Informed Choice
Do women make an informed choice about participating in breast cancer screening? A survey among women invited for a first mammography screening examination

https://doi.org/10.1016/j.pec.2012.08.003Get rights and content

Abstract

Objective

To determine the level of informed choice in women invited for breast cancer screening for the first time.

Methods

To determine the content of decision-relevant knowledge, 16 experts were asked to judge whether each of 51 topics represented essential information to enable informed choices. To assess the level of informed choices, a questionnaire was then sent to all 460 invited women in the south-western part of the Netherlands who turned 50 in August 2008.

Results

Of all 229 respondents, 95% were deemed to have sufficient knowledge as they answered at least 8 out of 13 items correctly. In 90% there was consistency between intention (not) to participate and attitude. As a result, 88% made an informed choice. Sixty-eight percent of women responded correctly on the item of over-diagnosis. Even if all non-respondents were assumed to have no knowledge, 50% of the total group invited to participate still had sufficient knowledge.

Conclusions

Women were deemed to have sufficient relevant knowledge of the benefits and harms if they answered at least half of the items correctly.

Practice implications

To further increase informed choices in breast cancer screening, information on some of the possible harms merits further attention.

Introduction

Breast cancer screening has positive health effects in terms of reducing the risk of dying from breast cancer [1], [2], [3]. However, a negative effect of screening is that many women are advised to have a diagnostic assessment because of a positive screening result although they will never have breast cancer. The number of these women is of course much larger than those saved from a breast cancer death as a result of screening [3]. For population-based cancer screening programmes, at the population level the benefits should outweigh the harms [4]. However, individuals may still not want to be screened, because the balance between benefits and harms can be valued differently for their own personal situation.

In several Western countries, informed decision-making about participating in screening, also in cancer screening, has become an explicit purpose [5], [6]. An informed choice about participation in breast cancer screening requires that invited women have opportunities to weigh all possible favourable and unfavourable effects of screening so as to enable them to form an opinion and subsequently make an autonomous choice, free from external pressures or barriers [7]. There has been a shift from promoting the benefits of screening towards providing comprehensive information to enable people to make an informed choice [7], [8], [9], [10].

Following Marteau, we defined an informed choice as one that is based on relevant knowledge while the decision-maker's attitude is consistent with her actual screen behaviour [11]. Note that in applying the concept of informed choice, non-attendance can be a perfectly acceptable outcome of the deliberative process, if it is based on sufficient decision-relevant knowledge and consistent with the decision-maker's attitude towards participating in the screening programmes [11].

In the Netherlands, breast cancer screening is offered free of charge every two years to all women in the 50–75 age brackets through a governmental funded screening programme. Regional screening organizations invite women to participate by sending them a personal letter. Information about the screening is provided in a leaflet enclosed with the invitation letter. However, it was not known whether women invited for breast cancer screening are able to make an informed decision about whether or not to participate in the screening programme.

The purpose of this study is to determine the level of informed choice in a representative sample of women who are invited for breast cancer screening for the first time.

Section snippets

Study design, participants and data collection

In the Netherlands, women receive their first invitation to participate in breast cancer screening around their 50th birthday. To all 460 women in the regions of The Hague, Leiden and Delft who were newly eligible for the screening programme – mostly women who turned 50 in August 2008 – the screening organization (Bevolkingsonderzoek Zuid-West) sent an invitation letter, a standard information leaflet (version 2007) and the questionnaire to assess the level of informed choice. The content and

Response and characteristics of the responding women

Of the 460 women invited for breast cancer screening, 229 (49.8%) completed the postal questionnaire. The respondents’ ages were 49 (11.5%), 50 (49.8%), 51 (38.3) and 60 (0.4%) (new resident). In 34.5% of respondents the educational level was low, 37.3% had an intermediate level of education and 28.2% had a high level of education.

Knowledge

The mean total score was 10.9 (standard deviation 1.7). The internal consistency of the scale was 0.55 (Cronbach's alpha). Scores significantly increased in

Discussion

A recent study concluded that in several European countries information brochures about breast cancer screening lack information that is essential in order to arrive at an informed decision [20]. Moreover, information on the harms and benefits of the screening must be understood and should be unbiased [21]. Apparently, presenting information about the harms and benefits of breast cancer screening in an understandable and balanced way is a complex matter [22].

We assessed the level of

Acknowledgements

Van Agt, Fracheboud, Van der Steen and De Koning have no support from any organization for the submitted work; no financial relationships with any organizations that might have an interest in the submitted work in the previous three years, any other relationships or activities that could appear to have influenced the submitted work. Only De Koning declares financial activities outside the submitted work, consisting of a grant from a German insurance company, SCOR Global Life, paid to his

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