In this nationally representative sample, 71% of recently unscreened women who saw a provider in the prior year did not report receiving a recommendation for mammography. Overall, 12% of recently unscreened women had increased breast cancer risk by Gail score (an estimated 1.15 million women nationally) and 25% of high-risk women reported a screening recommendation.
Our findings indicate that an estimated 9.4 million women nationwide in this age group who saw a provider in the prior year have not been recently screened (of an estimated 45.6 million U.S. women without cancer in this age range). This is a conservative estimate because we did not include women with cancer or missing information about provider recommendation. Less than one-third of recently unscreened women studied recalled a screening recommendation, despite a recent provider visit. Among women 50 years or older, the result was similar. In a 1991 study, 52% of women over age 50 years with no mammogram in the previous year reported ever receiving a physician recommendation.7
In another study, screening recommendations were given during 48% of visits by never screened women presenting for nonacute care.15
Differences among studies may reflect differences in samples, interval since recommendation, temporal change or other factors. However, our findings and others' suggest that many unscreened women report no mammography recommendation, even when in contact with providers.
Our findings also suggest that there are many recently unscreened, high-risk women (12%), and most did not report a provider recommendation for screening. Furthermore, risk was not associated with reported recommendation in this population. We found this to be so whether risk was assessed by Gail score or individual factors, except age, that might be more recognizable. One possible explanation is that women may fail to recognize personal risk and therefore not discuss risk with providers. Evidence suggests that women are more likely to receive a recommendation during visits where they request a mammogram.15
Although high-risk women in our study more often perceived high risk for developing cancer than average-risk women, only 15% of high-risk women perceived high risk, while 54% perceived low risk. Inaccuracy in risk perception among high-risk women is consistent with other studies.4,29
Despite this, risk perception was not associated with reported recommendation among recently unscreened women, and in another study differences in screening between risk groups were not explained by cancer risk perception.4
However, more than 40% of high-risk women reported the main reason they were not screened was “no reason/never thought about it” or “didn't need/know I needed it,” suggesting many recently unscreened, high-risk women may be unaware of their risk and the potential role for mammography.
Another possibility is that providers may not recognize risk. This may be consistent with studies of breast cancer risk assessment suggesting providers may inaccurately assess risk, inconsistently ascertain or consider some risk factors,30–34
and may not feel confident counseling about cancer risk.35
As above, the main reasons many high-risk women in our study were not screened were lack of doctor's order, not thinking about it or knowing they needed it. This could reflect lack of awareness of risk or poor risk communication by providers. We are unaware of other studies evaluating risk and recommendation among recently unscreened women, although studies including screened women showing no association between risk and recommendation6,11,18
also raise this possibility. However, others note a relationship between risk and recommendation,15–17
and in one study high-risk women were more likely to undergo screening than average-risk women,4
suggesting providers may consider risk when counseling about screening. Possible explanations for these discrepancies include variation among physicians in identifying and counseling high-risk women, or variation among women in recalling counseling.
The lack of association between risk and recommendation could reflect similar recommendations to women despite awareness of risk. This also could be consistent with the lack of association between risk and recommendation found in some studies of screened and unscreened women,6,11,18
although not in others.15–17
Moreover, many guidelines advise screening for all women starting at age 40 years.22–25
Therefore, providers may not tailor screening based on a woman's known risk status. However, several organizations suggest that clinical judgment and consideration of risk may influence some screening decisions.22–25
Similarity in reported recommendations between risk groups might also reflect differences in compliance. High-risk women may more likely adhere to a recommendation when they receive one. Since our study included only recently unscreened women, those reporting a recommendation, by definition, did not adhere to it. Although not significant, one study found that women with prior biopsy were more likely to adhere to recommendations.14
Because questions about provider recommendations in NHIS were only asked of unscreened women, we were unable to explore this possibility. This is a potential area for future research.
As in studies including screened women,6,8,11,18
lower income was related to lower rates of recommendation or discussion, possibly because providers may be less likely to order mammography if they perceive cost will be a problem.35
Consistent with others,18
our findings concerning provider type may reflect the number of providers seen, and therefore the number of opportunities to receive a recommendation, rather than specialty. We observed no differences across specialties unlike some studies,11,17,18
although whether this reflects differences in samples is unknown.
We also detected increased reported recommendations among northeastern women compared with southern women. Other studies suggest that geographic variation exists in breast cancer screening36
and provider counseling about colorectal cancer screening.37,38
Nonsignificant increases in provider recommendation for cervical cancer screening among recently unscreened women in the northeast compared with the south have been reported as well.39
Regional differences might represent variations in practice structure or systems, provider behavior or patient populations. Northeastern women remained more likely to report recommendations when we restricted our analysis to women 50 years or older, suggesting this difference unlikely reflects varying approaches to screening women in their forties.
Our findings should be interpreted in light of several limitations. We used self-reported data to identify eligible women, and therefore some misclassification may have occurred. However, evidence suggests that recall is a reliable measure of cancer screening.40,41
Furthermore, we have no information about whether recommendations were actually given, although screening behavior may more likely reflect women's perceptions of counseling than the actual content of discussions. Additionally, we have no information about reasons for visits. Women presenting for annual visits may be more likely to receive screening recommendations than other women.15,42
Also, NHIS questions about provider recommendation were only asked of women not screened within 2 years, which limits generalizability. Finally, the Gail model has only been validated for white women, and may overestimate risk for some younger women not regularly screened. The modified Gail model however has been suggested to be less susceptible to inaccuracy in risk estimation resulting from differences in screening, and may be more appropriate for populations not screened regularly.43
Given our sample however, some risk misclassification may have occurred.
In summary, findings from a nationally representative dataset conservatively suggest an estimated 9.4 million women ages 40 to 75 years recently seen by a health care provider have not had a mammogram within 2 years. Twelve percent of these women had increased breast cancer risk, and more than 70%, regardless of risk, reported no screening recommendation. Further research is needed to examine whether reported recommendation reflects actual recommendation, why some women do not adhere to recommendations, and if the similarity in reported recommendations rates between risk groups reflects unrecognized risk by women or providers, or other reasons. To the extent that it reflects unrecognized risk, efforts to educate providers and/or women about risk and risk assessment may improve screening recommendation rates and facilitate informed decision-making about screening. In general, increasing reported recommendation rates, either by increasing provider recommendation or by improving women's understanding and recall of counseling, may represent an opportunity to increase screening participation among recently unscreened women, particularly for women with increased risk.