than confirmatory.

The study design means self-selection bias may have arisen because individuals with more severe disease, poorer mental health, or negative healthcare experiences may have been more motivated to participate, which may have influenced estimates of disease burden and psychosocial distress. Additionally, TGNC individuals disengaged from healthcare services, including those with the worst experiences, would not have participated in BioResource. The cohort also lacked ethnic diversity, mirroring current TGNC and IBD research data, potentially limiting generalisability.

Whilst data were linked to BioResource clinical data, several variables such as gender-affirming treatments were self-reported and subject to recall bias or misclassification. Differential misclassification may have occurred between self-reported and clinician-recorded variables, and recall bias may also have affected time to diagnosis data. The design also precludes causal inference and limits assessment of temporal relationships between gender-affirming care, healthcare utilisation and psychological wellbeing. These limitations are intrinsic to observational studies in under-represented populations. Additionally, the QoL questionnaire had not undergone formal psychometric validation. This reflects both the novelty of the study and the lack of existing instruments specifically developed for individuals with TGNC-IBD. Nevertheless, the questionnaire was co-designed with TGNC-IBD individuals to improve face validity and ensure that the included domains were relevant and meaningful to the target population.

Future Work

Our findings highlight the need for longitudinal prospective cohort studies to better understand how TGNC identity intersects with IBD care pathways and outcomes.

Conclusions

This study provides the first nationally representative insight into the clinical and psychosocial characteristics of TGNC individuals living with IBD who have historically been under-represented in clinical research. TGNC individuals with IBD demonstrate a high burden of psychiatric comorbidity and substantial healthcare utilisation, alongside a considerable absolute impact of IBD on QoL. These findings underscore the importance of inclusive IBD care pathways, including attention to psychological support and improved recording of gender identity, and highlight priorities for future research.

Funding Statement

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.

Abbreviations

ADHD, Attention Deficit Hyperactivity Disorder; aOR, Adjusted Odds Ratio; CD, Crohn’s Disease; CI, Confidence Interval; IBD, Inflammatory Bowel Disease; IBD-U, Inflammatory Bowel Disease–Unclassified; IQR, Interquartile Range; NIHR, National Institute for Health and Care Research; OCD, Obsessive Compulsive Disorder; OR, Odds Ratio; PTSD, Post-Traumatic Stress Disorder; QoL, Quality of Life; REDCap, Research Electronic Data Capture; SD, Standard Deviation; TGNC, Transgender and Gender Non-Conforming; TGNC-IBD, Transgender and Gender Non-Conforming Individuals with Inflammatory Bowel Disease; UC, Ulcerative Colitis.

Data Sharing Statement

The deidentified data are available on reasonable request from the NIHR IBD BioResource to bona fide researchers with ethics approved projects by applying to the NIHR IBD BioResource at https://www.ibdbioresource.nihr.ac.uk/index.php/resources/applying-for-access-to-the-ibd-bioresource-panel/.

Author Contributions

All authors made a significant contribution to the work reported, whether that is in the conception, study design, execution, acquisition of data, analysis and interpretation, or in all these areas; took part in drafting, revising or critically reviewing the article; gave final approval of the version to be published; have agreed on the journal to which the article has been submitted; and agree to be accountable for all aspects of the work.

Disclosure

MC has received speaker travel grants from Celltrion, Pfizer, Dr Falk, Takeda, Abbvie, Johnson & Johnson and Ferring, speaker fees for educational lectures from Takeda and Pfizer and served as an advisory board member for Dr Falk. RP – advisory board for Galapagos; Celltrion educational sponsorship. CR – has received speaker fees or travel grants from Abbvie, Alfasigma, Dr Falk, Ferring, and Johnson & Johnson. The authors report no other conflicts of interest in this work.