Women's views on overdiagnosis in breast cancer screening: a qualitative study

Abstract

Objective To elicit women’s responses to information about the nature and extent of overdiagnosis in mammography screening (detecting disease that would not present clinically during the woman’s lifetime) and explore how awareness of overdiagnosis might influence attitudes and intentions about screening.Design Qualitative study using focus groups that included a presentation explaining overdiagnosis, incorporating different published estimates of its rate (1–10%, 30%, 50%) and information on the mortality benefit of screening, with guided group discussionsSetting Sydney, AustraliaParticipants Fifty women aged 40–79 years with no personal history of breast cancer and with varying levels of education and participation in screening.Results Prior awareness of breast cancer overdiagnosis was minimal. Women generally reacted with surprise, but most came to understand the issue. Responses to overdiagnosis and the different estimates of its magnitude were diverse. The highest estimate (50%) made some women perceive a need for more careful personal decision making about screening. In contrast, the lower and intermediate estimates (1–10% and 30%) had limited impact on attitudes and intentions, with many women remaining committed to screening. For some women, the information raised concerns, not about whether to screen but whether to treat a screen detected cancer or consider alternative approaches (such as watchful waiting). Information preferences varied: many women considered it important to take overdiagnosis into account and make informed choices about whether to have screening, but many wanted to be encouraged to be screened.Conclusions Women from a range of socioeconomic backgrounds could comprehend the issue of overdiagnosis in mammography screening, and they generally valued information about it. Effects on screening intentions may depend heavily on the rate of overdiagnosis. Overdiagnosis will be new and counterintuitive for many people and may influence screening and treatment decisions in unintended ways, underscoring the need for careful communication.

Use of a decision aid including information on overdetection to support informed choice about breast cancer screening: a randomised controlled trial

“…Qualitative studies suggested that most women learning of the risk of overdetection felt it was outweighed by screening benefits. 13,14 Some focus group participants, however, were concerned about overdetection and screening in light of the new information, especially younger women (40-50 years). 13 These qualitative results are consistent with our trial"s finding that overdetection information prompted a small proportion of women to reconsider screening.…”

“…13,14 Some focus group participants, however, were concerned about overdetection and screening in light of the new information, especially younger women (40-50 years). 13 These qualitative results are consistent with our trial"s finding that overdetection information prompted a small proportion of women to reconsider screening. Lower worry about breast cancer in the intervention group, with no difference in perceived risk, corresponds with our qualitative finding 13 that some women believed awareness of overdiagnosis might help women feel less afraid of a breast cancer diagnosis.…”

“…25,26 Decision aid content and presentation were guided by our earlier qualitative study. 13 We developed and revised the materials based on input from layperson collaborators and independent experts as well as a thorough piloting process. 18 availability) collected demographics, stage of decision making about breast screening, basic conceptual knowledge, 28 attitudes, 29 and intentions.…”

“…In qualitative studies, screening-eligible women were unaware of overdetection but could understand the concept, valued information, and considered it important to make informed decisions. 13,14 As yet, there is no randomised trial evidence addressing whether overdetection information can improve the quality of women"s decisions about starting screening.…”

Were Our Estimates of Overdiagnosis With Mammography Screening 
in the United States “Based on Faulty Science”?

“…Most patient-educationaids donot even mention overdiagnosis, and most women are not aware of its possibility. A recent poll in Australia demonstrated how little women in Sidney suburbs knew about overdiagnosis associated with screening mammography [57]. Effective communication about overdiagnosis of breast cancer will require great care-and evaluation to determine how best to do it; otherwise, women may become fearful or angry.…”