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. Author manuscript; available in PMC: 2022 May 13.
Published in final edited form as: J Low Genit Tract Dis. 2021 Jan 1;25(1):48–52. doi: 10.1097/LGT.0000000000000571

Gay and bisexual men in the U.S. lack basic information about anal cancer

Christopher W Wheldon 1, Sarah B Maness 2, Jessica Y Islam 3, Ashish A Deshmukh 4, Alan G Nyitray 5
PMCID: PMC9101414  NIHMSID: NIHMS1800459  PMID: 32947485

Abstract

Objectives

The purpose of this study was to assess knowledge of HPV as a cause of anal cancer among at-risk gay, bisexual, and other men who have sex with men (GBM).

Methods

Secondary analysis was conducted of cross-sectional data from three cycles of the Health Information National Trends Survey (2017, 2018, 2019). Results were reported for the subset of adults who identified as GBM (N=212). Knowledge that HPV can cause anal cancer was the main outcome. Differences in knowledge were evaluated (using chi-square and multiple logistic regression) by demographic, health information factors, and access to care.

Results

Sixty-eight percent of GBM were aware of HPV. Knowledge that HPV causes anal cancer was low (<20%) in the overall sample and sample of GBM (17.9%; 95% CI: 11.0-24.7). GBM were no more knowledgeable that HPV causes anal cancer than heterosexual men (14.8%; 95% CI: 12.9-16.9; p=0.376). College-educated GBM had higher odds (Adjusted Odds Ratio=3.50; 95% CI: 1.02-11.97) of knowing HPV causes anal cancer than GBM with no college degree. No other factors were associated with knowledge.

Conclusions

GBM are largely unaware that HPV can cause anal cancer, despite high awareness of HPV itself. This is concerning given that GBM are at increased risk of HPV-associated anal cancer than the general population. Our findings suggest that information about anal cancer, and health information about the benefits of HPV vaccination for anal cancer prevention, are only reaching a small subset of college-educated GBM. Targeted anal cancer education programs are needed.

Keywords: Anal squamous cell carcinoma, Anus, Health Education, Population health, Men who have sex with men, Health disparities, Human Papillomavirus

Précis:

Gay and bisexual men in the U.S. lack basic information about anal cancer

INTRODUCTION

In the United States (US), there were an estimated 8,300 new cases of squamous cell carcinoma of the anal canal (hereinafter referred to as “anal cancer”) in 2019.1 The rate of new cases has increased 2.7% each year over the last decade, while mortality rates increased 3.1% per year between 2000 and 2015.1,2 With these increases, anal cancer is considered as one of the fastest rising causes of cancer incidence and mortality in the US.2 While rare in the general population, the risk is disproportionately elevated among gay, bisexual, and other men who have sex with men (GBM), especially HIV-positive GBM.3–5 Annual incidence rates in HIV-positive GBM range from 88 to 131 cases per 100,000,4,6 while the recent best estimate for HIV-negative GBM is 19 per 100,000;7 thus, incidence in HIV-positive and HIV—negative GBM is 19 to 131 times higher than approximately 1/100,000 incidence rate among men in the general population.8 In addition, GBM are more likely than heterosexual men or women to develop anal cancer at younger ages (<40 years old).9

Anal cancer is primarily caused by persistent infections with oncogenic human papillomavirus (HPV) types −16 or −18.10 Prophylactic HPV vaccination is a safe and effective primary prevention strategy.11 Routine HPV vaccination is currently recommended for males and females 11 or 12 years of age, catch-up vaccination is recommended up through age 26, and shared clinical decision making is recommended for adults 27 to 45 years of age.12 Cytology-based screening (i.e., anal Papanicolaou [PAP] testing) is also used to detect anal dysplasia that may progress to high-grade squamous intraepithelial lesions (HSIL)—considered a precursor to anal cancer.13 Treatment of HSIL through the use of high-resolution anoscopy may prevent anal cancers in high-risk populations. Currently, there are no national guidelines for anal cancer screening; however, an ongoing clinical trial (the Anal Cancer/HSIL Outcomes Research [ANCHOR] Study is positioned to inform future guidelines by evaluating the efficacy of treating high-grade AIN among people living with HIV (Identifier: NCT02135419).

Central to the successful uptake of anal cancer prevention recommendations among high-risk populations like GBM is a basic understanding of risk factors—namely HPV infection. Existing evidence suggest that there is limited information dissemination regarding anal cancer and related risks.14 Prior studies focused on GBM found a minority of GBM knew about anal cancer risk factors (e.g., HPV) or prevention of anal cancer in the early years surrounding HPV vaccine delivery.15–17 In a more recent population-based study of anal cancer knowledge in the general populations of adults in the U.S., anal cancer knowledge was low overall and remained low across survey years 2014 to 2017. 18 Similarly, knowledge and awareness of anal cancer was low in recent community-based studies of GBM.19,20 The generalizability of these studies is unclear given their reliance on non-probability based convenience samples.

The purpose of this study was to assess knowledge regarding HPV as a cause of anal cancer among the general U.S. population, among GBM specifically, and to determine factors associated with anal cancer knowledge among a subsample of GBM. The following research questions were addressed: What percent of the U.S. population knew that HPV can cause anal cancer between 2017 and 2019? Are GBM more likely than the general population to know that HPV can cause anal cancer? How does knowledge of anal cancer risk factors differ by sociodemographic characteristics, cancer information exposure/seeking, and healthcare access among GBM?

METHODS

Data were pooled from the US National Cancer Institute’s Health Information National Trends Survey 5 (HINTS 5) from cycles 1 (2017; N = 3285), 2 (2018; N = 3504), and 3 (2019 N = 5438). These cycles contain measures of HPV-related knowledge and sexual orientation. Each cycle is a nationally representative, cross-sectional survey of the non-institutionalized U.S. population 18 years of age and older. The participants were mailed self-administered questionnaires in all cycles; however, in cycle 3, participants were given the option to respond to a web-based questionnaire (38.0% opted to do so). All surveys were available in English or Spanish. The overall household response rates for these surveys were 32.4%, 32.9%, and 30.3% for cycles 1, 2, and 3, respectively. The study was deemed exempt from human subjects research by the Temple University Institutional Review Board.

Measures

Anal cancer knowledge.

HPV awareness was assessed with one item asking, “Have you ever heard of HPV? HPV stands for Human Papillomavirus. It is not HIV, HSV, or herpes.” Response options were “yes” or “no.” Knowledge of HPV as a cause of anal cancer was assessed with the following item: (1) “Do you think HPV can cause anal cancer?” Response options were “yes,” “no,” or “not sure.” A respondent was considered knowledgeable that HPV is a risk factor for anal cancer if they answered (1) “Yes” to the item about HPV awareness (“Have you ever heard of HPV? HPV stands for Human Papillomavirus”) and (2) answered “Yes” to the item, “Do you think HPV can cause anal cancer.” All other respondents (i.e., those unaware of HPV or those who responded “no” or “not sure” the anal cancer knowledge item) were considered lacking knowledge of HPV as a cause of anal cancer.

Demographics.

Demographic characteristics included in analyses were age, race/ethnicity, rural residence (using the 2013 U.S. Department of Agriculture’s Rural-Urban Designation), marital status, educational attainment, and sexual identity.

Health information and healthcare utilization.

One health information seeking item assessed whether respondents used the internet to look for information about cancer for “yourself” within the last 12 months. One item assessed previous knowledge of the HPV vaccine. The item read: “A vaccine to prevent HPV infection is available and is called the HPV shot, cervical cancer vaccine, or GARDASIL®. Before today, have you ever heard of the cervical cancer vaccine or HPV shot?” Responses were coded as yes or no. Medical home was measured with a single item: “Not including psychiatrists and other mental health professionals, is there a particular doctor, nurse, or other health professionals that you see most often?” which was asked under the heading, “Your Health Care.”

Data analysis

Data were analyzed using SAS 9.4. Sampling weights were used to adjust inferences for nonresponse and non-coverage biases. The standard errors were generated using the 50 jackknife replicate weights from each HINTS cycle. The pooled sample from the three waves was 11,581 after excluding cases with missing HPV knowledge (n = 646). Approximately 4.7% of the sample identified as gay/lesbian or bisexual. Among men, 220 (5.8%) identified as gay or bisexual. Complete case analysis resulted in a final sample of 212 gay and bisexual men for regression analysis. Logistic regression models were used to assess the independent associations of demographic variables (model 1), health information and healthcare utilization (model 2), and a combined model (model 3) with knowledge of HPV as a cause of anal cancer. Adjusted odds ratios (AOR) were used as the measure of association.

RESULTS

Awareness of HPV was high among GBM (68.2%; 95% CI: 55.1-81.2) and women (75.0%; 95% CI: 73.3-76.7), and lower among heterosexual men (56.4%; 95% CI: 53.9-58.1; p<0.001). Overall, knowledge that HPV causes anal cancer was low (less than 20%; Figure 1) across survey years. GBM were no more knowledgeable (17.9%; 95% CI: 11.0-24.7) that HPV causes anal cancer than heterosexual men (14.8%; 95% CI: 12.9-16.9; p=0.376), but a statistically (p<0.001) larger percentage of women (20.2%; 95% CI: 18.5-22.0) compared to heterosexual men were aware of this association (Figure 2).

Figure 1.

Figure 1.

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The percent of adults who knew that HPV can cause anal cancer weighted to represent the population of adults in the United States.

Figure 2.

Figure 2.

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Differences in knowledge that HPV can cause anal cancer between gay/bisexual men and men/women weighted to represent the population of adults in the United States.

Sample characteristics for GBM are reported in Table 1. College education (model 1) and having heard of the HPV vaccine (model 2) were significantly associated with anal cancer knowledge; however, in the combined model, only college education remained statistically significant (model3; AOR=3.50; 95% CI: 1.02-11.97).

Table 1.

Demographic characteristics, health information, and access to care associated with knowledge of HPV as a cause of anal cancer among gay and bisexual identified men in the U.S. (N = 212)

Total HPV Causes Anal Cancer OR (95% CI) Bivariate models AOR (95% CI) Model 1: Demographics characteristics AOR (95% CI) Model 2: Health information and access to care AOR (95% CI) Model 3: Full model
% (95% CI) % (95% CI)
Total 18.1 (11.1-25.1)
Demographics
Age, mean 44.0 (39.9-48.1) 46.3 (40.8-51.7) 1.01 (0.98-1.04) 1.01 (0.98-1.04) 1.02 (0.98-1.05)
Race/Ethnicity
  Hispanic 15.9 (3.9-28.0) 20.4 (0.0-50.6) 0.93 (0.14-6.25) 1.00 (0.17-5.70) 1.79 (0.21-15.40)
  White, non-Hispanic 61.3 (48.9-73.8) 21.6 (11.8-31.5) 1.00 1.00 1.00
  Black, non-Hispanic 12.8 (2.5-23.0) 7.7 (0.0-23.5) 0.30 (0.01-7.99) 0.60 (0.02-15.54) 0.61 (0.02-16.36)
 Other (American Indian, Alaska Native, Asian, Pacific Islander, multi-racial 10.0 (2.9-17.0) 6.2 (0.0-14.7) 0.24 (0.02-2.69) 0.17 (0.01-2.27) 0.22 (0.01-3.38)
Rural residence
  No 96.5 (93.9-99.1) 18.6 (11.3-25.8) 1.00 1.00 1.00
  Yes 3.5 (0.9-6.1) 6.4 (0.0-17.3) 0.30 (0.02-4.75) 0.47 (0.02-9.42) 0.68 (0.03-18.07)
Marital Status
  Divorced, Separated, Widowed 3.5 (1.2-5.7) 18.1 (0.5-35.8) 0.46 (0.10-2.08) 0.36 (0.05-2.69) 0.61 (0.12-3.13)
  Single, never married 76.1 (67.8-84.4) 14.3 (6.9-21.8) 0.35 (0.14-0.86) 0.43 (0.17-1.10) 0.60 (0.19-1.87)
  Married/Partnered 20.5 (13.1-27.8) 32.3 (17.4-47.2) 1.00 1.00 1.00
Sexual identity
  Gay 71.2 (56.6-85.8) 21.5 (12.1-30.9) 1.00 1.00 1.00
  Bisexual 28.8 (14.2-43.4) 9.8 (0.2-19.5) 0.40 (0.11-1.39) 0.47 (0.14-1.56) 0.42 (0.11-1.64)
Completed a 4-year college degree or higher
  No 58.4 (47.6-69.3) 8.4 (1.9-14.9) 1.00 1.00 1.00
  Yes 41.6 (30.7-52.4) 31.8 (20.3-43.3) 5.06 (1.79-14.28) 4.96 (1.70-14.51) 3.50 (1.02-11.97)
Health information and access to care
Heard of HPV vaccine
  No 50.9 (37.7-64.1) 7.0 (0.00-14.5) 1.00 1.00 1.00
  Yes 49.1 (35.9-62.3) 29.6 (16.5-42.8) 5.56 (1.33-23.20) 4.81 (1.12-20.63) 4.11 (0.80-21.13)
Used internet to look for cancer information in previous 12 months
  No 85.0 (78.6-91.4) 14.7 (7.6-21.8) 1.00 1.00 1.00
  Yes 15.0 (8.6-21.4) 37.8 (16.5-59.1) 3.53 (1.19-10.50) 2.71 (0.81-9.10) 2.93 (0.68-12.58)
Medical home
  No 31.8 (19.0-44.6) 10.6 (1.7-19.5) 1.00 1.00 1.00
  Yes 68.2 (55.4-81.0) 21.6 (12.1-31.1) 2.32 (0.77-6.99) 1.52 (0.49-4.69) 1.33 (0.36-4.89)
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Note. Bolded numbers are confidence intervals not including 1.

DISCUSSION

In this population-based study, we found that while GBM were aware of HPV, they did not know that HPV can cause anal cancer. This finding is troubling given that GBM have 10-50 times higher incidence of anal cancer than the general population. Anal cancer knowledge has been slow to disseminate in general, and among high-risk groups specifically, despite widespread awareness of HPV and high knowledge that HPV causes cervical cancer.15–17,19,21

Our finding that GBM have limited knowledge of HPV and anal cancer are similar to what was reported from prior community-based studies. For example, among a group of GBM attending a sexual health clinic in New York City, 85% reported to have heard of HPV, but only 24% were aware of the link between HPV and anal cancer.22 These data were collected in 2008, suggesting limited diffusion of HPV and anal cancer among GBM. In a separate study, 100% of GBM living with HIV correctly identified HPV as a cause of cancer; however, in this same sample, 0% knew that the incidence of anal cancer was increasing among GBM with HIV.23 Similarly, in another study, GBM with and without HIV infections believed that their relative risk of anal cancer was the same or lower than the general population.19 Collectively, our findings and the extant literature suggest that GBM lack basic information about anal cancer and its risk factors.

In this study, college education and awareness of HPV vaccine were associated with anal cancer knowledge; however, only college education remained statistically significant in the final model. This finding suggests that information diffusion about anal cancer, and relevant health information about the benefits of HPV vaccination for anal cancer prevention, are only reaching a subset of college educated GBM. Previous studies show that GBM with a college degree were more likely to have access to healthcare than their counterparts.22

In this study, although insignificant, we observed that having a medical home or a regular provider increased the odds of having anal cancer knowledge. This finding is similar to prior studies, suggesting that healthcare providers may play a valuable role in health education among GBM.22 Indeed, studies in the general population show that provider recommendation is the most important predictor of HPV vaccination uptake.24

It is well established that awareness and knowledge are not sufficient in promoting a health behavior.25 However, raising awareness of the risks of a particular disease and increasing knowledge related to availability of effective prevention strategies are necessary steps in promoting preventive behaviors.26 For example, it has been demonstrated that HPV knowledge was important in decisions regarding HPV vaccination among GBM, as it was associated with underlying risk perceptions and beliefs.27 In qualitative research, providing basic information about HPV and anal cancer increase positive attitudes and motivation to get vaccination among adult GBM.28 Interventions aimed at raising awareness about HPV and anal cancer among GBM, when combined with more targeted interventions to increase motivation and healthcare provider recommendations, could significantly impact anal cancer preventive behaviors (e.g., vaccination and screening) among GBM.

The findings presented here are based on cross-sectional data. The sample of GBM reflects population prevalence from other national studies; however, the absolute number was relatively small, resulting in wider confidence intervals for some estimates. Furthermore, important aspects of anal cancer knowledge (e.g., symptoms, screening) were not measured in the HINTS survey. Additional research is needed to inform the development and impact of targeted health education interventions focused on anal cancer.

CONCLUSION

GBM are largely unaware that HPV can cause anal cancer, despite high awareness of HPV itself. This is troubling given that GBM have much higher incidence of anal cancer than the general population and can directly benefit from available primary and secondary prevention strategies. Our findings suggest that information diffusion about anal cancer, and relevant health information about the benefits of HPV vaccination for anal cancer prevention, are only reaching a small subset of college-educated GBM. The 9-valent HPV vaccine is currently licensed for use in adults 18 to 45 years of age. Underutilization of HPV vaccine among adult GBM may be related to lack of information regarding the health benefits of the vaccine. Targeted health education programs are needed to provide information about anal cancer risks and prevention.

Funding Sources

JYI was supported by the UNC Cancer Care Quality Training Program (2T32CA116339-11).

Disclosures:

Dr. Deshmukh has received consulting fees from Merck for unrelated projects. The authors declared that there are no conflicts of interest.

Declaration of Interests:

Dr. Deshmukh has received consulting fees from Merck for unrelated projects.

Abbreviations and Acronyms:

US

United States of America

GBM

Gay, bisexual, and other men who have sex with men

HIV

human immunodeficiency virus

HPV

human papillomavirus

HSIL

high-grade squamous intraepithelial lesions

ANCHOR

Anal Cancer HSIL Outcomes Research

HINTS

Health Information National Trends Survey

HSV

Herpes Simplex Virus

SAS

statistical analysis system

AOR

Adjusted Odds Ratio

Contributor Information

Christopher W. Wheldon, Temple University College of Public Health, Department of Social and Behavioral Sciences, Philadelphia, PA USA

Sarah B. Maness, University of Oklahoma, Norman, OK USA

Jessica Y. Islam, UNC Lineberger Comprehensive Cancer Center, University of North Carolina, Chapel Hill, NC USA

Ashish A. Deshmukh, Center for Health Services Research, UT Health School of Public Health, Houston, TX USA

Alan G. Nyitray, Clinical Cancer Center/Center for AIDS Intervention Research, Medical College of Wisconsin, Milwaukee, WI USA

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