For many women with HIV and their HIV uninfected peers, knowledge gaps can pose a barrier to engaging in cervical cancer prevention programs. Most women in our study did not know correct answers to questions about several fundamental aspects of cervical cancer prevention, including the concept that Pap testing evaluates the cervix. This result was unanticipated. On the one hand, our participants came predominantly from lower socioeconomic and educational backgrounds [23
], factors that have predicted lower awareness of HPV and cervical cancer prevention processes [15
]. On the other hand, WIHS participants had personal experience of semiannual Pap testing. Most had abnormal Pap results. All had opportunities to learn about HPV and cervical cancer prevention through newsletters, peer education, and staff contact after abnormal Pap results. Women with prior abnormal Pap tests knew more about cervical cancer prevention, but only marginally so. In high-risk populations like ours, unstructured encounter-based education may be insufficient to raise understanding of cervical cancer risks and prevention strategies. Culturally tailored educational interventions designed to improve compliance with screening, treatment, and vaccination among women like those we studied will need to incorporate basic information about genital anatomy and the natural history of cervical disease. Women with less than a high school education have the greatest knowledge deficits and merit particular outreach.
Most participants learned about HPV vaccination from advertising and news, not WIHS researchers or clinicians, but the substantial knowledge gaps we found suggest that media may communicate messages incorrectly or incompletely to low-income women of color. The importance of ethnicity, income, and quality of education in predicting knowledge suggests that educational messages should be culturally specific. Research is needed to determine whether more tailored education from clinicians, such as multimedia approaches incorporating visual and auditory aids, might improve women’s understanding of cancer prevention and if so whether better understanding leads to better compliance.
Our study was novel in incorporating psychometric assessments. These included measures of sustained attention, mental speed, reading as a proxy for education, and depressive symptoms. Multivariable analysis showed that all but depressive symptoms were significant contributors to the level of knowledge about cervical cancer prevention and HPV, and future studies in these areas should incorporate them. Unfortunately, models combining these factors with nominal years of education and proxies for cultural factors like income and ethnicity failed to explain much of the variability in knowledge. Unmeasured factors, such as the perceived reliability of the information source, may be important and deserve further exploration. Nevertheless, some women, such as those who do not know what a cervix, a cell, or a cancer is, may have knowledge deficits that cannot be addressed readily in brief clinical encounters or educational campaigns. In fact such efforts may be counterproductive if exposing knowledge deficits erodes women’s self-worth and desire to pursue cancer prevention. For these women, efforts focused on developing trust may be more effective in improving compliance with prevention measures than educational outreach. Appropriately educated HIV seropositive women may make effective peer counselors for women needing such support, as participants frequently indicated that they considered HPV vaccination an important measure against cervical cancer and would recommend vaccination to female relatives and friends. Whether vaccination is safe or effective for HIV-infected women is the subject of ongoing trials.
Results from our study were broadly congruent with recent research on knowledge and attitudes regarding cervical cancer prevention, HPV, and HPV vaccination. For example, a recent review found that 8–68% of women asked closed-ended questions could identify the link between HPV and cervical cancer [22
]. A focus group study conducted by the Centers for Disease Control in 2002–3 found that women preferred to receive information about HPV from sources that were trustworthy, accessible, convenient, and confidential; while they preferred clinicians as information sources, we found that many of our participants had received their information from media and advertising [31
Our study was limited by several factors. First, women from similar socioeconomic backgrounds but irregularly screened may have even lower levels of understanding of cervical cancer prevention, HPV, and HPV vaccination than our participants. Second, since this study was nested in a larger study of other health outcomes, restricting time availability, we used multiple choice testing. Knowledge may be lower when measured without prompting [21
] and using open-ended questions [20
]. Third, because WIHS is a comprehensive study of multiple health outcomes with limited time at each visit, measures of vocabulary and cognitive function were administered at different visits, potentially limiting the strength of correlations. Fourth, because we excluded women who spoke only Spanish from analyses, conclusions may not apply to less acculturated Latina women. Fifth, our findings may not reflect those of young women or those from the South, who are underrepresented in WIHS. Finally, our study was conducted as HPV vaccine marketing was initiated; ongoing marketing of HPV vaccines has likely increased awareness of HPV and cervical cancer prevention [32
], and we recently completed a follow-up survey to assess how knowledge is evolving.
In addition to education about cervical cancer prevention processes, HPV education is important because an HPV diagnosis can induce feelings of anxiety, shame, and stigmatization, which actually may be stronger among women who are knowledgeable about HPV [33
]. Understanding the near-ubiquity of HPV infection may reduce these reactions [33
]. However, improving knowledge may not lead to behavior change. For example, among parents with vaccine-eligible daughters, an HPV education sheet improved knowledge about HPV but did not alter willingness to consider vaccination [34
]. We plan follow-up studies to assess the impact of an HPV-related educational intervention on knowledge scores and colposcopy compliance among women with abnormal Pap tests.