Women’s views on overdiagnosis in breast cancer screening: a qualitative study
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f158 (Published 23 January 2013) Cite this as: BMJ 2013;346:f158
- Jolyn Hersch, PhD candidate12,
- Jesse Jansen, research fellow12,
- Alexandra Barratt, professor of public health2,
- Les Irwig, professor of epidemiology1,
- Nehmat Houssami, breast physician and associate professor and principal research fellow1,
- Kirsten Howard, professor of health economics1,
- Haryana Dhillon, research fellow2,
- Kirsten McCaffery, associate professor and principal research fellow12
- 1Screening and Test Evaluation Program (STEP), School of Public Health, University of Sydney NSW 2006, Australia
- 2Centre for Medical Psychology & Evidence-based Decision-making (CeMPED), University of Sydney NSW 2006, Australia
- Correspondence to: K McCaffery, Screening and Test Evaluation Program (STEP), School of Public Health, Level 1, Edward Ford Building, A27, University of Sydney NSW 2006, Australia kirsten.mccaffery{at}sydney.edu.au
- Accepted 18 December 2012
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 discussions
Setting Sydney, Australia
Participants 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.
Footnotes
We thank Bruce Armstrong for helpful comments on the draft presentation, the Hunter Valley Research Foundation for recruitment services, Sara Young for transcription services, Paul Glasziou and Jenny Doust for helpful comments on the presentation slides, Lucie Rychetnik and Stacy Carter for helpful discussion regarding the analysis, Ray Moynihan for helpful comments on the draft manuscript, and all study participants.
Contributors: KM conceived the study. KM, AB, JH, JJ, LI, KH, and NH were involved in designing the study and developing the methods. JH, KM, AB, JJ, and LI obtained funding. JH coordinated the running of the study and conducted the focus groups, together with JJ and KM. JH, JJ, and KM read transcripts, developed the analytical framework, and contributed to the analysis. JH drafted the manuscript. All authors contributed to the interpretation of the analysis and critically revised the manuscript. All authors are guarantors.
Funding: This work was supported by a fellowship grant (No 0189-1) awarded to JH from the Informed Medical Decisions Foundation and a grant (No 633003) awarded to the Screening and Test Evaluation Program from the National Health and Medical Research Council of Australia. The funders had no role in the design or conduct of the study; in the collection, analysis, and interpretation of the data; or in the preparation or approval of the manuscript.
Competing interests: All authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf (available on request from the corresponding author) and declare: no support from any organisation for the submitted work; no financial relationships with any organisations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.
Ethical approval: The University of Sydney human research ethics committee approved this study (No 13085). Each participant gave signed consent immediately before the focus group.
Data sharing: No additional data available.
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