Testicular Cancer Knowledge and Viewpoints of American Men

Abstract

Introduction:

We sought to better understand the baseline knowledge and practices of the general population regarding testicular cancer (TC) and testicular self-examination (TSE) in an effort to understand whether current screening guidelines reflect their viewpoint. The U.S. Preventive Services Task Force (USPSTF) currently recommends against TSE for TC screening due to a lack of data to support a benefit. Early detection of TC may reduce the required burden of therapy and associated long-term toxicities.

Methods:

This was a cross-sectional survey study. Participants (median age 33 years, IQR 28–39) were recruited via Amazon Mechanical Turk, a validated crowdsourcing platform used to recruit minimally compensated participants.

Results:

A total of 250 men rated themselves as “somewhat unknowledgeable” about TC, with no respondents considering themselves “very knowledgeable.” Only 26.4% of men knew that TC was curable most of the time. Despite 90.8% of men feeling that their doctor had some role in discussing TC/TSE, only 17.2% had discussed these topics with their doctor. Even after being informed of the rationale behind USPSTF recommendations, only 8% of men thought that potential false positives of TSE would be more important than the rare chance of finding early TC.

Conclusions:

American men do not feel knowledgeable about TC, have a favorable attitude toward TSE and want their doctor to discuss these topics. Shared decision making regarding TC screening is warranted given the low risk of harm and patient interest, and continued accrual of data on this topic is necessary given the lack of prospective work to date.

Abbreviations and Acronyms

MTurk

Mechanical Turk

TC

testicular cancer

TSE

testicular self-examination

USPSTF

U.S. Preventive Services Task Force

Testicular cancer (TC) is the most common cancer in men aged 20–40 years and has excellent oncologic outcomes with treatment. Survivorship issues associated with long-term toxicities relating to treatment in this young population are being increasingly recognized. The burden of treatment in TC is stage dependent, suggesting that early diagnosis of TC should reduce long-term treatment toxicities.

In 2004, an era when TC survivorship issues were less recognized, the U.S. Preventive Services Task Force (USPSTF) reviewed evidence surrounding screening for TC and recommended against screening adolescent or adult males.¹ This was upheld following updates in 2009 and 2011. The rationale for this recommendation was that screening examinations performed by patients are unlikely to provide meaningful health benefits because of the low incidence rate and high survival rate of TC.¹

Despite these recommendations, this USPSTF report also indicates that the predictive value of testicular examination in asymptomatic patients is unknown.¹ Numerous articles have been published on public awareness of TC and self-examination around the world, and suggest that public knowledge of signs and symptoms are low. For example, 1 comparative study published in 2010 compared TC knowledge to a similar survey study conducted 20 years prior.^2,3 Although the authors report gains in knowledge about the existence of TC (99.4% vs 68%), knowledge about the signs, symptoms and causes of TC remained low,³ with additional recent work published internationally reporting similarly low knowledge.^4–8 More information about both testicular self-examination (TSE) and the signs and symptoms of TC should be provided to patients, and presumably this should be done by their provider. However, given that the USPSTF currently recommends this type of screening, little scholarly work exists addressing this potential area of improved practice.

Delay in treatment of TC has a negative impact on disease stage, treatment outcomes and mortality, and poor public awareness of the disease and possible prevention strategies (eg self-examination) could be improved. TSE presents an easy and cheap way to monitor the signs and symptoms of TC,⁴ thus making it a potentially ideal screening and prevention tool for a wide demographic. Given that increased TC knowledge combined with self-examination may have a role in improving detection of significant testicular pathology,^2–4 in the current study we surveyed the general American male population in an effort to better understand how practitioners should approach TC education and screening with patients.

Methods

Measures

This study was approved by our institutional review board (IRB No. 2019E0903). A 41-item survey instrument was developed internally by the Department of Urology Education Specialist, a PhD with 10 years of experience in behavioral science, including survey development and assessment, a fellowship-trained faculty attending specializing in oncology, and a full-time departmental research team with additional experience creating and designing survey metrics. The survey queried participants on the following: Part 1) Demographics (11 items); Part 2) Personal knowledge of TC (6 items);^2–8 Part 3) Personal knowledge of TSE, including from whom they received this information,^7,8 whether their doctor had discussed and/or demonstrated TSE with them,⁸ awareness of current guidelines (developed internally) and potential reasons to perform TSE (18 items, developed internally); and Part 4) Personal health status (6 items). See supplementary material for the full survey tool (https://www.urologypracticejournal.com). Items included rank order and multiple-choice formats. The survey underwent iterative review by the investigators and a pilot version of the survey was administered to 5 undergraduate research assistants for initial feedback (content, structure, organization, item clarity).

Survey Distribution

Survey distribution and participant recruitment were conducted via Mechanical Turk (MTurk, Amazon, Seattle, Washington), an online crowdsourcing platform seeking individuals to perform specific tasks for minimal compensation. Participants received a standard compensation of $0.85 for survey completion. Study data were collected and managed using the Web-based software platform Qualtrics, which was used for survey creation, distribution, data storage and informed consent.

Study Sample

Participants were men 18 years or older, were located in the United States (IP address tracking) and consented to the use of their survey data for research before completing the adjoining survey. Because Amazon MTurk requires additive fees for additional demographic specifications, no additional parameters (eg age) were set. However, these metrics were tracked and analyzed as part of our study objectives. A sample size of 250 was selected in advance for this study, given that previous literature^2–8 included study samples of anywhere from 174 to 1,000 participants. A sample size of 250 was determined to achieve adequate power to detect statistical significance. Study sample demographics and descriptive statistics can be found in table 1.

Table 1.

Study sample demographics and descriptives

Mean yrs age (SD)	35.5 (10.4)
No. race (%):
White	164 (65.6)
Black or African American	23 (9.2)
American Indian/Alaska Native	3 (1.2)
Asian	58 (23.2)
2 or more indicated	2 (0.8)
No. ethnicity (%):
Hispanic or Latino	41 (16.9)
Not Hispanic or Latino	202 (83.1)
No. marital status (%):
Single	64 (25.7)
In a relationship but not married	30 (12.0)
Married	131 (52.6)
Not married but living with partner	13 (5.2)
Divorced/separated	9 (3.6)
Widowed	2 (0.8)
No. highest level of education (%):
Less than high school degree	1 (0.4)
High school graduate or degree	15 (6.0)
Some college, no degree	43 (17.2)
Associate’s degree	18 (7.2)
Bachelor’s degree	142 (56.8)
Nonhealth care-based professional degree	5 (2.0)
Health care-based professional degree	2 (0.8)
Graduate degree	24 (9.6)
No. yearly household income (%):
Less than $20,000	31 (12.4)
$20,000–$34,999	43 (17.3)
$35,000–$49,999	46 (18.5)
$50,000–$74,999	51 (20.5)
$75,000–$99,999	45 (18.1)
$100,000–$149,999	20 (8.0)
$150,000–$199,999	9 (3.6)
$200,000 or more	4 (1.6)
No. currently working in the medical or health care field (%):
Yes	26 (10.4)
No	224 (89.6)
No. immediate family member currently working in medical or health care field (%):
Yes	42 (16.9)
No	207 (83.1)

Statistical Analysis

All data analysis was performed using SPSS® version 26.0. Descriptive data are presented as means (standard deviations) or proportions (percentages). Per study objectives, linear and logistic regression modeling for continuous and categorical variables, respectively, was used to examine significant predictors of our outcome variables of interest. For select questions, post hoc chi-square analyses were performed to compare group differences (categorical variables). We were specifically interested in examining the following outcomes: 1) knowledge of TC (rate) and predictors of higher rates of knowledge; 2) TSE awareness and predictors of higher rates of knowledge/awareness; 3) perceptions of their doctor’s role in providing TC and TSE awareness/knowledge, and what demographics particularly wanted this information at a higher rate; and 4) awareness and perceptions of the current guidelines (recommending against TSE), perceptions of the utility of performing TSE anyway and what demographics were more likely to want to perform TSE despite the lack of current recommendation to do so.

Results

Testicular Cancer Knowledge

Men’s self-perceived knowledge of TC appears in table 2. Most men were either as knowledgeable as others or somewhat unknowledgeable. No respondents considering themselves “very knowledgeable.” Regression modeling indicated that a higher income (p=0.004) and working in the medical field (p=0.018) impacted feelings of being more knowledgeable on the topic (model R²=0.144, p <0.001).

Table 2.

Breakdown of responses for perceptions of one's own knowledge about TC (Likert scale)

How knowledgeable do you feel about testicular cancer?
Not at all knowledgeable	23 (9.2%)
Somewhat unknowledgeable	76 (30.4%)
As knowledgeable as others	107 (42.8%)
Somewhat knowledgeable	44 (17.6%)
Very knowledgeable	0 (0.0%)
Mean score	2.69/5

We asked participants to answer objective questions about TC to assess their knowledge, and their answers appear in figure 1. Although 91.2% of men knew they could get cancer of the testicle(s), a minority (26.4%) knew that it is curable most of the time. Respondents were also unsure of which age group was most likely to develop TC: 50.8% answered an incorrect age range and 15.6% stated they did not know. Participants were also asked if they could think of any symptoms that might suggest someone has TC: only 62.4% said “yes,” and free-response answers appear in table 3. The most common suggestion was lump or swelling (68.6%).

Figure 1.

Objective measures of TC knowledge were variable, with minority (26.4%) knowing it is usually curable.

Table 3.

Free-response answers from participants when asked if they could think of any symptoms that might suggest someone has TC

Can you think of any symptoms that might suggest someone has TC?
Lump/swelling	107 (68.6%)
Pain	36 (23.1%)
Stomach-related	4 (2.6%)
Pain (not genital area)	4 (2.6%)
Medical diagnosis/test	1 (0.6%)
Sexual function	1 (0.6%)
Urine-related	3 (1.9%)

Testicular Self-Examination

Of respondents, 68.8% had heard they should check their testicles for cancer. Men said they had primarily received that information from their doctor (36.4%) or the Internet (29%, table 4). When asked how frequently men actually check their testicles for cancer, more than a third of respondents said they never performed TSE, with 20% saying they did so once per year (table 4). Regression modeling indicated that heterosexual men examined their testicles for cancer less frequently than homosexual men (p=0.013), and that those who rated themselves as more knowledgeable about TC checked themselves more frequently (p <0.001; model R²=0.360, p <0.001). Those with higher income (p=0.001) and those who rated themselves as more knowledgeable about TC (p <0.001) thought it was also more worthwhile to perform TSE (model R²=0.221, p <0.001).

Table 4.

Testicular self-examination

No. source of information regarding TSE (%):
My doctor	74 (46.0)
Another health care professional	26 (16.0)
In classroom or in textbook	33 (20.2)
Internet	72 (44.2)
TV or other media	56 (34.4)
Other	5 (3.1)
No. frequency of TSE (%):
Every mo	45 (18)
Every 6 mos	51 (20.4)
Every yr	47 (18.8)
Every few yrs	23 (9.2)
Never	84 (33.6)
No. knowledge of how to perform TSE (%):
Learned from doctor	68 (27.2)
Learned from nondoctor	86 (34.4)
No knowledge	96 (38.4)
No. frequency of discussion of signs/symptoms of TC with doctor (%):
More than once	36 (14.4)
Once	57 (22.8)
Never	157 (62.8)
No. frequency of doctor-demonstrated TSE (%):
More than once	26 (10.4)
Once	53 (21.1)
Never	171 (68.4)
No. preference on discussion of TC/TSE with doctor (%):
Has already discussed with doctor	43 (17.2)
Would like to discuss regularly (eg once/yr)	68 (27.2)
Would like to discuss once	89 (35.6)
Would not like to discuss	50 (20.0)

Men reported where they had received information regarding TSE, how frequently they performed TSE in actual practice and if/where they received information about performing TSE.

When asked what role participants thought their doctor has in addressing TC risk, 90.3% of men felt that their doctor had at least some role in discussing TC/TSE with them. Only 17.2% of men had already discussed TSE with their doctor, and only 10.4% had done so more than once. Preferences for wanting their doctor to discuss TC/TSE were mixed: about two-thirds of men wanted to discuss this at least once, while 20% did not want to discuss the topic at all (table 4). Regression modeling indicated that married men were more likely than single men to want their doctors to show them how to perform a self-examination (p=0.003), as did those with a higher education level (p=0.004). Again, those who rated themselves as feeling more knowledgeable about TC also wanted their doctor to discuss self-examination with them (p <0.001), as did men who rated themselves as healthier overall (p=0.006; model R²=0.299, p <0.001).

TSE Guidelines and Practices

Despite an increased risk of “false positives” when conducting TSE, 52.4% of men thought TSE was important for cancer screening, while only 8% thought TSE was not worth the risk (fig. 2). Men reported that they would be more likely to follow up with their doctor if they found something concerning, even with the increased cost and time (table 5). Regression modeling indicated that men who rated themselves as having higher knowledge about TC said they would want to examine themselves (p=0.002; model R²=0.137, p=0.008). When asked if they ended up getting TC, would they feel differently, only men who got physicals less often from their doctor were more likely to say yes (p <0.001) compared to men who visited their doctor more frequently (model R²=0.140, p=0.006). Additionally, homosexual men (p=0.003) and those with a higher income (p=0.03) said they would be more likely to do additional laboratory or blood work despite the cost should they find something abnormal that worried them (model R²=0.149, p=0.003).

Figure 2.

Despite increased risk of “false positives,” 52.4% of men thought TSE was important for cancer screening, while only 8% thought it was not worth risk.

Table 5.

Breakdown of men's responses to followup questions regarding TSE and TC

	Yes	No	p Value (chi-square)
Men who regularly examine their own testicles may be more likely to find an early testicular cancer. This may be good for treating their cancer. That being said, men who examine their own testicles for cancer will often feel things that are noncancerous, and this leads to unnecessary worry, testing (ultrasound/lab work) and specialist visits. Based on this information, would you want to examine yourself?	Yes: 131 (52.4%) Mixed: 99 (39.6%)	No: 20 (8.0%)
If you ended up getting testicular cancer, do you think you would feel differently?	Yes: 43/131 (32.8%) Mixed: 69/99 (69.7%) No: 9/20 (45.0%)	Yes: 88/131 (67.2%) Mixed: 30/99 (30.3%) No: 11/20 (55.0%)	<0.001
If you knew that testicular cancer was the most common cancer in your age group, do you think you would feel differently?	Yes: 43/131 (32.8%) Mixed: 52/99 (53.1%) No: 9/20 (45.0%)	Yes: 88/131 (67.2%) Mixed: 46/99 (46.9%) No: 11/20 (55.0%)	0.009 (chi-square)
If you knew that the most common symptom of testicular cancer is a bump that you could find by examining your own testicles (but most men don’t know this and only find out later than they could have), do you think you would feel differently?	Yes: 45/131 (34.4%) Mixed: 50/99 (50.5%) No: 8/20 (40.0%)	Yes: 86/131 (65.6%) Mixed: 49/99 (49.5%) No: 12/20 (60.0%)	0.048
If you examined your testicles and found something abnormal that worried you, your doctor would generally order an ultrasound and blood work, and send you to a specialist. This has no known harms to you but would take up your time and have some cost. Would you alert your doctor if you found something worrisome?	Yes: 122/131 (93.1%) Mixed: 79/99 (79.8%) No: 8/20 (40.0%)	Yes: 9/131 (6.9%) Mixed: 20/99 (20.2%) No: 12/20 (60.0%)	<0.001
If you found something abnormal while examining your testicles, would you be worried about it until a specialist told you what it was?	Yes: 116/131 (88.5%) Mixed: 76/99 (76.8%) No: 16/20 (80.0%)	Yes: 15/131 (11.5%) Mixed: 23/99 (23.2%) No: 4/20 (20.0%)	0.056
If you found something abnormal while examining your testicles and a specialist confidently reassured you that it was all right and nothing to be worried about, would you still be worried about it?	Yes: 24/131 (18.3%) Mixed: 15/99 (15.2%) No: 3/20 (15.0%)	Yes: 107/131 (81.7%) Mixed: 84/99 (84.8%) No: 17/20 (85.0%)	0.796

Responses are based on their initial response as to whether they would still like to perform TSE, despite the fact that they might be at risk for false positives and additional testing.

In the final portion of this survey, men were told about the current USPSTF recommendation against TSE. Of the men 31% said they already performed TSE and would either stop or discuss it with their doctor, 41.6% said they already performed TSE and would continue to do so, and 27.6% said that they were not performing TSE anyway. Regression modeling indicated that those who were more likely to want to perform TSE (despite the current guidelines) were also more knowledgeable about TC (p <0.001) and were those who already went to the doctor more often (p <0.001; model R²=0.287, p <0.001). Older adults also wanted their doctor to play an active role in this decision to perform TSE (p=0.002).

Discussion

American men are indeed aware of TC, with the majority of survey respondents indicating that they had heard of both TC (91%) and TSE (69%), which represents an increase in recent years.⁹ Despite the awareness, few men felt very knowledgeable on these topics. Unsurprisingly, knowledge of TC was related to income and education level. These findings support well-described disparities in male health knowledge and outcomes, likely originating from health care access limitations, lack of utilization of health care services available, and/or societal normative values and nonconformity for males to seek help.^10–13 We suggest that although it is important to educate men on TC and TSE, it may be of higher importance to continue to accrue data on this topic. For example, a prospective cohort study of men could examine how frequently those who perform TSE report benign findings and how often they require diagnostic tests, even if testis cancer would be rarely diagnosed.

The current recommendations by the USPSTF against TSE are likely being heeded by many primary care providers, with 68% of respondents stating that their doctor had not shown them how to conduct a TSE. This is unsurprising given that the USPSTF is the main body that makes cancer screening recommendations for primary care physicians in the United States. Despite this, respondents have significant interest in learning about TC from their doctor, and additional knowledge about TC correlates with a willingness to both learn more about and perform TSE. As such, our study provides initial data to instigate a call to action among health care providers and the creation of a discussion on whether changes should be made to the current USPSTF guidelines: men are desiring further TC and self-screening education and they want this information from the experts, their physicians. Additional prospective cohort studies examining frequency of either TC or additional tests stemming from TSE would add to this currently under studied area and provide additional support for this recommendation. A continued discussion on this topic should also address whether men should perform TSE (via physician education) vs whether additional or more efficient assessments for testicular problems should be available to men (ie by their physician).

Respondents who would perform TSE are highly likely to bring an abnormal finding to their doctor’s attention, theoretically allowing for an earlier pre-symptomatic diagnosis. Support for this comes from prior studies, which have shown that TSE creates a 90% possibility of early diagnosis.^14,15 Furthermore, other studies have reported that patients are agreeable to the ease, privacy and accessibility of TSE.^16,17 Given that treatment of TC is less intensive at earlier stages, earlier diagnosis should reduce long-term treatment toxicities experienced by survivors. Early diagnosis is also cost-effective. A cost-utility study equated the treatment for advanced-stage testicular tumor (seminoma at $48,877 and nonseminoma at $51,592) to 313–330 benign office visits ($156/visit) or 180–190 office visits with scrotal ultrasound ($272/visit).¹⁸ This study illustrated that there is an average of 2.4 to 1 cost-benefit ratio for early detection of TC compared to advanced stage disease and was consistent with the views of respondents to our survey, with only 8% feeling that the potential for false positives outweighed the potential benefits of TSE.

Our study is limited by likely differences between survey respondents and the general American population. The use of Amazon’s MTurk platform is an inexpensive and efficient form of data collection for organizational research that has been authenticated in the literature.¹⁹ Nonetheless, the majority of respondents had secondary education or higher, potentially indicating higher medical knowledge, a trend that has been reported broadly and in the men’s health literature.^20,21 Respondents were also computer literate, were English-speaking and volunteered for this survey. Regional variations were also not analyzed in this study. Findings from this study may be difficult to interpret outside the United States, particularly in societies with differing health care systems and attitudes toward male sexual health.

Conclusion

American men do not feel knowledgeable about TC. They are aware TC exists, have a favorable attitude toward screening with TSE and want their doctors to discuss both of these topics. Consequently, shared decision making regarding TC screening as well as continued, prospective accrual of data on this topic is warranted given patients’ interest and the low risk of patient harm.