Major Finding: Many women did not know their cancer's ER status (26%), whether they had had lymph nodes removed (16%), and all of the chemotherapy drugs they had received (44%). But most (88%) nonetheless believed they could clearly communicate their treatments to health care providers.
Data Source: A cross-sectional survey of 490 women who had completed primary treatment for stage 0-III breast cancer.
Disclosures: Dr. Mao reported that he had no relevant financial disclosures.
SEATTLE – Many women who have had early breast cancer don't know key treatment facts that may have implications for their long-term follow-up and health, according to a survey of cancer survivors.
Among nearly 500 respondents who had completed primary treatment, one in four didn't know their cancer's estrogen receptor (ER) status, and one in six didn't know whether they had had any lymph nodes removed. In addition, nearly half of those who had undergone chemotherapy were unable to correctly identify all of the agents they had received, according to survey results.
Yet when asked questions about their perceived self-efficacy in navigating survivorship care, most of the women believed that they could clearly communicate their treatments to health care providers outside their oncology clinic, reported Dr. Jun James Mao.
“We need to begin designing interventions to allow the accurate transfer of cancer treatment information, as well as to promote self-efficacy among a diverse group – especially among individuals who are particularly vulnerable to health disparities, such as racial/ethnic minorities and elderly patients,” noted Dr. Mao, director of integrative medicine at the Hospital of the University of Pennsylvania, Philadelphia.
The investigators surveyed women from the university's outpatient breast cancer oncology clinic who were participating in a study of aromatase inhibitors. All had stage 0-III breast cancer, had completed primary treatment, and were taking one of those agents. The women were classified as knowing a given aspect of their cancer or treatment if their response on the questionnaire matched the information in their chart. They were classified as not knowing if they answered that they did not know or if their response did not match the chart information.
The mean age of the 490 participating women was 62 years. In all, 82% of participants were white, 14.5% were black, 1.8% were Asian, 1% were Hispanic, and the rest were of other races/ethnicities. The majority had a college education (43%) or graduate/professional education (36%). About a third each had received their diagnosis less than 2 years, 2-5 years, and more than 5 years in the past.
Study results showed that substantial proportions of women did not know their breast cancer stage (49%), ER status (26%), progesterone receptor status (75%), HER2 status (58%), whether they had had lymph nodes removed (16%), and whether they had any positive lymph nodes (15%). Only 5% did not know if they had received chemotherapy. Among the group of patients who underwent chemotherapy, nearly half (44%) did not know all of the agents they had received, although the value was somewhat lower (21%-29%) for individual agents. That finding is “strongly troubling,” Dr. Mao said, given that “chemotherapy is one of the greatest sources of long-term late effects.”
Of particular note, despite the gaps seen in knowledge about treatment, 88% of the women agreed or strongly agreed that “I can communicate clearly about my cancer treatment(s) to other health care providers.”
“One of the most striking differences we found was the racial/ethnic difference in cancer knowledge and self-efficacy,” Dr. Mao noted. In multivariate analyses, relative to their white counterparts, women who were not white had significantly lower scores for knowledge (14.5 points lower) and self-efficacy (13.5 points lower).
In addition, women had lower levels of knowledge if they were older, had less education, received chemotherapy, or were a longer time out from diagnosis. And they had lower levels of self-efficacy if they were older and less educated.