Satisfaction with care, general health, and mental health among Sexual and Gender Minority (SGM) cancer survivors: Results of the OUT National Cancer Survey

Abstract

Background:

Few studies have attempted to characterize the cancer care experiences and outcomes of sexual and gender minority (SGM) patients with cancer, despite indications that this population experiences disparities across the cancer continuum. The current study used descriptive and exploratory methods to assess factors related to SGM cancer patients’ satisfaction with cancer care and self-reported physical and mental health.

Methods:

We designed a cross-sectional self-report online survey and recruited 3,750 SGM cancer patient participants (mixed cancers; 85.6% White; 57% gay, 24% lesbian, 6.7% bisexual, 6.2% transgender/gender non-binary) using social media posts, partner organizations, and paid advertisements. We analyzed data using descriptive approaches and exploratory multivariate logistic regression models.

Results:

Overall 70.6% of participants reported feeling satisfied with the cancer care they received, 70% rated their physical health as very good or excellent, and 46% reported experiencing less than 5 days of poor mental health in the last month. In models including all participants, complete cases, and Black, Indigenous, and People of Color (BIPOC), satisfaction with care was consistently associated with receiving treatment in an SGM welcoming environment. Physical health was consistently associated with having strong social support after cancer. Mental health was consistently associated with feeling safe disclosing SGM identities.

Conclusions:

SGM cancer patients treated in SGM-welcoming environments were over 6 times more likely to be satisfied with the care they received than those treated in non-welcoming environments; this and other modifiable factors could be the target of further study and intervention.

Precis:

We conducted a survey of 3,750 sexual and gender minority (SGM) individuals with a history of cancer to assess factors associated with their satisfaction with cancer care and self-reported physical and mental health. SGM cancer patients treated in SGM-welcoming environments were over 6 times more likely to be satisfied with the care they received than those treated in non-welcoming environments; this and other modifiable factors could be the target of further study and intervention.

Introduction

Approximately 124,000 sexual and gender minorities (SGM) adults are diagnosed with cancer in the US annually.^1,2 The term SGM encompasses lesbian, gay, bisexual, transgender, queer, intersex, asexual, and other individuals who are neither heterosexual nor cisgender (H/C). To date, there has been limited research on the cancer care experiences of SGM patients.^3,4 National cancer registries and oncology practices do not routinely collect information on sexual orientation and gender identity (SOGI), making it difficult for scientists and clinicians to assess the specific cancer-related needs of SGM patients.^5,6 In addition, SGM communities comprise individuals from every racial and ethnic group, socioeconomic status, level of ability/disability, and linguistic and cultural background.⁷ Intersectionality, or attending to the impact of multiple intersecting minoritized identities, is therefore particularly important to consider when assessing the needs and experiences of SGM cancer patients, and necessitates innovative and inclusive approaches to sampling.⁸

Cancer Disparities in SGM Persons

Despite the lack of routine SOGI data collection, existing studies highlight that SGM populations experience disparities at every stage of the cancer continuum. With respect to cancer risk and prevention, sexual minority women and men and gender minority persons have higher rates of tobacco and alcohol use than their H/C counterparts.^9,10 With respect to outcomes following cancer, SGM people in general are less likely to have adequate health insurance,^11,12 more likely to have experienced discrimination based on their gender identity and/or sexual orientation,¹³ and more likely to be alienated from their families of origin than H/C people,¹⁴ which may affect their psychological distress and quality of life in the context of cancer. While some studies have shown no difference between SGM and H/C cancer patients, some have shown a higher number of days of poor mental health per month and poorer health-related quality of life among SGM patients after a cancer diagnosis.^15,16

Cancer Care Experiences as a Driver of SGM Disparities

Emerging evidence indicates that SGM cancer patients may be less satisfied with the care they receive than H/C cancer patients.¹⁷ This disparity may be due in part to a lack of knowledge, skill, and overall competence on the part of cancer care providers to work with SGM populations.¹⁸ The majority of oncologists report that they lack sufficient knowledge to treat SGM patients competently, and this lack of knowledge is especially pronounced for gender minority and transgender patients.^19,20 In addition, both patient and physician attitudes can impact the quality of care received by SGM cancer patients. As a consequence of previous experiences of stigma or discrimination, SGM patients may report anxiety and mistrust when accessing cancer care services, and may delay seeking care or not adhere to treatment recommendations.^21,22 Cancer care providers, in turn, may hold biased or stigmatizing beliefs about SGM patients, or their communication and behavior toward SGM patients may indicate an implicit bias.²³ These issues are magnified in the absence of environmental indicators that a practice welcomes SGM patients.^24,25 More research is needed to understand the myriad factors that influence SGM patients’ experiences during cancer care.

Study Objectives

To address this gap, we conducted a large, nationwide, online survey of SGM people with personal experiences of cancer.²⁶ Our objectives were to descriptively assess the experiences, mental health, and physical health of SGM cancer patients, and to explore modifiable factors that might predict higher satisfaction with cancer care and better mental and physical health.

Methods

Survey

The survey instrument used in this study consisted of 120 questions, designed to be answered online in either English or Spanish. Items were both quantitative and qualitative and took approximately 30 minutes to complete. We included items from our prior 2007 SGM survivor survey and items from a SGM cancer survivor survey from Australia.²⁷ We also assembled an advisory group including SGM survivors, providers, and experts in the area, with a focus on racial and ethnic diversity. This advisory group provided input on survey design and outreach methodology. The protocol and survey were approved by the Western IRB. The study was designed from the outset to be primarily descriptive and exploratory. Participation was voluntary and anonymous.

Recruitment

The survey was accessible via a web link from September, 2020 to March, 2021. To ensure sufficient diversity of the sample, we asked the Center for Black Equity to help lead recruitment. We asked the organizations on our mailing list to be promotional partners; the 160 organizations who agreed to participate shared the survey approximately 305 times according to Sprout Social and reached approximately 6,219,744 followers. We also reached out to local Black and Brown pride coordinators (31 identified; 10 shared the survey 22 times and reached 62,437 followers), Black and Brown queer Greek organizations (46 identified from BlackOrgs.net; 14 shared the survey 19 times and reached 16,070 followers), Southern Equality Partners (26 identified from southernequality.org; 11 shared the survey 19 times and reached 139,576 followers), and cancer centers (71 identified; an unknown number shared the survey 7 times and reached 171,320 followers). All organizations were listed on the survey acknowledgements. To bolster our recruitment, we engaged a specialist in tailored media buys and invested $15,000 in static ad purchases for the campaign. and another $15,000 in ads with keywords designed to engage racial minority communities. Because of these diverse sampling approaches, it is not possible to calculate an exact denominator of potential participants reached, nor a survey response rate.

Participants

In order to be eligible for the survey, participants needed to: 1) have been diagnosed with cancer (any type, any stage, any time since diagnosis); 2) be 18 years of age or older; 3) self-identify as lesbian, gay, bisexual, transgender, queer, intersex, or another sexual or gender minority identity, 3) currently live in the US. No incentive was offered to participants for completing the survey.

Topics Assessed

Demographics and clinical variables.

Demographic items assessed gender identity (categorical), intersex status (binary), sexual orientation (categorical), race (categorical), Hispanic/Latino ethnicity (binary), age (continuous), disability status (binary), urban/suburban vs. rural residence (binary), whether the participant had insurance (binary), and education level (categorical). Additional items assessed participants’ cancer experience, asking about primary site of most recent cancer diagnosis (categorical), age at time of most recent cancer diagnosis (continuous), and whether the participant currently had cancer (binary).

Healthcare-related variables.

Individual items assessed whether the notification of the participant’s cancer diagnosis was delivered respectfully (binary), whether the cancer care environment where the participant received treatment was SGM welcoming (binary), whether the participant felt any of their cancer care providers, nurses, or support staff members were culturally competent to treat SGM patients (three binary items), and whether there were visible indicators that the cancer environment was SGM welcoming (binary).

Identity-related variables.

Individual items assessed whether the participant is identified in public as being SGM (binary), whether they feel safe disclosing their SGM identity in general (binary), whether any members of their cancer care team were aware of their SGM identity (binary), whether they feel safe disclosing their SGM identity to their cancer care team (binary), and whether their cancer care environment was more welcoming after the participant disclosed their SGM identity (binary).

Support-related variables.

Individual items assessed whether the participant felt they had a strong social support network before cancer diagnosis (binary), whether they had primary support people during cancer treatment (binary), whether they felt they had a strong social support network after cancer treatment (binary), and whether they accessed cancer survivorship support after they finished treatment (e.g., attended a support group, sought counseling; binary).

Outcome variables.

The survey assessed three relevant cancer treatment outcomes using individual items. First, participants reported whether they were satisfied with their overall cancer care experience, dichotomized as “very satisfied” (coded as 1) versus less than “very satisfied” (coded as 0). Second, participants on their general health at the time they completed the survey, dichotomized as “good,” “very good,” or “excellent” health (coded as 1) versus “fair” or “poor” health (coded as 0). Finally, participants reported on their mental health at the time they completed the survey, as a continuous number of days out of the last 30 days where they experienced “poor mental health,” defined as “stress, depression, and problems with emotions.” We also dichotomized this variable using a median split as less than 5 days of poor mental health (coded as 1) versus 5 or more days of poor mental health (coded as 0).

Data analysis

The aim of this study was to provide descriptive and exploratory statistics in order to promote future research. All items on the survey were optional, and participants could complete the survey while leaving individual items blank. Therefore, the number of participants who completed each item varied. We also removed a total of 17 cases that were recorded between 12/7/2020 to 12/8/2020, because during that period the survey was attacked by bots who created a series of fake responses.

We examined demographic, identity, healthcare, support, and outcome variables descriptively, using percentages and summary statistics (means, standard deviations) where appropriate. We also examined associations between demographic, identity, healthcare, and support variables with the outcome variables using chi-square analyses.

To provide an initial perspective on associations between predictor and outcome variables, we identified a subset of demographic, identity, healthcare, and support variables associated with treatment satisfaction, general health, and days of distress using forward stepwise conditional logistic regression (and linear regression for continuous days of distress). The criterion for entering the model was a significance level of p<0.05, and the criterion for retention in the model was a significance level of p<0.10. We observed the classification matrix for the final models to assess model fit and calculated p values and 95% confidence intervals for each factor retained in the models. Given the high rate of missing data, we also conducted complete case analyses using the same modeling approach with a sample consisting only of those who had completed all relevant survey items. To address intersectionality and ensure the experiences of those with multiple intersecting minoritized identities were centered, we examined differences between the subgroup of participants who were Black, Indigenous, and People of Color (BIPOC) by using the same modeling approach with a sample consisting only of BIPOC respondents. All analyses were conducted with SAS.

Results

Demographic and clinical characteristics

A total of 3,767 participants began the survey; 3,750 were identified as human respondents and not bots; and 1,283 provided complete data on all survey items. Of the 3,750 adult SGM cancer survivors who were included in descriptive analyses, participants self-identified as male (61.6%), female (31.7%), genderqueer/gender non-binary (3.9%), transgender (1.6%), and “another gender identity” (0.7%). In addition, 1.4% identified as intersex. Commensurate with the gender identity breakdown, the majority of participants (57.2%) identified as gay; 24.2% identified as lesbian, 8.9% identified as more than one orientation, and 6.7% identified as either bisexual or pansexual. The majority (85.6%) identified their race as White with smaller percentages of Black (3.5%), American Indian/Alaskan Native (2.9%), and Asian (1.5%) participants; 6.0% identified as Hispanic/Latino. The average age of participants was 59 (range from 18-91 years), and the average age diagnosed with cancer was 50.8 years (range from 1-82 years). Most participants lived in suburban (46.3%) or urban (38.4%) areas, had insurance (97.3%), and had a college degree or higher (79.6%).

Prostate cancer was the most commonly reported cancer type (14.8%), followed by breast cancer (13.3%), basal, squamous cell, or melanoma skin cancers (11.7%), non-Hodgkin lymphoma (6.6%), colorectal cancer (6.3%), and anal cancer (5%). See Table 1 for additional demographic and clinical participant characteristics.

Table 1:

Demographic and clinical characteristics of the current sample (N=3,750)

Variable	n	%
Gender Identity
Female	1,195	31.7
Genderqueer / Gender Non-binary	145	3.9
Male	2,304	61.6
Transgender	62	1.6
Another gender identity	26	0.7
Prefer not to share	18	0.5
Intersex	62	1.4
Sexual Orientation
Asexual spectrum	24	0.6
Bisexual / Pansexual	238	6.7
Gay	2,137	57.2
Lesbian	905	24.2
Multiple orientations	336	8.9
Queer	78	2.1
Straight	12	0.3
Another orientation	20	0.5
Hispanic/Latino Ethnicity	188	6.0
Race
American Indian / Alaskan Native	95	2.9
Asian / Asian American / Pacific Islander	49	1.5
Biracial / Multiracial	90	2.8
Black / African American	132	3.5
White / European American	2,695	85.6
Another racial identity	96	3.0
Prefer not to share	49	1.5
Missing	544	14.5
Urban vs. Rural
Suburban	1,088	46.3
Urban	905	38.4
Rural or Remote	357	15.2
Prefer not to answer	10	0.2
Missing	1,390	37.0
Has Insurance
Yes	2,284	97.3
No	62	2.6
Missing	1,407	37.4
Highest Level of Education
College or Graduate school	1,845	79.6
At most some college	486	20.8
Prefer not to share	7	0.3
Missing	1,412	37.7
Cancer type
Anal	186	5
Bladder	98	2.6
Breast	500	13.3
Cervical	60	1.6
Colorectal	237	6.3
Head and neck	156	4.2
Hodgkin's Lymphoma	85	2.3
Kidney	102	2.7
Leukemia	100	2.7
Liver	38	1
Lung	141	3.8
Non-hodgkin lymphoma	248	6.6
Ovarian	100	2.7
Pancreatic	30	0.8
Prostate	555	14.8
Skin cancer	440	11.7
Thyroid	97	2.6
Other	575	15.3
Variable (n complete)	Mean (range)	s.d.
Age (n=2,363)	59.0 (18-91)	11.08
Age Diagnosed with Cancer (n=2,946)	50.8 (1-82)	12.8

We compared the demographics of those 1,283 participants who provided complete data on all survey questions to those participants who did not provide complete data. Those who provided complete data were less likely to be Hispanic/Latino or bisexual and more likely to have a college education or greater.

Healthcare variables

See Table 2 for completion rates for all items included in analyses. A total of 68.7% of the sample reported that their cancer diagnosis was delivered respectfully. The majority (74.9%) said that the environment where they received care was welcoming to SGM patients, while 25.1% said it was unwelcoming or neither welcoming nor unwelcoming. However, only 10.5% said there was a visible indicator that the cancer care environment was welcoming to SGM patients, while the majority (89.5%) said that there was no such indicator. Further, 51.2% said their cancer care providers were culturally competent to treat SGM patients, 54.4% said their nurses were, and 51.6% said other healthcare staff were.

Table 2.

Predictor and outcome variables (total N=3,750; missing data per item are presented as a % of the total sample, while % of responses are presented based on the valid sample after missing data were removed)

Healthcare Variables	Yes, n (valid %)	No, n (valid %)	Missing, n (%)
Cancer diagnosis delivered respectfully	2,003 (68.7)	912 (31.3)	835 (22.3)
Cancer care environment SGM welcoming	2,112 (74.9)	707 (25.1)	931 (24.8)
Cancer care providers were SGM competent	1,433 (48.8)	1,368 (51.2)	949 (25.3)
Nurses were SGM competent	1,520 (54.5)	1,273 (45.6)	957 (25.5)
Staff were SGM competent	1,432 (51.6)	1,342 (48.4)	976 (26.0)
Indicators that environment was SGM welcoming	290 (10.5)	2,480 (89.5)	980 (26.1)
Identity Variables	Yes, n (valid %)	No, n (valid %)	Missing, n (%)
Identified in public as being SGM	1,063 (38.8)	1,679 (61.2)	1,008 (26.9)
Feel safe disclosing SGM identity in general	1,287 (47.1)	1,448 (52.9)	1,015 (27.1)
Cancer care team aware of SGM identity	2,293 (79.7)	583 (20.3)	874 (23.3)
Feel safe disclosing SGM identity to cancer care team	1,966 (86.7)	295 (13.3)	1,498 (39.7)
Environment welcoming after disclosing SGM identity to cancer care team	2,151 (95.0)	113 (5.0)	1,486 (39.6)
Social Support Variables	Yes, n (valid %)	No, n (valid %)	Missing, n (%)
Strong support before cancer	1,174 (43.2)	1,542 (56.8)	1,034 (27.6)
Primary support people during cancer treatment	2,399 (88.6)	308 (11.4)	1,043 (27.8)
Strong support after cancer	2,376 (87.8)	335 (12.4)	1,039 (27.7)
Accessed cancer survivorship support	751 (28.0)	1,930 (72.5)	1,069 (28.5)
Outcome Variable	Yes, n (valid %)	No, n (valid %)	Missing, n (%)
Satisfied with cancer care experience	1,955 (70.6)	814 (29.4)	981 (26.2)
Current health is good or better	1,693 (70.0)	724 (30.0)	1,333 (35.5)
No days of distress in the past month	735 (31.3)	1,610 (68.7)	1,405 (37.5)

Identity variables

A total of 38.8% of participants said that they felt they were typically seen as part of the SGM community when in public, and 47.1% of respondents said they felt very safe disclosing their SGM identity in general. The majority (79.7%) said that their cancer care team was aware of their SGM identity, 96.1% said they felt safe disclosing their SGM identity to their care team, and 95% said their cancer care environment remained welcoming or felt more welcoming after they disclosed their SGM identity.

Support variables

In terms of support, 43.2% of people said they had very strong social support network before their cancer diagnosis; 87.8% said that cancer did not change the strength of their support network or made it stronger. Another 88.6% said they had primary support people (partners, caregivers) with them during cancer treatment, but only 28% of participants said they accessed cancer survivorship support (formal groups, counseling) after treatment.

Outcome variables

In terms of outcomes, 70.6% of participants reported they were somewhat or very satisfied with their cancer care experience. A total of 70% said their current health was good or better (36% very good or excellent; 34% good). The sample reported a mean of 9 days of poor mental health over the past month (standard deviation=9.88) and a median of 5 days; 46% said they experienced less than 5 days of poor mental health.

Associations between healthcare, identity and support variables with outcomes

See Figures 1-3 for adjusted odds ratios (AOR) and 95% confidence intervals (CI). See Supplemental Tables 1-3 for a full list of variables and Wald Chi Square associations with outcomes. After adjusting for demographic and clinical characteristics, seven factors were associated with SGM patients’ satisfaction with their cancer care experience: having their cancer diagnosis delivered respectfully, receiving care in an SGM welcoming environment, feeling their cancer care providers were SGM competent, feeling safe disclosing their SGM identity to their cancer care team, feeling that their cancer care environment was welcoming after they disclosed their SGM identity, having a strong support network before cancer, and after cancer (Figure 1).

Figure 1.

Variables predicting satisfaction with care (valid n=1,746)

* Also significant in models involving participants who provided complete survey data

^ Also significant in models involving only BIPOC participants

Figure 3.

Variables predicting <5 days of distress (valid n=1,692)

* Also significant in models involving participants who provided complete survey data

After adjusting for demographic and clinical characteristics, four factors were associated with SGM patients’ self-rated health after cancer: having their cancer diagnosis delivered respectfully, receiving care in an SGM welcoming environment, having a strong support network after cancer, and having accessed cancer survivorship support (Figure 2).

Figure 2.

Variables predicting current health (valid n=1,684)

* Also significant in models involving participants who provided complete survey data

^ Also significant in models involving only BIPOC participants

After adjusting for demographic and clinical characteristics in multivariate logistic regression, five factors were associated with SGM patients’ report of having less than 5 days of poor mental health after cancer: receiving care in an SGM welcoming environment, feeling safe disclosing their SGM identity in general, having primary support during cancer treatment, having a strong support network before cancer, and after cancer (Figure 3). In a multivariate linear regression, three factors were associated with a lower number of continuously-measures days of poor mental health over the past month: having primary support during cancer treatment (F=5.13, p=0.02), and having a strong support network before cancer (F=5.83, p=0.02) and after cancer (F=9.37, p=0.002).

Associations among those who completed all survey items

Supplemental Tables 4-6 for a full list of variables and Wald Chi Square associations with outcomes. Among the 1,283 participants who provided complete survey data, after adjusting for demographic and clinical characteristics, three factors were associated with SGM patients’ satisfaction with their cancer care experience: having their cancer diagnosis delivered respectfully (AOR 2.14; 95% CI 1.54-1.76), receiving care in an SGM welcoming environment (AOR 6.25; 95% CI 4.25-8.85), and being treated by an SGM competent PCP (AOR 2.16; 95% CI 1.48-3.17). Two factors were associated with SGM patients’ self-rated health after cancer: receiving care in an SGM welcoming environment (AOR 1.45; 95% CI 1.05-2.02), and having a strong support network after cancer (AOR 1.95; 95% CI 1.31-2.90). Five factors were associated with SGM patients having less than 5 days of poor mental health: receiving care in an SGM welcoming environment (AOR 1.34; 95% CI 1.00-1.80), feeling safe disclosing their SGM identity in general (AOR 1.56; 95% CI 1.21-2.10), having primary support during cancer treatment (AOR 1.92; 95% CI 1.23-2.99), having a strong support network before cancer (AOR 1.31; 95% CI 1.03-1.67), and after cancer (AOR 1.61; 95% CI 1.08-2.38).

Associations among BIPOC participants

Supplemental Tables 7-9 for a full list of variables and Wald Chi Square associations with outcomes. A total of 1,301 participants identified as BIPOC (including anyone who identified as non-White or as having a Hispanic ethnicity). Among these participants, after adjusting for demographic and clinical characteristics, one factor was associated with BIPOC SGM patients’ satisfaction with their cancer care experience: receiving care in an SGM welcoming environment (AOR 6.54; 95% CI 3.14-13.51). One factor was associated with BIPOC SGM patients’ self-rated health after cancer: having a strong support network after cancer (AOR 2.56; 95% CI 1.34-4.90). One factor was associated with BIPOC SGM patients having less than 5 days of poor mental health: feeling their cancer care environment was welcoming after they disclosed their SGM identity (AOR 1.44; 95% CI 1.10-16.25).

Discussion

To our knowledge, the current study is the largest survey of cancer-related experiences and outcomes among SGM people. Results indicate that when asked, many SGM patients with cancer report being satisfied with the cancer care they received. Nearly a third, however, report that their physical health is poor, and on average people reported experiencing 9 or more days of poor mental health in the past month. These outcomes are complex, multifactorial, and require more assessment to inform development of resources and interventions for SGM communities affected by cancer.

SGM patients treated in SGM-welcoming cancer care environments were over 6 times more likely to report being satisfied with the care they received than those treated in non-welcoming environments; this factor remained significant in analyses involving complete cases and BIPOC participants, as well as those assessing physical and mental health. A SGM patient’s experience of the SGM-inclusivity of a cancer care environment begins from the moment they first enter the clinic.²⁸ Early environmental cues can include rainbow logos or “Safe Space” stickers on the clinic door, rainbow tags or tags listing the pronouns of clinic staff, and posters and other materials that show same-gender couples and gender minority individuals.²⁹ Other cues may include a non-discrimination policy, clearly displayed in clinic waiting rooms or common areas, that forbids discrimination on the basis of both sexual orientation and gender identity.³⁰ In this survey, only 1 in 10 respondents indicated they saw environmental indicators of SGM inclusivity in cancer practices, indicating a need for further attention to the practices’ physical spaces.

Being treated by providers who demonstrate SGM cultural competence or cultural humility was also associated with SGM patients’ satisfaction with care. Cultural competence and humility training about SGM patients is becoming increasingly common in healthcare spaces.^31,32 Based on the recommendations of these trainings, cancer care providers should use gender-neutral language when referring to patients before gender identity or pronouns are established.³³ Similarly, when assessing relationships and support structures, providers should ask generic questions like, “who takes care of you?” so as not to make assumptions about relationship structures. In general, cancer care providers should strive for verbal and non-verbal displays of compassion, respect, and interest in both the SGM patient and their caregivers. In situations where the provider lacks knowledge about a patient’s experience (e.g., when a patient uses a term for their identity that the provider has not previously heard), following the patient’s lead, mirroring their terms, asking for clarification and being open to learning may help to make the patient feel comfortable and acknowledged.³⁴

Feeling safe disclosing SOGI was associated with SGM patients’ satisfaction with care, as well as their self-reported physical and mental health. Cancer care practices can facilitate safe disclosure of SOGI through routine collection of SOGI data for all cancer patients.⁵ These data should be provided directly by patients and should never be assumed by providers or staff.³⁵ Previous research has indicated that patients prefer to disclose SOGI non-verbally, via a paper-based or digital form.³⁶ Guidance on best-practice questions to use for such documentation has been published by the National Academies of Sciences, Engineering, and Medicine, and other groups.³⁷ Medical records should also include space for preferred name and for pronouns (she/her, he/him, they/them, etc.) so that providers can use these data elements consistently.

Finally, strong social support was associated with SGM patients’ satisfaction with care, as well as their self-reported physical and mental health. To facilitate strong social support during a SGM patients’ cancer care experience, cancer providers should acknowledge diverse partners, friends, and “families of choice” and include them in medical decision making and planning where indicated by the patient.⁴ It is important to assess the preference of the SGM patient regarding who should be included in decisions, as SGM persons may be less likely to want families of origin involved in their medical care than H/C persons. Chosen caregivers should be supported in their role and their distress should be assessed, with appropriate referrals to tailored resources for caregivers where appropriate.³⁸

Limitations

Most of the literature on SGM cancer patients has relied on small convenience samples or cross-sectional samples from publicly available datasets where the generalizability to the broader SGM community is unknown. The current study is the largest of its type, but still represents a convenience sample that completed a single cross-sectional survey. The denominator of potential respondents is unknown. Selection bias may have been present, in that only SGM people comfortable in identifying as SGM may have responded to the survey invitation. Other unknowable biases may also have been present in the sampling. Despite attempts to reach racial and ethnic minority SGM cancer patients, the majority of the sample consisted of White, gay and lesbian, cisgender men and women. As we did not sample from clinics and so could not access patients’ medical records, we were unable to confirm cancer diagnoses or assess clinical factors like comorbidities, use of exogenous hormones, or other medical treatments. Future studies should use population-based sampling strategies and longitudinal designs to understand the experience of generalizable cohorts of SGM patients over time. Randomized controlled trials are also needed to assess the efficacy of interventions that can address mental and physical health outcomes for this population. Registries and national surveys that include cancer markers should include SOGI to promote systematic assessment of cancer disparities for this population.

Conclusion

This survey is an initial attempt to characterize the experiences and outcomes of SGM patients with cancer. We hope that this will inspire further research efforts that will allow both scientists and clinicians to address complex issues of SOGI in cancer and track the intersection of SGM identities with other minority identities (race/ethnicity, socioeconomic status, age, etc.). With additional research, we can begin to address the disparities confronted by SGM patients across the cancer continuum and advance the cause of health equity for patients who are diverse in their sexual orientations and gender identities.