Understanding why some latina women discontinue participation in cancer prevention outreach
It has long been known that rates of breast and cervical cancer screening among Latinas are low compared to rates for U.S. women overall. A study led by researchers at Roswell Park Cancer Institute (RPCI) found that age and fear of cancer diagnosis are among the reasons why Latina women do not continue participation following breast and cervical cancer education programs. The research was published in the Journal of Health Communication: International Perspectives.
This research is a secondary analysis of a large randomized, controlled study reported earlier and was designed to specifically understand the characteristics of women who were lost to attrition for follow-up telephone calls following participation in the multisite, peer-led education program Esperanza y Vida (EyV).
Esperanza y Vida aims to address the low rates of breast and cervical cancer screening in the diverse Latina population and offers cancer screening information and education in community settings delivered by lay health advisers and sobreviventes (cancer survivors). A narrative from the sobreviventes incorporates personal experiences to promote learning and increase self-efficacy for pap and mammography screenings.
In that earlier EyV intervention study, a participant was considered lost to follow-up if, for example, she did not provide a telephone number at registration, declined to complete the follow-up questions, or did not have a working telephone number. The secondary analysis only examined attrition at two months, as women lost to follow-up at this time were dropped from further analysis. Of the 908 Latina women who participated in the cancer education program and consented to follow-up, 76% were retained at the two-month follow-up assessment.
"Participant loss to follow-up represents a potentially important source of bias in research studies," says Deborah Erwin, PhD, Principal Investigator of the study and Director of the Office of Cancer Health Disparities Research at Roswell Park. "These findings are underscored by the fact that while there was a very high response rate for follow-up assessment two months after the program (77%)—especially for a group that includes many non-English-speaking, foreign-born women—unscreened women at that time could receive navigation assistance for screening, and the women lost to follow-up (23%) may remain unscreened without additional assistance."
Analysis of the data found that Latinas lost to attrition at the two-month follow-up assessment included women who were younger than 40 years of age (59.6%; most women in this group were ineligible for mammograms, but eligible for pap tests); those who felt that hearing a survivor's story would lead them to make an appointment for preventive screening (17.6%); and women who were afraid of hearing medical results (43.2%). More research would be required to determine whether the group of women impacted by a survivor's personal experiences went on to obtain screening on their own. The large share of women who were concerned about hearing medical results and who were no longer participating in the study demonstrates the continued need to address fears and emotional issues around screening.
"Knowing more about the reasons behind attrition characteristics provides insight for future studies," adds Dr. Erwin. "These findings contribute to the literature regarding the recruitment and retention of minorities, specifically Latinas and newer immigrants, in research studies, as well as to how attrition and the ability to follow up with Latina women of varying ages are understood."