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. Author manuscript; available in PMC: 2022 May 6.
Published in final edited form as: Cancer Causes Control. 2022 Jan 4;33(4):559–582. doi: 10.1007/s10552-021-01549-4

Perceptions of and barriers to cancer screening by the sexual and gender minority community: a glimpse into the health care disparity

Joseph Lombardo 1, Kevin Ko 1, Ayako Shimada 2, Christopher Wright 3, Jerry Chen 1, Alisha Maity 1, Marissa L Ruggiero 1, Scott Richard 4, Dimitrios Papanagnou 5, Edith Mitchell 6, Amy Leader 6, Nicole L Simone 1
PMCID: PMC9076188  NIHMSID: NIHMS1794123  PMID: 34984592

Abstract

Purpose:

A disparity exists in cancer screening rates for the lesbian, gay, bisexual, transgender and queer (LGBTQ+) community. We sought to understand the perceptions and baseline knowledge of cancer screening among LGBTQ+ community members.

Methods:

Survey administered via social media from June 2018 to October 2018. We asked thirty-one questions focused on cancer screening, human papillomavirus, emotional distress, and experience with the healthcare system. Those included were age-eligible for cancer screening. Cancer screening attitudes and knowledge, as well as perceptions of the health care system were investigated.

Results:

There were 422 respondents: 24.6% identified as female, 25.5% as male, 40.1% transgender and 9.6% as other. 65.4% of the LGBTQ+ community is not certain what cancer screening to do for themselves. Only 27.3% and 55.7% knew that HPV was a risk factor associated with head and neck cancer and anal cancer respectively. Half stated their emotional distress prevents them from getting cancer screening. It was identified that process changes in making appointments, comforts during the visit, and formal training for physicians and nurses could increase cancer screening compliance for this community. The transgender population had notably more gaps in knowledge of appropriate cancer screening and excess emotional distress.

Conclusion:

Gaps in cancer screening knowledge, and emotional and financial distress may be responsible for the disparity of lower cancer screening rates for the LGBTQ+ population, and the transgender population may be most at risk. Appreciating the cancer screening concerns of the LGBTQ+ population can help shape future clinical and institutional approaches to improve healthcare delivery.

Introduction

Cancer screening guidelines were initiated in the 1960’s and evidence demonstrates that early detection can decrease the number of cancer related deaths [12]. Unfortunately, existing cancer screening guidelines do not consider unique medical scenarios of the LGBTQ+ population which accounts for 4.5% of the US population [3]. In 2011, the LGBTQ+ population was identified as vulnerable after a report demonstrated the community has poor access to healthcare, increased proportion of persons with cancer, HIV, and depression and healthcare needs incompletely understood by medical professionals [4]. In 2015 the NIH established the sexual and gender minority (SGM) research office and by 2016, SGM were designated by the NCI as a health disparity population [5].

The oncology care disparities in the LGBTQ+ community are multifactorial and poorly understood. The 2011 National Transgender Discrimination Survey showed 50% of respondents postponed preventative care services because they could not afford it and 19% were denied health care because of their gender nonconforming status [69]. LQBTQ+ patients have a higher proportion of cancer risk factors including HIV, HPV, tobacco use, alcohol use, nulliparity, and a high fat diet [10]. The combination of increased risks of cancer, lack of access to health care, and distrust of providers is thought to translate to poor outcomes in the LGBTQ+ population [1112].

Despite the critical need for improved health care in the LGBTQ+ community, there are no cancer screening guidelines specific to the LGBTQ+ population which leads to uncertainty for both health care providers and community members [13]. In this study, we sought to understand the unmet and unique needs of the LGBTQ+ population. In a survey of over 400 LGBTQ+ community members, half of the respondents were not certain what cancer screenings should be done, what age they should begin, and half of patients had emotional distress due to cancer screening with 40% concerned about medical insurance. It was also found that respondents agree that cancer screening may improve if the medical infrastructure helped to decrease their emotional distress surrounding cancer screening with additional training for medical professionals, improved scheduling and comfort during exams. We present the first study assessing the knowledge and perceptions of the LGBTQ+ community on cancer screening.

Methods

An IRB approved redcap survey was administered on social media to engage LGBTQ+ community members via Thomas Jefferson University Hospital. The survey was posted 540 times between 6/2–10/10/2018 to online groups including general LGBT, transgender general, female to male, male to female, lesbian, gay, queer, bisexual, and other across the social media platforms Facebook, Reddit, and other blogs. 82% of the postings were on Facebook groups. The anonymous survey included a consent statement for the interviewee to agree to participate and no protected health information was collected as part of the survey. Participants were not compensated for completing the survey.

Inclusion/Exclusion Criteria

The target audience was individuals who self-identified with the LGBTQ+ community. We targeted English-speaking adults over the age of 18 as those would be eligible for cancer screening.

Survey

The survey was developed to better understand the knowledge and needs of the LGBTQ+ community, to increase cancer screening and reduce barriers towards medical care. The survey used words and phrases that were gender and identity neutral and considered inclusivity. The survey asked 31 questions across several topics: 1) awareness of cancer screening exams, 2) knowledge of HPV as a risk factor for certain cancers, 3) emotions experienced when going to the doctor, 4) experience with the healthcare system, and 5) demographic characteristics. (Table 1). The questionnaire ended with an open-ended response section to allow participants to provide suggestions on how to improve patient-provider interactions and the health care experience for LGBTQ+ patients.

Table 1.

Summary Statistics of Entire Survey (n = 422).

All
(n = 422)
Which of the following do you identify with?, n (%) 1
Female 103 (24.6)
Male 107 (25.5)
Transgender (FTM) 94 (22.4)
Transgender (MTF) 75 (17.9)
Other 40 (9.6)
What is your age?, n (%) 2
30 or Under 200 (48.0)
31 – 40 108 (25.9)
41 – 50 43 (10.3)
51 – 60 43 (10.3)
Over 60 23 (5.5)
Which of the following best describes your sexual orientation?, n (%) 3
Lesbian 79 (18.8)
Gay 106 (25.2)
Bisexual 85 (20.2)
Heterosexual 32 (7.6)
Queer 83 (19.7)
Other 36 (8.6)
Which of the following best describe the area in which you reside?, n (%) 2
Rural 72 (17.3)
Suburban 185 (44.4)
Urban 160 (38.4)
What is the highest level of education you have completed?, n (%)
Less than high school (grade 11 or less) 12 (2.8)
High school diploma (including GED) 36 (8.5)
Some college 104 (24.6)
Bachelor’s or associate’s degree 155 (36.7)
Some graduate training 24 (5.7)
Graduate or professional training 91 (21.6)
I am certain of what cancer screening to do for myself, n (%)
Yes 146 (34.6)
No 276 (65.4)
I am certain of what age to begin my cancer screening, n (%) 4
TRUE 120 (28.6)
FAULSE 300 (71.4)
Within the LGBTQ+ community, each sub-population has very different health concerns, n (%) 4
Strongly agree 116 (27.6)
Agree 219 (52.1)
Neutral 59 (14.1)
Disagree 15 (3.6)
Strongly disagree 11 (2.6)
Lesbian women (Checked), n (%)
Mammograms 400 (94.8)
Pap Smears 391 (92.7)
Oral Screening Exams 352 (83.4)
Gay men (Checked), n (%)
Mammograms 70 (16.6)
Pap Smears 45 (10.7)
Oral Screening Exams 383 (90.8)
Transgender men (Checked), n (%)
Mammograms 359 (85.1)
Pap Smears 344 (81.5)
Oral Screening Exams 361 (85.6)
Transgender men after mastectomy (Checked), n (%)
Mammograms 132 (31.3)
Pap Smears 334 (79.2)
Oral Screening Exams 362 (85.8)
Transgender women (Checked), n (%)
Mammograms 208 (49.3)
Pap Smears 99 (23.5)
Oral Screening Exams 372 (88.2)
Transgender women taking hormone supplements (Checked), n (%)
Mammograms 335 (79.4)
Pap Smears 107 (25.4)
Oral Screening Exams 362 (85.8)
Transgender men are at risk for breast cancer, n (%) 4
TRUE 391 (93.1)
FAULSE 29 (6.9)
Transgender women who are taking supplemental hormones are at risk for breast cancer, n (%) 1
TRUE 390 (93.1)
FAULSE 29 (6.9)
All sexually active people are at risk for HPV infections, n (%) 5
TRUE 388 (92.8)
FAULSE 30 (7.2)
A HPV infection is a risk factor for which cancers? (Checked), n (%)
Anal cancer 235 (55.7)
Cervical cancer 378 (89.6)
Head and Neck cancer 115 (27.3)
None 11 (2.6)
Nervous, anxious or on edge, n (%) 4
Never 19 (4.5)
Rarely 50 (11.9)
Sometimes 144 (34.3)
Often 101 (24.1)
Always 106 (25.2)
Excessively worried, cannot think about anything else, n (%) 1
Never 69 (16.5)
Rarely 116 (27.7)
Sometimes 105 (25.1)
Often 76 (18.1)
Always 53 (12.7)
Depressed or helpless, n (%) 1
Never 107 (25.5)
Rarely 121 (28.9)
Sometimes 120 (28.6)
Often 41 (9.8)
Always 30 (7.2)
Overwhelmed, n (%) 6
Never 68 (16.4)
Rarely 68 (16.4)
Sometimes 105 (25.3)
Often 101 (24.3)
Always 73 (17.6)
My concern about emotional distress prevents me from getting regular cancer screenings. (e.g. mammograms, pap smears, colonoscopies, etc...), n (%) 7
Strongly agree 86 (21.1)
Agree 116 (28.4)
Neutral 60 (14.7)
Disagree 93 (22.8)
Strongly disagree 53 (13.0)
I am concerned about medical insurance not paying for my screening services due to misgendering, n (%) 8
Strongly agree 66 (20.0)
Agree 77 (23.3)
Neutral 43 (13.0)
Disagree 65 (19.7)
Strongly disagree 79 (23.9)
Scheduling appointments online would be an effective method of avoiding confusion to figure out the screening appropriate for me, n (%) 9
Strongly agree 11 (2.7)
Agree 186 (45.9)
Neutral 80 (19.8)
Disagree 28 (6.9)
Strongly disagree 11 (2.7)
If staff did not use personal pronouns (Mr. / Mrs. / Miss. / Ms.) and instead called patients by their last name only, it would lessen misgendering and discomfort, n (%) 10
Strongly agree 143 (36.4)
Agree 132 (33.6)
Neutral 62 (15.8)
Disagree 33 (8.4)
Strongly disagree 23 (5.9)
I think it is important for __________ to have formal training to prevent misgendering / confusion when I present for my cancer screening (Checked), n (%)
Physicians 385 (91.2)
Nurses 382 (90.5)
Clerical staff 351 (83.2)
Technicians 343 (81.3)
Others 108 (25.6)
In order to make waiting areas more comfortable for all patients, I believe it is important to _______. (Checked), n (%)
Offer separate, private waiting areas for patents who request 209 (49.5)
Give patients the option to change immediately before imaging, to avoid waiting in gowns/robes 272 (64.5)
Use gender neutral decor (including patient garments) 291 (69.0)
None of these 50 (11.9)
Other 22 (5.2)
1

There were 3 missing data for this question

2

There were 5 missing data for this question

3

There were 1 missing data for this question

4

There were 2 missing data for this question

5

There were 4 missing data for this question

6

There were 7 missing data for this question

7

There were 14 missing data for this question

8

There were 92 missing data for this question

9

There were 17 missing data for this question

10

There were 29 missing data for this question.

Statistical Analysis

Subgroup analysis was performed to determine if a patient’s identification, age, residence area, and education status might influence their views on cancer screening. The subpopulations included: a) Trans (MTF, FTM, other) vs. Non-Trans (female, male), b) Age ≤ 30 vs. Age >30, c) Urban vs. Non-Urban (suburban and rural) and d) education: Non-Degree (Less than high school, high school diploma, some college) vs. Degree (Bachelor’s or associate’s degree, Some graduate training, graduate or professional training). Chi-square or Fisher’s exact test were conducted to investigate significant differences in subgroups. The significance level was set a priori to the 0.05 level. All analyses were performed with SAS 9.4 (SAS Institute Inc., Cary, NC).

Results

The survey was completed by 428 individuals with a complete data set from 422 individuals. Demographic data is summarized in Table 1 but briefly, 24.6% identified as female, 25.5% as male, 40.1% transgender (22.4% as transgender female to male, 17.7% as transgender male to female), and 9.6% as other. 52% of the respondents were over 30 years old, with most living in urban or suburban areas, and 64% with a college degree or greater.

Understanding and Beliefs of Screening

Overall, members of LGBTQ+ community are uncertain which cancer screening exams are appropriate. 276 respondents (65.4%) not certain what cancer screening to do for themselves and 300 (71.4%) uncertain what age to begin screening. It was clearly recognized by 79.7% of respondents, that each sub-population within the LGBTQ+ community has unique health concerns. While most respondents understood that the lesbian community should have breast (94.8% suggest mammograms) and cervical cancer (92.7% suggest pap smears) screening, the response was less overwhelming for the gay population. It was believed that mammogram screening should be done in 85.1% of transgender men, 31.3% of transgender men after mastectomy, 49.3% of transgender women, and 79.4% for transgender women who are taking hormone supplements. Interestingly, 390 (93.1%) answered it was true that transgender women who are taking supplemental hormones are at risk for breast cancer though not all believed screening should be done. The respondents views on the importance of pap smears for the transgender populations included 81.5% for transgender men, 79.3% for transgender men after mastectomy, 23.5% for transgender women, and 25.4% for transgender women taking hormone supplements.

Knowledge of Human Papilloma Virus Association with Cancer

It was universally understood by 92.8% of respondents that all sexually active people are at risk for HPV infections. To also gauge the knowledge of how HPV can affect cancer risk in the LGBTQ+ population, respondents were queried for their understanding of which cancer types were associated with HPV. While 89.6% appreciated that HPV was associated with cervical cancer, only 27.3% and 55.7% understood that HPV was associated with head and neck cancer and anal cancer respectively.

Personal Emotional Response to Cancer Screening

Several survey questions were designed to determine if members of the LGBTQ+ community have emotional distress associated with cancer screening. Most community members (83.6%) were nervous or anxious at least some of the time when thinking about cancer screening with 49.3% of individuals responding that they were often or always nervous/anxious with a smaller proportion (30.8%) feeling that they were excessively worried about cancer screening and unable to think of anything else. While 41.9% stated they were often or always overwhelmed by the thought on cancer screening, only 17% felt depressed or helpless. Almost 50% of LGBTQ+ community members either agreed or strongly agreed that their emotional distress prevents them from getting regular cancer screenings such as mammograms, pap smears and colonoscopies.

Health Care Infrastructure Perceptions

Questions were also designed to understand the intricacies of LGBTQ+ community members concerns with the healthcare infrastructure that may prevent comfort with appropriate cancer screening. Unfortunately, 43% either agreed or strongly agreed that they were concerned about their medical insurance not paying for screening services due to misgendering however 92 subjects did not answer this particular question. With regards to interacting with medical staff, 48.6% of people surveyed agreed or strongly agreed that scheduling appointments online would be an effective way of avoiding confusion regarding determining appropriate screening. Seventy percent agreed or strongly agreed that medical staff using last name alone instead of personal pronouns (Mr./Mrs.) would lessen misgendering and discomfort. Over 90% responded that they think it is important for physicians and nurses to have formal training to prevent misgendering and confusion when they have appointments for cancer screening. In order to make health care office waiting areas more comfortable for all patients, 49.5% believed offered a private waiting area is important, with 64.5% believing allowing patients to change just before imaging is important, and 69% believe that using gender neutral décor including garments is important.

Subgroup Analyses

Subgroup Analysis for Transgender vs. Non-Transgender Community Members (Subgroup A), Table 2.

Table 2.

Subgroup Analysis for Subgroup A (Trans vs. Non-Trans), n=419.

Non-Trans
(n=210, 50%)
Trans
(n=209, 50%)
p-value
I am certain of what cancer screening to do for myself (Yes), n (%) 81 (38.6) 63 (30.1) 0.07
A HPV infection is a risk factor for which cancers? (Checked), n (%)
Anal cancer 126 (60.0) 108 (51.7) 0.09
Cervical cancer 194 (92.4) 182 (87.1) 0.07
Head and Neck cancer 72 (34.3) 42 (20.1) <0.01
None 3 (1.4) 8 (3.8) 0.14
Nervous, anxious or on edge, n (%) 1
Never 14 (6.7) 5 (2.4) <0.01
Rarely 37 (17.7) 13 (6.3)
Sometimes 70 (33.5) 72 (34.6)
Often 49 (23.4) 52 (25.0)
Always 39 (18.7) 66 (25.2)
Excessively worried, cannot think about anything else, n (%) 2
Never 48 (23.1) 21 (10.1) <0.01
Rarely 64 (30.8) 50 (24.0)
Sometimes 43 (20.7) 61 (29.3)
Often 32 (15.4) 44 (21.2)
Always 21 (10.1) 32 (15.4)
Depressed or helpless, n (%) 2
Never 78 (37.5) 29 (13.9) <0.01
Rarely 62 (29.8) 57 (27.4)
Sometimes 47 (22.6) 72 (34.6)
Often 14 (6.7) 27 (13.0)
Always 7 (3.4) 23 (11.1)
Overwhelmed, n (%) 3
Never 49 (23.8) 19 (9.2) <0.01
Rarely 38 (18.5) 29 (14.1)
Sometimes 56 (27.2) 48 (23.3)
Often 38 (18.5) 62 (30.1)
Always 25 (12.1) 48 (23.3)
My concern about emotional distress prevents me from getting regular cancer screenings. (e.g. mammograms, pap smears, colonoscopies, etc...), n (%) 4
Strongly agree 25 (12.3) 61 (30.4) <0.01
Agree 44 (21.6) 70 (34.8)
Neutral 37 (18.1) 22 (11.0)
Disagree 63 (30.9) 30 (14.9)
Strongly disagree 35 (17.2) 18 (9.0)
I am concerned about medical insurance not paying for my screening services due to misgendering, n (%) 5
Strongly agree 6 (4.3) 58 (31.0) <0.01
Agree 11 (7.9) 66 (35.3)
Neutral 18 (12.9) 25 (13.4)
Disagree 38 (27.1) 26 (13.9)
Strongly disagree 67 (47.9) 12 (6.4)
Scheduling appointments online would be an effective method of avoiding confusion to figure out the screening appropriate for me, n (%) 6
Strongly agree 50 (25.4) 49 (23.9) 0.31
Agree 94 (47.7) 91 (44.4)
Neutral 34 (17.3) 46 (22.4)
Disagree 11 (5.6) 16 (7.8)
Strongly disagree 8 (4.1) 3 (1.5)
If staff did not use personal pronouns (Mr. / Mrs. / Miss. / Ms.) and instead called patients by their last name only, it would lessen misgendering and discomfort, n (%) 7
Strongly agree 52 (28.3) 91 (44.2) <0.01
Agree 64 (34.8) 68 (33.0)
Neutral 35 (19.0) 25 (12.1)
Disagree 16 (8.7) 16 (7.8)
Strongly disagree 17 (9.2) 6 (5.9)
I think it is important for __________ to have formal training to prevent misgendering / confusion when I present for my cancer screening (Checked), n (%)
Physicians 183 (87.1) 200 (95.7) <0.01
Nurses 184 (87.6) 196 (93.8) 0.03
Clerical staff 169 (80.5) 182 (87.1) 0.07
Technicians 161 (76.7) 182 (87.1) 0.01
Others 44 (21.0) 64 (30.6) 0.02
1

There were 2 missing data for this question (1 in Non-Trans and 1 in Trans)

2

There were 3 missing data for this question (2 in Non-Trans and 1 in Trans)

3

There were 7 missing data for this question (4 in Non-Trans and 3 in Trans)

4

There were 14 missing data for this question (6 in Non-Trans and 8 in Trans)

5

There were 92 missing data for this question (70 in Non-Trans and 22 in Trans)

6

There were 17 missing data for this question (13 in Non-Trans and 4 in Trans)

7

There were 29 missing data for this question (23 in Non-Trans and 3 in Trans).

This univariate analysis was done on 419 respondents and showed that 50% of respondents were transgender. There was a trend for transgender patients to be slightly less aware of what cancer screening should be done (30.1% vs 38.6%, p=0.07). In addition, the transgender population did not fully understand the link between HPV and various cancer types with a statistically significant difference in knowing the link between HPV and head and neck cancer (p < 0.01). Transgender community members were significantly more likely to be nervous/anxious, excessively worried, depressed/helpless and overwhelmed by thoughts of cancer screening (p <0.01 for all questions). In addition, transgender patients were more likely to have emotional distress regarding misgendering and insurance payments (p < 0.01 for all questions). Formal training for healthcare providers was thought to be more significantly prudent by transgender patients.

Subgroup Analysis for Age ≤ 30 vs. Age > 30 (Subgroup B), Table 3.

Table 3.

Subgroup Analysis for Subgroup B (Age ≤ 30 vs. Age > 30), n=417.

Age ≤ 30 (n=200, 48%) Age > 30 (n=217, 52%) p-value
I am certain of what cancer screening to do for myself (Yes), n (%) 61 (30.5) 83 (38.3) 0.10
A HPV infection is a risk factor for which cancers? (Checked), n (%)
Anal cancer 99 (49.5) 134 (61.8) 0.01
Cervical cancer 191 (95.5) 184 (84.8) < 0.01
Head and Neck cancer 52 (26.0) 62 (28.6) 0.56
None 3 (1.5) 8 (3.7) 0.22
Nervous, anxious or on edge, n (%) 1
Never 7 (3.5) 12 (5.6) 0.07
Rarely 20 (10.0) 29 (13.4)
Sometimes 61 (30.5) 82 (38.0)
Often 50 (25.0) 49 (22.7)
Always 62 (31.0) 44 (20.4)
Excessively worried, cannot think about anything else, n (%) 2
Never 29 (14.6) 39 (18.1) 0.08
Rarely 46 (23.1) 69 (31.9)
Sometimes 50 (25.1) 53 (24.5)
Often 43 (21.6) 33 (15.3)
Always 31 (15.6) 22 (10.2)
Depressed or helpless, n (%) 2
Never 47 (23.6) 58 (26.9) 0.84
Rarely 58 (29.2) 61 (28.2)
Sometimes 56 (28.1) 64 (29.6)
Often 22 (11.1) 19 (8.8)
Always 16 (8.0) 14 (7.2)
Overwhelmed, n (%) 3
Never 22 (11.2) 45 (21.0) 0.01
Rarely 30 (15.2) 38 (17.8)
Sometimes 46 (23.4) 57 (26.6)
Often 61 (31.0) 39 (18.2)
Always 38 (19.3) 35 (16.4)
My concern about emotional distress prevents me from getting regular cancer screenings. (e.g. mammograms, pap smears, colonoscopies, etc...), n (%) 4
Strongly agree 48 (25.3) 38 (17.8) 0.37
Agree 50 (26.3) 64 (29.9)
Neutral 30 (15.8) 30 (14.0)
Disagree 40 (21.1) 53 (24.8)
Strongly disagree 22 (11.6) 29 (13.6)
I am concerned about medical insurance not paying for my screening services due to misgendering, n (%) 5
Strongly agree 31 (20.5) 35 (19.9) 0.70
Agree 30 (19.9) 46 (26.1)
Neutral 20 (13.3) 23 (13.1)
Disagree 33 (21.9) 31 (17.6)
Strongly disagree 37 (24.5) 41 (23.3)
Scheduling appointments online would be an effective method of avoiding confusion to figure out the screening appropriate for me, n (%) 6
Strongly agree 49 (25.8) 50 (23.7) 0.14
Agree 92 (48.4) 93 (44.1)
Neutral 38 (20.0) 40 (19.0)
Disagree 9 (4.7) 19 (9.0)
Strongly disagree 2 (1.1) 9 (4.3)
If staff did not use personal pronouns (Mr. / Mrs. / Miss. / Ms.) and instead called patients by their last name only, it would lessen misgendering and discomfort, n (%) 7
Strongly agree 72 (38.7) 69 (33.8) 0.18
Agree 69 (37.1) 62 (30.4)
Neutral 24 (12.9) 38 (18.6)
Disagree 12 (6.5) 21 (10.3)
Strongly disagree 9 (4.8) 14 (6.9)
I think it is important for __________ to have formal training to prevent misgendering / confusion when I present for my cancer screening (Checked), n (%)
Physicians 183 (91.5) 199 (91.7) 0.94
Nurses 189 (94.5) 190 (87.6) 0.01
Clerical staff 170 (85.0) 178 (82.0) 0.41
Technicians 165 (82.5) 175 (80.7) 0.63
Others 47 (23.5) 61 (28.1) 0.28
1

There were 1 missing data for this question (1 in Age > 30)

2

There were 2 missing data for this question (1 in Age ≤ 30 and 1 in Age > 30)

3

There were 6 missing data for this question (3 in Age ≤ 30 and 3 in Age > 30)

4

There were 13 missing data for this question (10 in Age ≤ 30 and 3 in Age > 30)

5

There were 90 missing data for this question (49 in Age ≤ 30 and 41 in Age > 30),

6

There were 16 missing data for this question (10 in Age ≤ 30 and 6 in Age > 30)

7

There were 27 missing data for this question (14 in Age ≤ 30 and 13 in Age > 30).

To determine if age affected beliefs of cancer screening, analysis was done for 417 respondents less than (48%) and greater than age 30 (52%). Patients >30 trended to be more aware of what cancer screening should be done. While significantly more respondents >30 years old were aware that anal cancer was associated with HPV (p=0.01), they were significantly less likely to associate HPV with cervical cancer (p < 0.01). The >30 year old population had a trend toward having less nervousness/anxiety, excessive worrying, depression/helplessness, and were significantly less likely to feel overwhelmed (p=0.01).

Subgroup Analysis for Urban vs. Non-Urban (Subgroup C), Table 4.

Table 4.

Subgroup Analysis for Subgroup C (Urban vs. Non-Urban), n=417.

Non-Urban (n=257, 62%) Urban (n=160, 38%) p-value
I am certain of what cancer screening to do for myself (Yes), n (%) 87 (33.9) 57 (35.6) 0.71
A HPV infection is a risk factor for which cancers? (Checked), n (%)
Anal cancer 134 (52.1) 98 (61.3) 0.07
Cervical cancer 230 (89.5) 143 (89.4) 0.97
Head and Neck cancer 64 (24.9) 50 (31.3) 0.16
None 8 (3.1) 3 (1.9) 0.54
Nervous, anxious or on edge, n (%) 1
Never 12 (4.7) 7 (4.4) 0.20
Rarely 33 (12.9) 17 (10.7)
Sometimes 78 (30.5) 66 (41.5)
Often 68 (26.6) 31 (19.5)
Always 65 (15.4) 38 (23.9)
Excessively worried, cannot think about anything else, n (%) 2
Never 43 (16.9) 26 (16.4) 0.93
Rarely 70 (27.5) 45 (28.3)
Sometimes 61 (23.9) 43 (27.0)
Often 48 (18.8) 26 (16.4)
Always 33 (12.9) 19 (12.0)
Depressed or helpless, n (%) 2
Never 69 (27.1) 38 (23.9) 0.32
Rarely 69 (27.1) 50 (31.5)
Sometimes 69 (27.1) 50 (31.5)
Often 30 (11.8) 10 (6.3)
Always 18 (7.1) 11 (6.9)
Overwhelmed, n (%) 3
Never 44 (18.6) 25 (15.9) 0.39
Rarely 39 (15.4) 28 (17.8)
Sometimes 57 (22.5) 47 (29.9)
Often 66 (26.1) 33 (21.0)
Always 47 (18.6) 25 (15.9)
My concern about emotional distress prevents me from getting regular cancer screenings. (e.g. mammograms, pap smears, colonoscopies, etc...), n (%) 4
Strongly agree 54 (22.0) 30 (19.1) 0.94
Agree 66 (26.8) 47 (29.9)
Neutral 36 (14.6) 24 (15.3)
Disagree 58 (23.6) 35 (22.3)
Strongly disagree 32 (13.0) 21 (13.4)
I am concerned about medical insurance not paying for my screening services due to misgendering, n (%) 5
Strongly agree 38 (19.1) 26 (20.5) 0.57
Agree 45 (22.6) 32 (25.2)
Neutral 30 (15.1) 13 (10.2)
Disagree 42 (21.1) 22 (17.3)
Strongly disagree 44 (22.1) 34 (26.8)
Scheduling appointments online would be an effective method of avoiding confusion to figure out the screening appropriate for me, n (%) 6
Strongly agree 52 (20.9) 44 (29.1) 0.06
Agree 111 (44.6) 75 (49.7)
Neutral 58 (23.3) 21 (13.9)
Disagree 20 (8.0) 8 (5.3)
Strongly disagree 8 (3.2) 3 (2.0)
If staff did not use personal pronouns (Mr. / Mrs. / Miss. / Ms.) and instead called patients by their last name only, it would lessen misgendering and discomfort, n (%) 7
Strongly agree 89 (37.1) 53 (35.8) 0.88
Agree 78 (32.5) 52 (35.1)
Neutral 36 (15.0) 25 (16.9)
Disagree 22 (9.2) 10 (6.8)
Strongly disagree 15 (6.3) 8 (5.4)
I think it is important for __________ to have formal training to prevent misgendering / confusion when I present for my cancer screening (Checked), n (%)
Physicians 232 (90.3) 148 (92.5) 0.44
Nurses 232 (90.3) 145 (90.6) 0.91
Clerical staff 214 (83.3) 133 (83.1) 0.97
Technicians 206 (80.2) 133 (83.1) 0.45
Others 72 (28.0) 34 (25.4) 0.12
1

There were 2 missing data for this question (1 in Non-Urban and 1 in Urban).

2

There were 3 missing data for this question (2 in Non-Urban and 1 in Urban).

3

There were 7 missing data for this question (4 in Non-Urban and 3 in Urban).

4

There were 14 missing data for this question (11 in Non-Urban and 3 in Urban).

5

There were 91 missing data for this question (58 in Non-Urban and 33 in Urban).

6

There were 17 missing data for this question (8 in Non-Urban and 9 in Urban).

7

There were 29 missing data for this question (17 in Non-Urban and 12 in Urban).

Of the 417 respondents, no statistically significant differences were observed.

Subgroup Analysis for Degree vs. Non-Degree (Subgroup D), Table 5.

Table 5.

Subgroup Analysis for Subgroup D (Degree vs. Non-degree), n=422.

Non-Degree (n=152, 36%) Degree (n=270, 64%) p-value
I am certain of what cancer screening to do for myself (Yes), n (%) 43 (28.3) 103 (38.2) 0.04
A HPV infection is a risk factor for which cancers? (Checked), n (%)
Anal cancer 81 (53.3) 154 (57.0) 0.46
Cervical cancer 132 (86.8) 246 (91.1) 0.17
Head and Neck cancer 32 (21.1) 83 (30.7) 0.03
None 6 (4.0) 5 (1.9) 0.21
Nervous, anxious or on edge, n (%) 1
Never 6 (4.5) 13 (4.8) 0.01
Rarely 12 (8.0) 38 (14.1)
Sometimes 45 (29.8) 99 (36.8)
Often 35 (23.2) 66 (24.5)
Always 53 (35.1) 53 (19.7)
Excessively worried, cannot think about anything else, n (%) 2
Never 16 (10.6) 53 (19.8) < 0.01
Rarely 39 (25.8) 77 (28.7)
Sometimes 31 (20.5) 74 (27.6)
Often 36 (23.8) 40 (14.9)
Always 29 (19.2) 24 (9.0)
Depressed or helpless, n (%) 2
Never 28 (18.5) 79 (29.5) < 0.01
Rarely 44 (29.1) 77 (28.7)
Sometimes 39 (25.8) 81 (30.2)
Often 24 (15.9) 17 (6.3)
Always 16 (10.6) 14 (5.2)
Overwhelmed, n (%) 3
Never 15 (10.0) 53 (20.0) 0.01
Rarely 27 (18.0) 41 (15.5)
Sometimes 31 (20.7) 74 (27.9)
Often 45 (30.0) 56 (21.1)
Always 32 (21.3) 41 (15.5)
My concern about emotional distress prevents me from getting regular cancer screenings. (e.g. mammograms, pap smears, colonoscopies, etc...), n (%) 4
Strongly agree 38 (26.6) 48 (18.1) 0.05
Agree 44 (30.8) 72 (27.2)
Neutral 22 (15.4) 38 (14.3)
Disagree 28 (19.6) 65 (24.5)
Strongly disagree 11 (7.7) 42 (15.9)
I am concerned about medical insurance not paying for my screening services due to misgendering, n (%) 5
Strongly agree 32 (26.2) 34 (16.4) 0.12
Agree 32 (26.2) 45 (21.6)
Neutral 14 (11.5) 29 (13.9)
Disagree 20 (16.4) 45 (21.6)
Strongly disagree 24 (19.7) 55 (26.4)
Scheduling appointments online would be an effective method of avoiding confusion to figure out the screening appropriate for me, n (%) 6
Strongly agree 37 (25.3) 63 (24.3) 0.96
Agree 67 (45.9) 119 (46.0)
Neutral 27 (18.5) 53 (20.5)
Disagree 10 (6.9) 18 (7.0)
Strongly disagree 5 (3.4) 6 (2.3)
If staff did not use personal pronouns (Mr. / Mrs. / Miss. / Ms.) and instead called patients by their last name only, it would lessen misgendering and discomfort, n (%) 7
Strongly agree 55 (38.5) 88 (35.2) 0.43
Agree 52 (36.4) 80 (32.0)
Neutral 19 (13.3) 43 (17.2)
Disagree 8 (5.6) 25 (10.0)
Strongly disagree 9 (6.3) 14 (5.6)
I think it is important for __________ to have formal training to prevent misgendering / confusion when I present for my cancer screening (Checked), n (%)
Physicians 135 (88.8) 250 (92.6) 0.19
Nurses 133 (87.5) 249 (92.2) 0.11
Clerical staff 122 (80.3) 229 (84.8) 0.23
Technicians 116 (76.3) 227 (84.1) 0.05
Others 38 (25.0) 70 (25.9) 0.83
1

There were 2 missing data for this question (1 in Non-Degree and 1 in Degree).

2

There were 3 missing data for this question (1 in Non-Degree and 2 in Degree).

3

There were 7 missing data for this question (2 in Non-Degree and 5 in Degree).

4

There were 14 missing data for this question (9 in Non-Degree and 5 in Degree).

5

There were 92 missing data for this question (30 in Non-Degree and 62 in Degree).

6

There were 17 missing data for this question (6 in Non-Degree and 11 in Degree).

7

There were 29 missing data for this question (9 in Non-Degree and 20 in Degree).

Subgroup analysis was done to determine if those with a degree (64% with a Bachelor’s or Associate’s degree, some graduate training, graduate or professional training) were more comfortable with cancer screening. All 422 respondents were included and those with a degree had a significantly increased proportion of respondents understanding what screening to (p=0.04) with a trend towards improved awareness of the HPV association with various cancers, especially head and neck cancer (p=0.03). Respondents without a degree were significantly more likely to have any distress such as nervousness/anxiety (p=0.01), excessively worried (p<0.01), depressed/helpless (p<0.01) and were less likely to be overwhelmed (p=0.01) when thinking about cancer screening.

Discussion

The results of this survey include the baseline knowledge of cancer screening in the LGBTQ+ patient population and reveals barriers and unmet needs in the health care system as identified by this diverse group of individuals. Overall, the LGBTQ+ community we surveyed were unsure of the appropriately indicated cancer screening and, when coupled with emotional and financial concerns, negatively impacted the desire for members of the SGM community to adhere to cancer screening. The survey input from the community provides ideas for interventions that may decrease emotional distress when visiting a health care professional including an option for online scheduling, not using personal pronouns, providing gender neutral gowns and office décor, and providing all staff with basic education about the LGBTQ+ community.

To decrease health disparities in cancer outcomes for the LGBTQ+ population, it is essential that community members understand the cancer screening that should be undertaken but it was found that approximately two-thirds of those surveyed were not certain what cancer screenings should be done for themselves and almost three-quarters were unsure what age screening should begin. Cancer screening is especially important since it has been established that the LGBTQ+ population have increased risk factors for cancer including increased rates of tobacco and alcohol consumption [1416].

Most individuals surveyed agreed each LGBTQ+ sub-population has different health concerns, however the respondents had no consensus about which specific screenings are recommended, especially in transgender patients. For example, community members were unified in their perspective on screening recommendations for the lesbian population but not the transgender population. This is congruent with studies showing transgender women were less likely to have screening mammograms [17]. Based on the present survey, 93% of respondents agreed that transgender women taking hormones are at increased risk for breast cancer. It is known that 71% of MTF take exogenous hormones which allows breast tissue to transition to Tanner stage IV and create biological changes, but the malignant potential is unknown and warrants further investigation to create definitive recommendations [18]. Population based studies from the Dutch (2,307 patients) and the U.S. Veterans Administration Healthcare System (3,566 patients) demonstrate a reduced risk of breast cancer for transgender compared to cis-gender women [1920]. Although the incidence may be slightly lower in transgender women, the Dutch found that 60% of MTF have dense or extremely dense breasts indicating possible false negative mammogram results with recommendations for a second method of breast screening [13,21]. In addition, depending on the type of mastectomy performed, patients may still need screening depending on how much breast tissue was removed [22]. UCSF has developed screening recommendations suggesting mammogram every two years starting at age 50 or 10 years after starting hormone therapy which may be controversial since some patients will begin exogenous hormones as young as 10–12 years old [23]. Community members with advanced degrees had a more accurate assessment of cancer screening needed. The confusion surrounding cancer screening is multifactorial, stemming in part from the lack of trust in the health care community, lack of physician education, and lack of consensus guidelines. Standardized and national guidelines need to be established by governing bodies such as NCCN and ASCO that consider the type of gender reassigning surgeries a patient may have had and the duration of exogenous hormone therapy.

Overall the risks associated with HPV infection were not well understood, with the least awareness from the transgender population. Most understood infection was related to sexual activity and cervical cancer, however only half of those surveyed knew that HPV is a risk for anal cancer and less than a third knew it was a risk for head and neck cancer. Since the LGBTQ+ population has increased risk for HPV infection and lower rates of vaccination, this survey suggests additional education of the risks of HPV infection and benefits of vaccination is crucial and could have a significant impact on this population, especially now that the CDC has expanded the vaccine recommended ages up to age 45 [2429].

Evaluating potential reasons community members may decline or avoid cancer screenings, it was found that emotional and financial concerns contribute to the cancer screening disparity in the LGBTQ+ population. Seeking healthcare can be an emotional burden, but the LGBTQ+ population may be more vulnerable [3031]. This study found that 83.6% of community members were nervous or anxious at least some of the time, 41.9% often/always overwhelmed and 17% felt depressed/helpless. This notion is supported since anxiety and depression are more prevalent in SGM youth [3233]. Half of our respondents stated emotional distress prevented them from getting cancer screening which is a public health concern. In particular, the transgender population is most prone to anxiety, worry and depression making this population vulnerable. Respondents with advanced education or older age had less overall emotional distress suggesting improved education on cancer screening may improve concerns. Lastly, 43% of all respondents and 66% of transgender respondents were concerned that insurance would not cover cancer screening due to misgendering. This is complex because patients in same-sex relationships are less likely to have health insurance coverage [35].

Implementing change in cancer screening perspectives will require a multidisciplinary approach and the survey results demonstrate that online scheduling of appointments, education and training for healthcare professionals to include sensitivity and creation of comfortable space in waiting and changing rooms with neutral décor may improve screening rates. Survey respondents believed changes to the process of making appointments and comfort with the actual visit could make a difference in their perceptions of cancer screening. For instance, 48% wanted the ability to schedule appointments online to avoid using pronouns (70%) and confusion regarding which screening should be done, 70% wanted gender neutral décor including garments and 50–65% wanted alternate waiting and changing rooms. Prior studies suggest that equality signs and gender-neutral language were perceived as safer [36]. Over 90% responded it is important for health care providers to have formal training to prevent misgendering and confusion during cancer screening appointments which has been shown in other studies [37]. The SGM population is known to use word of mouth and social media to find providers who are LGBTQ+ “friendly” [38]. The Association of Professors of Gynecology is designing curricula for medical students but education about unique medical concerns of the LGBTQ+ population for all health care providers is needed to establish increased comfort of our patients and increased rates of cancer screening [39].

These findings suggest that gaps in cancer screening knowledge and emotional and financial distress for the LGBTQ+ population may be at the root of the disparity that exists in lower cancer screening rates. The medical community must establish cancer screening guidelines nuanced on specific health care issues related to SGM patients that must be coupled with education for the LGBTQ+ population about what cancer screening should be done when. In addition, while some may be reticent to undergo cancer screening, many SGM patients may reconsider if they believed healthcare professionals had more education on the topic and the environment was more sensitive to specific needs. This study has shown that the transgender population is most at risk due to gaps in knowledge of appropriate cancer screening and excess emotional distress. Appreciating the cancer screening concerns of the LGBTQ+ population and nuances of each subpopulation can help shape future clinical and institutional approaches to improve healthcare delivery. There should be continued research on sexual and gender minority cancer screening disparities so that plans for implementing optimal health care delivery can ensue.

Supplementary Material

Supplement file

Funding

This work was supported by the NCI Cancer Center Grant P30CA056036 for supporting the Biostatistics Core.

Footnotes

Conflict of interest

The authors declare no conflict of interest.

Declarations

Ethics Approval

IRB: The Institutional Review Board approved this study prior to data collection.

Consent to participate

Informed consent was obtained from all individual participants included in the study

Consent for publication

Informed consent was obtained from all individual participants included in the study

Code Availability

Not applicable

Availability of data and material

All data generated or analysed during this study are included in this published article and its supplementary information files

References

Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Supplementary Materials

Supplement file

Data Availability Statement

All data generated or analysed during this study are included in this published article and its supplementary information files

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