Overall, rates of participation in cervical cancer screening were somewhat higher than previously reported
8 (J.K. Tracy, unpublished observations). This is an encouraging finding and may reflect greater awareness of the need for screening among lesbians. Alternatively, higher levels of participation may be reflective of increasing childbearing among lesbians and the cue to be screened that occurs when one is interested in having children. Data from the current study indicate that, similar to the general population of women, minority and less educated lesbians are less likely to participate in screening at recommended intervals. In contrast to the general population, however, lesbians who adhere to screening guidelines are more likely to be older than those who do not adhere. One possible explanation for this difference is the necessity among the heterosexual female general population to obtain annual Pap screening examinations in order to obtain a prescription for oral contraception. Thus, younger heterosexual women likely have this cue to action to adhere to cervical cancer screening guidelines. As the heterosexual population ages and the need for birth control decreases, the cue to action follows suit, and screening rates decline. Although many lesbians report a previous history of sexual relations with men, without the need for birth control, it is possible that the lesbian population does not experience a cue to action for cervical cancer screening until they reach an age where mammography screening is also recommended, suggesting that among this population, cervical cancer screening rates may rise with age. Future studies should explore differences in cervical cancer screening behaviors of lesbians who choose to have children and those who do not have children to evaluate the extent to which participation in this type of gynecological care process affects cervical cancer screening behaviors. Further, efforts should be made in future studies to systematically evaluate the role of physician recommendation for participation in cervical cancer screening.
Although knowledge of risk factors for cervical cancer did not differ for nonroutine and routine screeners in our study, the screening groups did differ in their knowledge of recommended screening guidelines. Nonroutine screeners were less knowledgeable than routine screeners about current screening guidelines, even after adjusting for age, race, and education, indicating that screening behavior among lesbians is related to knowledge of screening guidelines but not knowledge of risk factors. This suggests that information campaigns promoting routine cervical cancer screening among lesbians will have more potent effects by addressing knowledge of screening guidelines instead of knowledge of risk factors.
The present study indicated that lesbians who were nonroutine screeners perceived fewer benefits and more barriers to screening compared with lesbians who were in the routine screener group. These trends were independent of the age, race, and education level of the respondents. Interestingly, nonroutine screeners also perceived themselves as more susceptible to cervical cancer, perhaps because of self-awareness of the risk of not adhering to recommended guidelines for prevention. Belief in the benefits of cervical cancer screening has also been consistently associated with regular screening in the general population.
40Although income data were not directly collected, there was no difference between screening groups with regard to employment or insurance status, potentially indicating a similar overall economic situation for each screening group. Thus, differences in screening are unlikely to be merely a reflection of SES and affordability of screening.
Our study of lesbians provides empirical evidence that lesbians who are nonroutine screeners are more likely than routine screeners to report discrimination because of sexual orientation in a variety of healthcare settings, with the notable exception of the primary care doctor's office. Nonroutine screeners were also less likely than routine screeners to disclose their sexual orientation to their physician or gynecologist or to discuss how sexual orientation may modify their health risks.
Despite significant improvement in Pap screening rates overall, some women do not participate in cervical cancer screening according to recommended guidelines. Sociodemographic and cultural factors associated with underuse of cervical cancer screening in the general population include age, race/ethnicity, educational background, and economic status. In contrast to young women, older women obtain Pap screening examinations at lower rates.
41 Analysis of data from the National Health Interview Survey (NHIS) found that nearly one half of women aged 50–64 years did not obtain a Pap smear in the preceding 3 years.
42 Cervical cancer screening rates for women from minority groups are consistently below the rates of nonminority women.
43–45 Using data for self-reported Pap screening behavior from the Behavioral Risk Factor Surveillance System (BRFSS), Coughlin et al.
46 found that women from minority racial/ethnic groups, lower education level, and lower income or the unemployed were less likely to participate in screening.
Women's knowledge and attitudes about screening also appear to be related to cervical cancer screening behavior in the general population. Many studies have shown a relationship between knowledge related to cervical cancer risk factors and screening guidelines and adherence to recommended screening guidelines. Knowledge of risk factors associated with cervical cancer tends to be higher among women who participate in regular cervical cancer screening. In secondary analysis of data collected as part of the Cancer Control Supplement of the NHIS, Pearlman et al.
47 noted that knowledge of risk factors related to cervical cancer was an important barrier to women's participation in regular cervical cancer screening. Behbakht et al.
48 analyzed differences between women with cervical cancer who were previously screened compared with women with cervical cancer who had not been screened and noted that women who had not been screened before their diagnosis lacked knowledge about their risk for cervical cancer. This stands in contrast to the finding in our study of lesbians that knowledge of cervical cancer risk factors was comparable between screening groups.
Reasons for not participating in routine cervical cancer screening have not been well studied in lesbians. A review of the scientific literature revealed a paucity of research related to any aspect of cervical cancer in lesbians.
49 A single study has provided some evidence that lesbians perceive themselves to be less susceptible to cervical cancer than heterosexual women,
50 although this finding has not been empirically confirmed. Other factors have been proposed as potential barriers to routine cervical cancer screening in lesbians. These include experiences of discrimination and homophobia in the healthcare system, lack of health insurance, and fewer cues to action, such as contraceptive needs, that might otherwise trigger routine gynecological care.
28Additional barriers to participation in routine cervical cancer screening may include lack of healthcare providers' knowledge of disease risk in this population, providers' failure to obtain a complete sexual history from lesbians, and lesbians' lack of willingness to disclose sexual orientation to care providers.
5,6,51–53 Although these factors have been offered as possible explanations for lesbians' low rates of adherence to recommended cervical cancer screening guidelines, few studies have directly evaluated these hypothesized associations empirically in lesbians or care providers of lesbians.
Although it is probable that components of successful interventions among presumably heterosexual women are appropriate to use when targeting the lesbian population, the unique challenges faced by this group require a customized approach. The data presented here indicate several ways in which public health interventions may need to be modified to promote cervical cancer screening and improve adherence to cervical cancer screening guidelines among lesbians. Perceived benefits and barriers to screening should be targeted, as these predictors remained even after controlling for age, race, and education. Interventions targeted to lesbians should address the benefits of screening and offer strategies for overcoming barriers. In addition, our screening groups did not differ with respect to their knowledge of risk factors for cervical cancer; however, the groups did differ in their understanding of current guidelines for cervical cancer screening. Consequently, an information campaign directed to lesbians as the target population would be most effective in promoting screening if focused on providing information on screening guidelines rather than providing information about risk factors. Unique predictors of nonadherence to screening recommendations among lesbians were discrimination because of sexual orientation when interacting with healthcare systems and lack of disclosure of sexual orientation to a healthcare provider. Effective intervention strategies for this group of women should encourage positive and productive interactions with the healthcare community; such interventions may be most effective when targeted both to lesbians as the target population and to care providers. Future studies may advance these findings by exploring the extent to which healthcare provider attitudes contribute to cervical cancer screening practices of lesbians.
An issue that was beyond the scope of this report but that warrants further study in future investigations is that of the relation between sexual behaviors, including sexual histories with male and female partners and the perception of risk for acquiring HPV and cervical cancer. Incorporation of these types of questions into the evaluation of barriers to screening may reveal valuable information on the decision-making processes related to cervical cancer screening. Specifically, future studies that incorporate collection of sexual history data and risk perception may help disentangle the complex ways in which previous sexual behavior affects risk perception and subsequent screening behavior.
Limitations
This study presents important findings related to cervical cancer screening knowledge, attitudes, and beliefs among lesbians, but it is not without shortcomings. First, our survey relied on self-report for categorizing women as routine or nonroutine screeners. Although there is evidence in the extant literature that women tend to overestimate their adherence with cervical cancer screening,
54 others
55 have suggested that self-report offers a reasonable approximation of cervical cancer screening behavior. Future studies of this important issue should attempt to reduce this source of potential bias by validating self-report data with provider confirmation.
Although use of an Internet-based survey for this type of study represents an improvement over the methods used historically to recruit hidden populations in general and lesbian respondents, specifically (e.g., recruitment through gay bars, gay social organizations, other social gatherings of convenience), it is possible that the use of this method contributed to recruitment of a more select sample. A degree of comfort with technology was required in order to navigate the web survey. Lesbians who were less comfortable with computer and Internet use were less likely to be recruited for the study. The consequence of this is that generalizability of results may be limited; therefore, the findings reported herein may not be representative of all lesbian women.
Given the preliminary nature of this investigation, caution should be exercised when generalizing its results. Although it was our intention to recruit a geographically and demographically diverse sample, our participants were recruited via nonprobability sampling techniques, and the sample is somewhat select. We achieved a level of geographic and sociodemographic variability within the sample respondents; however, in general, our sample was highly educated (a large proportion had at least some college education) and had some form of insurance; the racial and ethnic diversity of respondents was also somewhat limited. It was noteworthy, however, that 28% of respondents had no health insurance; this is nearly twice the rate of being uninsured reported for the general population and suggests that a notable proportion of respondents were not of middle or upper SES. Findings from this study should be interpreted with caution, as they may not generalize to samples that are more varied with respect to sociodemographic characteristics.
Alison D. Lydecker, M.P.H., and Lynda Ireland, B.S.
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