How do we achieve informed choice for women considering breast screening?

doi:10.1016/j.ypmed.2011.06.013

Preventive Medicine

Volume 53, Issue 3, 1 September 2011, Pages 144-146

https://doi.org/10.1016/j.ypmed.2011.06.013 Get rights and content

Abstract

Objective

In current medical literature, mammography and other cancer screening programs are subject to controversy because of debate about the magnitude and nature of the benefits and harms. This paper discusses the issues around informed choice for women considering breast screening.

Method

We discuss qualitative and quantitative studies of women’s attitudes to breast screening and informed choice.

Results

Women view breast screening as a way of avoiding potential regret, and reassurance from normal results is highly valued. Screening participants acknowledge anxiety about false positives but awareness regarding potential overdetection of indolent breast cancer is minimal, and research is needed to assess how better understanding of screening downsides may affect women’s views. In any case, weighing up screening advantages and disadvantages is sensitive to personal preferences.

Conclusions

Communicators have an ethical obligation to make balanced information available to women, which is flexible enough to respond to the level of detail and involvement desired by each individual. Many women want to know more and to participate more actively in screening decisions. Techniques have been developed to present balanced information and support individual decision making in ways that are accessible and empowering for the wider community. Evaluations of breast cancer screening must integrate clinical data with evidence on the perspectives of women themselves.

Highlights

► Breast screening is controversial because of debate about the benefits and harms. ► Weighing up screening advantages and downsides is sensitive to personal preferences. ► Balanced information should be made available to women considering breast screening. ► Techniques exist to present balanced information and support women making decisions. ► Breast screening evaluations must integrate clinical data with women’s perspectives.

Section snippets

Conclusion

Historically the dominant approach to informing people about cancer screening has emphasised benefits in order to promote uptake, in line with screening programme objectives of achieving participation targets. However, we now know that many women want to be offered the opportunity to make their own informed decision about undergoing screening mammography, for which there is an ethical imperative to provide access to information about both benefits and potential harms. Continuing effort is

Conflict of interest statement

The authors declare that there are no conflicts of interest.

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Cited by (37)

A systematic review of decision aids for mammography screening: Focus on outcomes and characteristics
2021, International Journal of Medical Informatics
Citation Excerpt :
Moreover, these challenges could be categorized either as encouragement or as barrier challenges. Encouragement challenges comprise the programs and advertisements for mammography screening in developed countries, free of charge mammography in some countries, persuading women by emphasizing the advantages of mammography and not mentioning the disadvantages, patients’ positive opinion on mammography, and high sensitivity of the screening [26–30]. The barrier challenges include lack of knowledge and information on BC screening; high costs of mammography services; fears of mammography results, chemotherapy, and being exposed to the radiation; fears of losing family supports and destruction of marriage life; feeling embarrassed of male doctors; self-denial; issues in centers providing screening such as busy centers and long wait times for getting an appointment; cultural issues such as confidence in nontraditional cancer treatments and preferring local and conventional curers; religious issues such as belief in fatalism and inability to change fate; and negative experiences from past mammography screenings [25,31–36].
Decision Aid systems (DAs) provide information on the pros and cons of mammography. This study aimed to review the research on mammography DAs, synthesize the findings related to their outcomes and characteristics, and address the existed research gap.
Relevant studies were identified through a comprehensive search on some e-databases, including PubMed, EMBASE, Scopus, and Web of Science in August 2020; by searching the keywords of “Breast cancer”, “Screening”, and “Decision aid systems” as well as their synonyms in the titles and abstracts of the papers with no time limits. Among the selected English journal papers with the interventional study design, those measuring outcome values of using mammography DAs were recognized as eligible for being included in this review.
The systematic search results in 16 DAs regarding mammography that were designed and then evaluated from 18 selected studies. The results showed that DAs provide improvements in knowledge and informed choice, the decreased decisional conflicts and decisional confidence, almost without changing any attitude towards mammography, mammography participation rates, psychological issues, anticipated regret, and perceived risk of breast cancer. The DAs' effects on women’s inclination to screening were divergent. In other words, the DAs affect individuals’ inclination in rare cases; however, on occasion, they could affect women’s decision to undergo screening.
DAs could correct the bias attached to the existing knowledge on mammography and breast cancer in women so that they are more likely to make a precise decision. Additionally, it might be of central importance in shared decision-making and assisting health providers, in order to promote the quality of care. Accordingly, performing more studies is needed to develop more professional DAs in various countries with different facilities, cultures, and languages.
‘I just want to be able to make a choice’: Results from citizen deliberations about mammography screening in Ontario, Canada
2018, Health Policy
Despite Canada’s long history with mammography screening, little is known about citizens’ perspectives about mammography and how best to support women to make informed choices about screening. To address this gap, a series of four citizen deliberation events were held in 2015-16 in Ontario, a Canadian province with an organized population-based breast screening program in place since 1990. Forty-nine individuals participated in four citizen panels, each comprising an information session highlighting the evidence about mammography, and large- and small-group deliberations about approaches to support informed decision making for screening. Following their engagement with the research evidence about mammography, participants expressed concern about their lack of full awareness of the risks and benefits and a strong desire for choice when it comes to screening. To support informed choice, mammography programs need to reflect the values of information sharing, trust and transparency, financial accountability, and allow for personal interactions and shared decision-making. Citizens are looking for balanced information about the risks and benefits of screening presented in an easy to understand, comprehensive, and transparent manner. Primary health care providers and organized screening programs are important sources of information about mammography and must be vigilant in their efforts to support informed decision-making in this area by ensuring that the information materials they are using are balanced and reflect current evidence.
A Systematic Review of Women's Knowledge of Screening Mammography
2018, Breast
Citation Excerpt :
The confusion associated with overdiagnosis, and over-estimations of mortality efficacy, are common [18; 64]. Some suggest this may be a result of positively-biased information accessible to women [25,65]. However, there were two topics where women's understanding aligned with research findings—that the harm from radiation is likely to be low and that screening is only indicated for asymptomatic women [66,67].
In light of the contention surrounding the benefit-to-harm ratio of screening mammography, this systematic review aimed to understand women's knowledge of screening mammography. The search yielded 35 studies of varying methodologies, published/completed between 1992 and 2017. Data was collected between November 2017 and February 2018 and utilised publications from member countries of the International Cancer Screening Network- Breast Cancer Division. Data was analysed using a narrative synthesis. The results of the review suggest that most women are aware of mammograms, however there was large variability regarding the awareness of false positives/negatives and about the purpose of screening. Some topics (e.g. radiation, commencement age) are well understood by women; however, others are not (e.g., cessation age, overdiagnosis, and mortality reduction). The findings need to be considered in light of the variability of methods used to assess women's knowledge and there is a need to develop psychometrically validated and culturally appropriate measures of knowledge regarding screening mammography. Further, the lack of consensus regarding what women ‘should’ know in order to provide informed consent has implications for understanding what informed consent in breast screening means in practice.
Nudging in screening: Literature review and ethical guidance
2018, Patient Education and Counseling
Nudging is the purposeful alteration of choices presented to people that aims to make them choose in predicted ways. While nudging has been used to assure high uptake and good outcome of screening programs, it has been criticized for being paternalistic, undermining free choice, and shared decision making. Accordingly, the objective of this study is to explore a) nudging strategies identified in screening, b) arguments for and against nudging; and on basis of this, to c) suggest a tentative conclusion on how to handle nudging in screening.
Literature searches in Ovid MEDLINE and PsycINFO for combinations of screening and nudging. Screening based on content analysis of titles, abstracts, and articles.
239 references were identified and 109 were included. Several forms of nudging were identified: framed information, default bias, or authority bias. Uptake and public health outcome were the most important goals. Arguments for nudging were bounded rationality, unavoidability, and beneficence, while lack of transparency, crowding out of intrinsic values, and paternalism were arguments against it. The analysis indicates that nudging can be acceptable for screenings with (high quality) evidence for high benefit-harm ratio (beneficence), where nudging does not infringe other ethical principles, such as justice and non-maleficence. In particular, nudging should not only focus on attendance rates, but also on making people “better choosers.”
Four specific recommendations follow from the review and the analysis: 1) Nudging should be addressed in an explicit and transparent manner. 2) The means of nudging have to be in proportion to the benefit-harm ratio. 3) Disagreement on the evidence for either benefits or harms warrants special care. 4) Assessing and assuring the intended outcome of nudging appears to be crucial, as it can be context dependent.
From facts to arguments: A study of the 2014 Swiss controversy over systematic mammography screening
2018, Patient Education and Counseling
The Swiss Medical Board (SMB) has recently revived the controversy over mammography screening by recommending to stop the introduction of new systematic mammography screening programs. This study aimed to examine the Swiss media coverage of the release of the SMB report.
The dataset consisted of 25 newspaper and “medical magazine” articles, and TV/radio interviews. The analytic approach was based on argumentation theory.
Authority and community arguments were the most frequent types of arguments. With respect to authority arguments, stakeholders for instance challenged or supported the expertise of the SMB by referring to the competence of external figures of authority. Community arguments were based on common values such as life (saved thanks to systematic mammography screening) and money (costs associated with unnecessary care induced by systematic mammography screening).
The efficiency of mammography screening which was the key issue of the debate appeared to be largely eluded, and the question of what women should do endures.
While interpersonal and interprofessional communication has become a major topic of interest in the medical community, it appears that media communication on mammography screening is still rather ineffective. We call in particular for a more fact-based discussion.
Including values in evidence-based policy making for breast screening: An empirically grounded tool to assist expert decision makers
2017, Health Policy
Values are an important part of evidence-based decision making for health policy: they guide the type of evidence that is collected, how it is interpreted, and how important the conclusions are considered to be. Experts in breast screening (including clinicians, researchers, consumer advocates and senior administrators) hold differing values in relation to what is important in breast screening policy and practice, and committees may find it difficult to incorporate the complexity and variety of values into policy decisions. The decision making tool provided here is intended to assist with this process. The tool is modified from more general frameworks that are intended to assist with ethical decision making in public health, and informed by data drawn from previous empirical studies on values amongst Australian breast screening experts. It provides a structured format for breast screening committees to consider and discuss the values of themselves and others, suggests relevant topics for further inquiry and highlights areas of need for future research into the values of the public. It enables committees to publicly explain and justify their decisions with reference to values, improving transparency and accountability. It is intended to act alongside practices that seek to accommodate the values of individual women in the informed decision making process for personal decision making about participation in breast screening.

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View full text

How do we achieve informed choice for women considering breast screening?

Abstract

Objective

Method

Results

Conclusions

Highlights

Section snippets

Conclusion

Conflict of interest statement

Patient Educ. Couns.

Aust. N. Z. J. Public Health

Patient Educ. Couns.

Patient Educ. Couns.

Health Policy

Int. J. Radiat. Oncol. Biol. Phys.

Patient Educ. Couns.

BreastScreen Australia: participation qualitative study

Screening monograph no.3/2009

Users' guides to the medical literature: XVII. How to use guidelines and recommendations about screening. Evidence-based medicine working group

JAMA

Decision aids and uptake of screening

BMJ

Variability in women's desire for information about mammography screening: implications for informed consent

Eur. J. Cancer Prev.

Communicating about screening

BMJ

Consent: patients and doctors making decisions together

Screening for breast cancer with mammography

Cochrane Database Syst. Rev.

Mammography decision making in older women with a breast cancer family history

J. Nurs. Scholarsh.

Are women getting relevant information about mammography screening for an informed consent: a critical appraisal of information brochures used for screening invitation in Germany, Italy, Spain and France

Eur. J. Public Health

Informed consent for screening by community sampling

Eff. Clin. Pract.

Informed choice for screening: implications for evaluation

BMJ

Content of invitations for publicly funded screening mammography

BMJ