Human papillomavirus (HPV) is a common sexually transmitted infection (STI). A recent study in Manchester, UK, found that 40% of women aged 20–24 years tested positive for high-risk types of the virus.¹ Strong evidence for the role of persistent high-risk HPV in the aetiology of cervical cancer² has resulted in HPV testing being recommended as part of cervical screening in the US, and work is under way to consider its role in the National Screening Programme in the UK. Prophylactic HPV vaccination has recently been licensed for use in Europe³ and is recommended for girls aged 11–12 years in the US.⁴

Despite the enormous progress in research on HPV, most of the general public remain unaware of the virus.⁵ But inevitably, as testing and vaccination become more widely used, public awareness will grow, and this could change the way that cervical cancer is perceived. Some researchers and clinicians have expressed concern that greater public awareness of the link with HPV could lead to stigmatisation of cervical cancer and perhaps even reluctance to attend for screening because of the sexually transmitted nature of the virus. This idea is consistent with studies of screening for other STIs (eg, chlamydia,⁶ gonorrhoea and HIV⁷) and has received some support from qualitative studies of HPV testing. Women testing positive for HPV in the context of cervical screening report feelings of stigma and shame, but only when they are aware that the virus is sexually transmitted.⁸ There is also evidence that receiving a positive HPV result is associated with higher anxiety than simply having an abnormal smear result.^9,10

One way of reducing negative feelings may be to emphasise the high prevalence of HPV, thereby “normalising” infection. This is consistent with theories of stigma which propose that “standards … derive in part from the prevalence of the phenomenon that is being judged”.¹¹ Experimental research has also shown that infections perceived to be common are judged to be less serious than those perceived to be rare,¹² so anxiety about HPV might be less if it were known to be common. In addition, qualitative work with HPV positive women indicates that understanding the high prevalence of the virus may reduce feelings of stigma and shame.⁸ If this observation can be confirmed in quantitative research, it has implications for public health messages about HPV.

This study examined differences in women’s expected responses to testing positive for HPV. Information about the cause and prevalence of the virus was manipulated to test two hypotheses:

1. Women who know that HPV is sexually transmitted will expect to experience higher levels of stigma, shame and anxiety if they test positive for the virus than women who are not aware of the mode of transmission.

2. Women who are aware of the high prevalence of HPV infection will expect to experience lower levels of stigma, shame and anxiety than women who underestimate the prevalence of infection.

RESULTS

Between-group differences in stigma, shame and anxiety

Table 1⇑ shows the number of people in each group who responded positively (ie, with a score of 3–4 out of 4) to each item. χ² tests found differences between groups for all the items on the shame and anxiety scales, and for five of the eight items on the stigma scale.

Total scores were calculated for the three outcome scales: stigma, shame and anxiety. These were standardised to take account of the different number of items in each scale. Figure 1⇓ shows the scores for each outcome for the four knowledge groups.

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Figure 1

 Mean scores for stigma, shame and anxiety for each group, with standard error bars.

One way analysis of variance

One way analysis of variance confirmed that stigma (F_3,807 = 5.31, p = 0.001), shame (F_3,807 = 17.60, p<0.001) and anxiety (F_3,807 = 10.33, p<0.001) all varied between the four knowledge groups.

We used retrospective analyses (Scheffé tests) to examine differences in means between the four groups on each outcome measure, and identify where the between-group differences occurred. Stigma was significantly higher in the “STI only” than in the “Prevalence only” group (mean difference 2.31, p = 0.004). Shame was higher in the “STI only” group than in the “No knowledge”, “Prevalence only” and “STI and prevalence” groups (mean differences were 3.97 (p<0.001), 5.52 (p<0.001) and 1.89 (p = 0.036), respectively). Shame was also significantly higher in the “STI and prevalence” group than in the “Prevalence only” group (mean difference 3.64, p<0.001). Anxiety was significantly higher in the “No knowledge” and “STI only” groups than in the “STI and prevalence” group (mean differences were 2.77 (p<0.001) and 2.38 (p<0.001), respectively).

Two-by-two analysis of variance

A 2×2 analysis of variance was used to look at the effects of knowledge of STI and its prevalence, and to see whether there was an interaction between them. Knowledge of STI was significantly associated with stigma (F_1,807 = 7.70, p = 0.001) and shame (F_1,807 = 44.83, p<0.001) but not with anxiety. Prevalence knowledge was significantly associated with stigma (F_1,807 = 9.18, p = 0.003), shame (F_1,807 = 11.24, p = 0.001) and anxiety (F_1,807 = 27.56, p<0.001). The interaction between the two knowledge variables was not significant for any of the outcomes.

To rule out the possibility that between-group differences might be attributable to demographic factors, we repeated the 2×2 analyses controlling for demographic differences between the groups. There were between-group differences in age (χ²₆ = 13.23, p = 0.04), subject being studied (χ²₆ = 65.17, p<0.001) and previous awareness of HPV (χ²₃ = 94.77, p<0.001), but not in marital status, ethnic group or practising of religion. When the three demographic factors were entered as covariates, the pattern of associations was unchanged.

DISCUSSION

This study was designed to test two hypotheses: (1) women who know that HPV is sexually transmitted will expect to experience higher levels of stigma, shame and anxiety if they test positive than women who are not aware of the mode of transmission; and (2) women who are aware of the high prevalence of HPV infection will expect to experience lower levels of stigma, shame and anxiety than women who underestimate the prevalence of infection. Participants were asked to think hypothetically about testing positive for HPV, and were given varying amounts of information about the virus to ensure that we could divide them according to their knowledge into four groups varying in both prevalence and mode of transmission.

In line with our first hypothesis, awareness that HPV is sexually transmitted was associated with significantly higher levels of stigma and shame, indicating that women respond to HPV in a way similar to other STIs. This is consistent with previous qualitative findings.⁸ However, knowledge of STI did not affect anxiety, and the pattern of results in fig 1⇑ indicates that higher knowledge is associated with lower anxiety: women who were aware of both the prevalence and cause of HPV were the least anxious. Women receiving less information may have focused more on the link between HPV and cervical cancer, so their higher anxiety reflected concerns about cancer rather than HPV or sexual transmission.

We also found support for our second hypothesis; knowledge of prevalence had considerable associations with all three outcome measures, suggesting that the high prevalence of HPV is important information to convey to women undergoing HPV testing. The lower stigma and shame scores in the women who were aware of the high prevalence of HPV suggest that this information might have a “normalising” effect. The lower anxiety in this group is consistent with previous experimental work which has found that common illnesses are perceived as less serious.¹²

The retrospective tests showed important differences between the “STI only” group and the “STI and prevalence” group, with those in the second group having lower scores for shame and anxiety. Also important is the fact that among women who were aware that HPV is highly prevalent, also knowing it to be sexually transmitted was not associated with a significant increase in stigma or anxiety, although shame scores were higher in the group that knew that HPV is sexually transmitted. This supports the importance of ensuring that women are made aware of the high prevalence of HPV, given that they will likely be informed about its mode of transmission.

Provision of information in this study did not correspond precisely to knowledge because some women had prior awareness of HPV and were able to answer the knowledge questions correctly, without having been provided with the relevant information. Some women also answered the questions incorrectly, despite having been provided with the information (11% of those given causal information and 13% of those given prevalence information). This shows that merely providing women with written information is not enough to ensure understanding (even in the short term), especially in an ethnically diverse group like our sample,ⁱⁱ and that further research is needed to find ways of communicating information about HPV effectively.

This study has several limitations. Participants had not actually taken part in HPV testing, so their responses to a positive result were hypothetical. Although this provides an indication of the association between knowledge of HPV and the effect of a test result, we cannot be certain that these results would generalise to a clinical setting. However, the results are consistent with previous qualitative research on women who had tested positive for HPV.⁸ The use of a student sample, and especially one made up largely of science and medical students, may limit the generalisability of the findings. Students are an important group to study, given the high prevalence of HPV infection in young women,¹ but future research might target those from non-medical specialties, which would probably reduce the high awareness of HPV among participants. We may have preferentially recruited women who knew about HPV as the front page of the survey mentioned the virus and may have been disconcerting to those who had not heard of it, but we tried to minimise the effect this might have had by using actual knowledge of HPV to categorise participants for analysis, and by controlling for prior awareness in the analyses.