Introduction

Although epidemiologic data to analyze disparities in gastrointestinal (GI) cancer incidence, prevalence, and mortality among sexual and gender minority (SGM) individuals is limited [1], it is well known that risk factors for GI cancers, such as colorectal and anal, disproportionately affect SGM populations [2]. Sexual minority men (SMM) are more likely to be diagnosed with human immunodeficiency virus (HIV) and human papillomavirus (HPV) and have higher rates of substance use than their heterosexual cisgender counterparts. Similarly, sexual minority women (SMW) tend to exercise less and have higher rates of obesity than heterosexual cisgender women. All of which are risk factors for developing GI cancers [3,4,5,6,7].

During and after cancer treatment, SGM individuals tend to experience worse psychosocial outcomes (e.g., anxiety, poorer social support) than heterosexual cisgender cancer survivors due to structural factors that privilege cisgender and heterosexual identities [8,9,10,11]. Even though studies have extensively analyzed the psychosocial health of SGM people with cancer, most focus on people diagnosed with breast and prostate cancer [10, 12]. Despite the high prevalence of GI cancers, studies analyzing its impact on the psychosocial health of SGM individuals are scarce.

Boehmer et al. [13, 14] found that sexual minority people with colorectal cancer were more likely to experience anxiety and worse mental health than their heterosexual cisgender peers. Although these differences were no longer significant after adjusting for social, contextual, and psychological factors, the authors hypothesize that individuals’ use of mental healthcare services before cancer diagnosis and previous experiences of discrimination may have attenuated the contribution of sexual orientation to mental health in the statistical models [13]. Furthermore, younger age, anxiety, depression, and embarrassment due to having a stoma were unique contributors to the mental health of sexual minority people with colorectal cancer [15]. Through qualitative inquiry, this population also expressed challenges with social support, economic stability, and interacting with healthcare providers [16]. Finally, in a study conducted in Brazil with 19 SMM with anal cancer, Mauro et al. [17] found that this population experiences worse quality of life and sexual functioning during and after cancer treatment compared to pre-treatment scores.

Although the previous studies shed light on the psychosocial health of SGM people with some GI cancers, they were limited to cisgender participants [13,14,15] with small SGM sample sizes [17]. The present study expands on this body of literature by including sexual minority people and transgender and non-binary (TGNB) individuals from a nationwide survey study conducted in the USA. In this study, we aimed to (1) describe the psychosocial health of SGM people with GI cancers and (2) identify differences in psychosocial health outcomes among SGM people with colorectal or anal cancers.

We conducted a concurrent mixed-methods secondary analysis with identical samples [18]. The purpose of using a mixed-methods design is to converge quantitative and qualitative data to gain a holistic understanding of cancer’s impact on the psychosocial health of SGM individuals with GI cancers [19]. Combining both types of data helped us capture, expand, and contrast different aspects of the phenomena of study [20]. Quantitative and qualitative data were assigned the same weight throughout data analysis and interpretation. The questions displayed in Supplementary Table 1 guided the analysis.

Materials and methods

Deidentified data was obtained from “OUT: The National Cancer Survey,” a web-based survey conducted by the National LGBT Cancer Network in the USA between September 2020 and March 2021 [21]. The survey collected information on mental, physical, and social health and the participants’ previous experiences with healthcare providers and institutions. The Western Institutional Review Board (IRB) approved the “OUT: The National Cancer Survey.” Temple University’s IRB provided an exemption for the secondary data analysis.

Procedures and participants

A non-probability sample of SGM cancer survivors was recruited through community-based methods. The survey was advertised via social media, community networks, and cancer centers. To improve the representation of people of color, the study directors worked closely with community centers that serve SGM individuals from racial and ethnic minority groups, who helped disseminate the survey. Those interested in participating accessed the survey with a link. First, questions to confirm eligibility were presented. Those eligible completed the anonymous 30-min survey.

To be included in the study, participants had to (1) have been diagnosed with cancer, (2) be 18 years or older, (3) self-identify as an LGBTQI + person, and (4) currently live in the USA. Participants who did not speak and read English or Spanish were excluded from the study. For the secondary analysis, we only included participants that reported being diagnosed with anal or colorectal cancer.

Four hundred eleven participants with a previous colorectal or anal cancer diagnosis started the survey. However, only 295 answered the quantitative variable of interest (number of days with poor mental health). We analyzed quantitative differences in clinical, demographic, psychosocial, and patient satisfaction variables among the total sample (n = 411) and the sub-sample with the variable of interest (n = 295). The total and sub-samples showed consistent data distribution and significance (see Supplementary Tables 2 and 3). Thus, we assumed that data was missing at random and continued the analysis (quantitative and qualitative) with the 295-participant sub-sample.

Measurement

Descriptive data

Demographic information included the participants’ age, sex assigned at birth, gender, sexual orientation, race, ethnicity, employment, area of residence, disability, education, and health insurance. The following clinical data was collected: type of cancer, stage of cancer (i.e., active treatment, remission), having cancer in multiple organs, and receiving more than one cancer diagnosis. Patient satisfaction was assessed using a five-point Likert scale and included questions about the level of satisfaction with the cancer treatment experience (from very satisfied to very dissatisfied) and receiving culturally competent care by cancer providers, nurses, and healthcare staff (from all to none).

Quantitative data

Mental health was assessed with the question, “Now, think about your mental health, which includes stress, depression, and problems with emotions. In the past 30 days, for how many days was your mental health poor?” In addition, the participants were asked if they had received resources related to mental health for LGBTQI + individuals (yes/no) and how valuable would be receiving those resources (from very valuable to not very valuable).

Social health was assessed using Likert-type questions on the participants’ current number of close friends (from none to 7 or more), their perceived level of support before cancer diagnosis (from very strong to very weak), and changes to the strength of their social network after cancer diagnosis (from social network being much stronger to much weaker). Additionally, the survey included a question about whether the participants had a primary support person (yes/no), and if answered “yes,” who this support person was (e.g., current partner, former partner, family member, etc.) and their comfort level bringing the support person to healthcare visits (from very comfortable to very uncomfortable).

Qualitative data

To qualitatively examine the impact cancer had on psychosocial health, the survey included four open-ended questions: (1) How has cancer changed the way you view yourself?; (2) how has cancer changed the way you view yourself as an LGBTQI + person?; (3) how has cancer changed your intimate relationships with others?; and (4) is there anything else you would like to share with us about how cancer has impacted you?

Data analyses

Quantitative data

We used descriptive statistics to assess normality and examine demographic, clinical, patient satisfaction, and psychosocial variables. Group differences were assessed using Mann–Whitney U and chi-square tests, depending on the level of measurement. A series of multiple regression models were used to determine contributors to poor mental health days. Based on findings from our previous systematic review of the literature on the psychosocial health of SGM cancer survivors [12], we ran independent models for demographic (model 1), clinical (model 2), and psychosocial (model 3) factors. A fourth model was run with patient satisfaction variables as previous literature on SGM populations with colorectal cancer found these factors influence psychosocial health [16]. Variables that significantly contributed to poor mental health in models 1–4 were included in the final model (model 5). Age and education were forced in the final model since it is already well established that these factors influence the mental health of SGM cancer survivors. Analyses were conducted in RStudio version 2023.09.1 + 494. Alpha was set at 0.05.

Qualitative data

For the qualitative data analysis, we followed Brown and Clarke’s [22] process for thematic analysis: (1) two coders (OFR-KT) read all the qualitative responses to become familiar with the data; (2) for each type of cancer (anal or colorectal) and SGM group (SMM, SMW, and TGNB people), the coders independently created inductive, nominal codes in Excel; (3) the emerging codes were grouped into potential themes by each coder independently; (4) the two coders then met to discuss, review, define, and name the themes; (5) finally, all authors revised and agreed on the final themes. In Supplementary Table 4, we acknowledge our positionality and background, which guided a reflection and dialog about our privileges and biases and how they influenced the qualitative data analysis.

Data integration

Finally, we integrated the quantitative and qualitative findings at the interpretation and reporting stage [23]. To identify patterns and complement each type of data, we conducted an integration through the narrative, weaving approach, where we present the quantitative and qualitative data together on a concept-by-concept basis [19, 23]. To do this, we first consolidated each data type individually, then merged the findings, and iteratively reworked the concepts until all dimensions were combined following Guetterman et al. [24] recommendations.

Results

Descriptive data

The median age of the participants was 60 years. As shown in Table 1, most were males assigned at birth (79.7%) and identified as gay (73.5%) cisgender men (80.3%). The majority reported White/European American race (83.7%), non-Hispanic ethnicity (90.8%), living in urban or suburban areas (83.4%), at least a college or vocational degree (71.5%), having private health insurance (52.9%), and not having a disability (60.7%). Although few participants reported a current diagnosis of cancer (20.7%) or cancer in multiple organs (36.6%), more than half of the sample had received a cancer diagnosis twice or more (54.9%). Importantly, most of the participants indicated being somewhat or very satisfied with their care (89.8%) and receiving culturally competent care from all or most of their cancer care providers (89.8%), nurses (91.2%), and healthcare staff (84.4%). Among demographic, clinical, and patient satisfaction characteristics, only sex, gender, and sexual orientation were significantly different between anal and colorectal SGM cancer survivors (see Table 1).

Table 1 Differences in sociodemographic, clinical, psychosocial, and patient satisfaction variables between sexual and gender minority people with anal and colorectal cancer
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Overview of quantitative and qualitative findings before data integration

The median number of days with poor mental health was five. As displayed in Table 1, 65.4% of the participants did not receive mental health resources for LGBTQI + individuals, but almost half of the sample (46.1%) thought this information would have been very valuable. The final model explained 15.8% of the variance (see Table 2). A higher number of days with poor mental health were associated with a current diagnosis of cancer, having a disability, and having fewer close friends.

Table 2 Factors associated with number of days with poor mental health among sexual and gender minority populations with anal and colorectal cancer
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As displayed in Table 3, two final themes emerged. The first theme, interactions with others after cancer, describes how the illness made participants more aware of and influenced their interpersonal relationships. The second theme, cancer’s influence on physical and mental health, shows the positive (e.g., increased self-confidence and healthy lifestyles) and negative (e.g., feelings of shame and regret) consequences of cancer and its treatment on the participants’ physical and mental well-being.

Table 3 Themes, categories, subcategories, and supporting quotes of the qualitative data analysis
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Data integration

Three concepts emerged from the data integration. First, there were positive and negative psychological effects attributed to cancer as described by the participants (e.g., feeling “stronger” and “pushing through” but also “angry” and “not liking what [they] see in the mirror”). Second, cancer required the participants to make social adaptations with their friends, partners, and family members, such as prioritizing fewer and strong connections over multiple but poor-quality relationships. Finally, several factors affected the psychosocial health of the participants during and after cancer, particularly interactions with providers (e.g., poor communication about the long-term effects of cancer treatment), comorbidities, and lack of knowledge to manage treatment side effects.

Psychological effects of cancer

Only 31.9% of the participants received mental health resources tailored for LGBTQI + individuals, which may explain some of the detrimental effects on SGM survivors’ self-esteem. Many of these negative effects were associated with body image due to cancer treatment. SGM participants reported feeling “broken,” “unlovable,” “destroyed,” and “no longer… a whole.” In addition, cancer generated symptoms of “anxiety,” “depression,” “fear,” “anger,” “trauma,” and among SMM, fear of HPV reinfection and cancer recurrence.

Interestingly, 79.7% of the participants considered tailored LGBTQI + mental health resources valuable. Still, since most did not receive it, they developed their own coping mechanisms to make sense of their diagnosis and support other LGBTQI + cancer survivors. Specifically, they expressed having a positive mindset, such as “humor,” “pushing through,” “remaining positive,” and an overall “fuck you cancer!” attitude. Participants became more acutely aware of the unique needs of LGBTQI + individuals, and for SMM and SMW, this sparked a “calling” to advocate for others, which manifested as promoting screening, mentoring younger generations, and being a spokesperson for LGBTQI + cancer survivors. Other participants, particularly SMW and TGNB individuals, reported disengagement with the community because they did not feel supported, and instead, felt ostracized due to the impact of cancer treatment on their health and well-being.

A higher number of days with poor mental health were associated with a current diagnosis of cancer (\(\beta\) = 0.32, 95% CI = 0.04–0.60). SGM survivors expressed that cancer stimulated an inner dialog about mortality. In particular, feelings of limited time and looming death fostered an awareness of mortality, which was more pronounced during active cancer. Consequently, cancer made those in remission see “every day as a gift” and feel that they had a “second opportunity” and overall appreciation and gratitude for being alive. The appreciation for life also encouraged SGM individuals to “stay healthy” and be more active in caring for their physical and mental health. Physically, participants mentioned improving their diet, exercising more, and taking proactive screening measures. Mentally, the participants felt “stronger” and a sense of pride for being a “survivor.” They were also more confident, showed more love and compassion for themselves, and cared less about what others thought.

Social adaptations

The strength of support before cancer diagnosis was strong for 76.6% of the sample and did not change (45.4%) or was stronger (43.1%) after cancer diagnosis for most participants, consistent with the qualitative data, which shows that cancer deepened and strengthened the interpersonal relationships of the participants across all SGM groups. Sometimes, this was at the cost of casual or negative relationships. They had fewer but stronger relationships, also consistent with the quantitative findings, where only 25.5% of the participants reported five or more close friends after cancer diagnosis. Despite this, a few SGM survivors had a weak support network after cancer (10.5%), which may be due to negative experiences with friends and family. In particular, SMM and TGNB participants felt withdrawn, lonely, and isolated—feelings exacerbated during the COVID-19 pandemic. Having fewer close friends was associated with more mentally unhealthy days (\(\beta\) = 0.55, 95% CI = 0.26–0.84).

Importantly, 67.1% of the participants mentioned their partner was their support person during their cancer journey, and even though SMM and SMW felt closer to their partners after diagnosis, some felt guilty for the burden cancer had placed on their partner. Importantly, TGNB participants were the only group who expressed that cancer ended their romantic relationships. All in all, cancer and its treatment had detrimental effects on the intimacy of the participants regardless of SOGI and cancer type. Physically, sex was perceived as “painful,” “undesirable,” or challenging compared to before cancer. Psychologically, cancer negatively affected their self-esteem and made them feel “no longer desirable” and “gross.” Although negative self-perceptions affected both single individuals and those in long-term relationships, those who were single seemed to have much lower self-esteem and a general lack of hope. Many of these individuals took an avoidant approach and stated they could or would not have sex or intimate relationships ever again. SMM individuals, notably those diagnosed with anal cancer, stated that their fear of infecting future partners with HPV and potentially “caus[ing] anyone else cancer” was a reason for their disengagement in romantic relationships. Furthermore, SMM at older ages used their age to justify loss of intimacy.

Factors affecting psychosocial health during and after cancer

Many SGM survivors experienced stigma related to their cancer diagnosis and queer identity. For some, there was already a lot of shame and stigma before diagnosis, and cancer did not change that. Internalized stigma made the cancer journey more difficult, and experiences with providers exacerbated these feelings. For instance, SMM cancer survivors were disappointed by their healthcare providers’ lack of knowledge regarding LGBTQI + health and infection-related cancers. They also wished providers would have been more upfront about the impact of cancer treatment on their sexual functioning. TGNB participants expressed that their identities were “judged,” reduced to their sexuality, and wished they were seen as “multi-faceted” and holistic beings. Despite this, most participants referred that at least half of their cancer providers, nurses, and healthcare staff provided culturally competent care. Similarly, 89.9% felt satisfied with their care, possibly due to some positive experiences with providers, particularly communication about their needs and treatment expectations.

The participants also reported other health conditions and comorbidities that impacted their cancer journey to different extents. For some, their comorbidities (e.g., cardiopulmonary problems) were their main concern, and cancer was a “minor inconvenience.” In contrast, others felt cancer was “tougher” than any other health condition they had ever experienced. Similarly, some participants living with HIV felt cancer had affected them to a lower degree because they had already developed skills to face life-threatening conditions. However, participants with concurrent cancer and HIV diagnoses were worried about the impact of cancer treatment (e.g., surgery and radiotherapy) on their immune systems.

Although most of the participants were middle-aged or young-old adults, the participants reported feeling “older,” “weaker,” “tired,” and “physically and behaviorally damaged.” Furthermore, SGM cancer survivors described the long-term impact of cancer and associated treatments on their general health. They felt unprepared and uneducated about the likelihood of developing these side effects and how to handle them. For instance, participants experienced symptoms such as neuropathy, pain, diarrhea, memory and sleep problems, and sexual side effects even after finishing treatment, which may be why the quantitative results indicated that having a disability (e.g., sensory, mobility, mental, cognitive, or developmental) was also associated with more poor mental health days (\(\beta\) = 0.42, 95% CI = 0.19–0.65).

Discussion

GI cancers and their treatment have a profound effect on the psychosocial health of SGM individuals. Both anal and colorectal cancer survivors reported a median of 5.0 days with poor mental health in the last month, which is 0.9 and 0.7 days more than the average for the US population in 2020 and 2021, respectively [25]. Participants expressed feelings of depression, anxiety, anger, and trauma due to changes in their bodies, which is consistent with the existing literature [13, 14, 16]. Notably, participants were interested in improving their mental health. For instance, almost 80% of the participants would have valued receiving tailored LGBTQI + mental health resources. However, less than a third received them. Despite this, the majority of those sampled expressed satisfaction with their care and perceived most of their providers as culturally sensitive. But again, through qualitative inquiry, some participants expressed that healthcare providers poorly communicated the side effects of cancer treatment and lacked training on the healthcare needs of LGBTQI + individuals. All in all, our findings evidence a mismatch between perceived and actual provision of cultural care.

The trauma-informed care perspective proposes that SGM individuals experience trauma throughout the cancer care continuum [26]. In this analysis, SGM cancer survivors mentioned that previous experiences of discrimination increased their vulnerability to poor psychosocial health during the cancer trajectory. Specifically, we found that traumatic experiences—lived experiences and historical trauma (e.g., stigma against SGM groups during the HIV epidemic)—before diagnosis made participants anticipate and experience poor healthcare quality during their cancer journey. Educational programs for healthcare providers and staff should consider historical and ongoing stigma when developing, implementing, and assessing culturally sensitive training programs; this will allow the provision of high-quality, trauma-informed care.

Previous research has found that SMW breast cancer survivors are more likely to engage in active coping strategies than their heterosexual cisgender counterparts [27,28,29]. Although our study did not include a heterosexual cisgender comparison group and most of our participants were SMM, they also expressed a positive mindset (e.g., humor), improved their lifestyles, and “pushed through” cancer, indicating that other SGM groups also engage in active coping strategies, even despite the lack of targeted mental health resources. Intervention studies aimed at improving the psychosocial health of SGM anal and colorectal cancer survivors should consider this protective factor when treating the late and long-term effects of cancer.

The participants also mentioned being more outspoken about the needs of members of their community and, in many cases, advocated for cancer prevention and screening among their friends, suggesting that peer support interventions may improve the psychosocial health of SGM cancer survivors. To the best of our knowledge, studies analyzing peer-to-peer support programs among this population are lacking, even though previous research has shown that peer support interventions are beneficial for the mental health and quality of life of cancer survivors [30] and SGM populations [31].

Differences were noted between SGM subgroups based on cancer type. Consistent with studies suggesting that the incidence of anal cancer is higher among SMM [32], our findings show that anal cancer survivors were more likely to be males assigned at birth and identify as gay cisgender men, compared to SMW and TGNB participants. Anal cancer survivors also had a weaker social network than colorectal survivors before diagnosis and mentioned feelings of shame and regret due to their diagnosis. Professional organizations and advocacy groups have proposed that the stigma anal cancer survivors face may be due to intersectional stigmas associated with the anus, sexual practices involving receptive anal intercourse, and risk factors for anal cancer, particularly HPV infection and multiple sexual partners [33,34,35]. All in all, our findings indicate that SGM anal cancer survivors may be at a higher risk of poorer psychosocial health. Future research is necessary to expand on the impact of these subgroups and propose interventions to address their psychosocial needs.

SGM survivors had mixed feelings about the impact of cancer on their romantic relationships. Some felt that their cancer diagnosis made them closer to their partner, but others felt it placed a burden on them. Furthermore, the impact of cancer on the sexual functioning of the participants created additional barriers to intimacy, which is similar to previous research findings [36, 37]. Nonetheless, we also identified that single SGM survivors lacked the confidence to pursue romantic relationships; they seemed to have lower self-esteem and a general lack of hope. In this sense, and consistent with the general cancer literature, having a partner may protect against worse cancer outcomes [38]. Interventions for improving self-esteem and helping those interested in pursuing romantic relationships are necessary to improve the overall psychosocial health of SGM people with cancer.

Through qualitative inquiry, sexual minorities were the only group that expressed the impact of cancer on their physical health and queer identity. SMM also shared their fear of cancer recurrence and internalized minority stress. Finally, TGNB participants described the detrimental impact cancer had on their family and romantic relationships, most of which ended after the diagnosis. These findings are similar to those of previous studies [8, 39, 40] but also expand on the unique psychosocial needs of SGM GI cancer survivors. In particular, participants from our study expressed feelings of internalized stigma due to being diagnosed with an infectious-related cancer and the detrimental effects of cancer on their romantic relationships. It is worth noting that although these subcategories emerged for those subgroups only, other SGM subgroups may have similar experiences. Nevertheless, these SGM subgroups may perceive these issues as a priority for their psychosocial well-being; as such, considering the unique needs of SGM subgroups is essential to improve patient-centered care and precision health.

Our participants experienced neuropsychological symptoms broadly studied in the cancer literature but poorly understood among SGM cancer survivors, such as pain, sleeping problems, and cognitive dysfunction. These health domains are essential for daily life activities (e.g., cooking and taking medications) [41], and their disruption can potentially decrease cancer survivorship, job reintegration, and overall quality of life [42,43,44]. Furthermore, these long-term symptoms are associated with cognitive and mental disabilities, a significant predictor of poor mental health. Research studies analyzing the impact of cancer and its treatment on the neuropsychological health of SGM cancer survivors are urgently needed.

Study limitations

The external validity of the findings is limited by the non-probability sample. Furthermore, construct validity was limited by the use of open-ended questions which did not allow further probing on emerging themes and the use of single item measures for many variables. Due to the limitations in the length of the survey, many clinically important measures were not included in the dataset. Despite this, we conducted a rigorous qualitative and quantitative analysis, followed by a widely used data integration technique, improving the overall quality of our study. We compared findings among SGM subgroups with different types of cancer, which is rare in the existing literature. Finally, we included a significant sample of GI cancer survivors, particularly anal survivors, which has been previously reported as a hard group to recruit for research studies.

Conclusion

GI cancers affect the psychosocial health of SGM individuals. Older age, type of cancer, being unpartnered, having a disability, and fewer close friends may increase the risk of poorer psychosocial health. To cope with their diagnosis, SGM survivors developed unique strategies and advocated for the SGM community. Developing and implementing psychosocial interventions aimed at restoring the self-esteem and social support is a priority for improving the psychosocial well-being of SGM GI cancer survivors. These interventions should consider peer-to-peer mechanisms, the intersecting stigmas affecting anal cancer survivors, and the social healthcare needs of TGNB individuals. Finally, training for healthcare professionals should include education on historical and ongoing trauma, and measures and mechanisms should be developed to assess both the perceived and actual provision of culturally responsive care.