Abstract
Objectives
To explore how women aged 50–69 invited to BreastScreen Norway perceived the information provided along with the invitation letter, as well as time spent on reading this information.
Methods
An anonymous questionnaire was sent, as a paper-based form along with a physical invitation letter, or as a link to a digital form in a digital invitation letter, to 84,543 women invited to BreastScreen Norway in 2022. The paper-based forms were handed in upon screening attendance. The women were invited to screening by physical or digital invitation including an information leaflet describing benefits and harms, or a link to similar information on a webpage. The questionnaire assessed women's perception of the information and time spent on reading it. Responses were presented by screening invitation type (physical/digital).
Results
A total of 9.9% (8355/84,543) of the women responded to the questionnaire. Among women invited by a physical letter, information about the screening examination and about benefits and harms was considered sufficient by 90% (4338/4797) and 89% (4246/4790), respectively, and 92% (4246/4790) reported the information to be sufficient to make an informed decision on participation. Among those invited digitally, the percentages were 83% (2788/3379), 78% (2618/3369), and 88% (2962/3370), respectively. About 59% (4807/8169) spent <5 min reading the information.
Conclusions
Most of the respondents perceived the information received upon invitation to BreastScreen Norway sufficient to make an informed decision on participation and used <5 min to read the information. The results should be interpreted with caution due to the low response rate.
Introduction
Population-based mammographic screening has been implemented in most European countries during the last decades, resulting in a 20–40% reduction in breast cancer mortality in the target group.1,2 Although proven beneficial, mammographic screening has both benefits and harms, and screening providers may face challenges related to informing the target groups about these topics.
In the initial era of organized mammographic screening, there was limited focus, transparency, and communication about its benefits and harms, both among professionals and women offered participation.3–5 However, in recent decades, professional interest in and acceptance of the topic's existence have increased, and screening providers are expected to offer information enabling women to make an informed decision about participation. A significant number of studies on the benefits and harms of mammographic screening have been performed,6–8 and transparency in communication of the methods used for estimations of effects has increased.9–12
Preparing information on the benefits and harms of participation in mammographic screening for those invited requires considerable knowledge about screening and methods used for estimation of the effects.9,10,12,13 An evidenced-based approach is essential to develop and offer women credible information. Focus group interviews of women in the target group, in-depth interviews, and questionnaires have been used in the work of developing transparent and balanced information.9,11,14,15 However, the term “balanced information” might include different aspects depending on who provides the information, e.g. stakeholders, decision-makers, or equipment vendors. 12
In the recently published “Manual for Breast Cancer Services” provided by the European Commission Initiative on Breast Cancer, 16 it is stated that a screening program should have a written policy on how to keep women participating in the screening process informed. The aim is to offer the women clear and current verbal and written information that describes the screening process, including possible benefits and harms. Further, information and leaflets should be adapted for local use, tailored, easy-to-understand, and up-to-date verbally, printed, and online, and the women should be involved in creating the information.
The nationwide mammographic screening program in Norway, BreastScreen Norway, started in 1996. The program has continuously revised the invitation letter and the accompanying information leaflet sent to all women in the target group. 17 If further information is warranted, the women are referred to the program's webpage. 18 A report on women's needs regarding the information provided along with the invitation to BreastScreen Norway, issued before the latest renewal of the information material and based on a limited sample, showed that women were interested in receiving a sufficient amount of non-intimidating and not overly negative information about the program in a simple language. 19 Despite the continuous efforts to improve and update the invitation and information leaflet, our knowledge of how the women use, experience, and value the provided information is still inadequate.19,20 To fill some of the knowledge gaps, we developed a questionnaire aimed at women invited to screening in BreastScreen Norway. The aim of the study was to explore how the women perceived the invitation letter and complementary information, as well as the time spent reading the information.
Patients and methods
This cross-sectional study was based on an anonymous survey questionnaire (Appendix A, English translation) sent to all women invited to BreastScreen Norway during the study period, from 5 October to 25 December 2022 (n = 84,543, Figure 1). As the questionnaire was anonymous, approval from the Regional Committee for Medical and Health Research Ethics was not required.

Study setting and population.
BreastScreen Norway is a population-based screening program administered by the Cancer Registry of Norway (CRN), which by January 2024 became a part of the Norwegian Institute of Public Health. All women aged 50–69 are invited to two-view mammographic screening biennially. During the last 25 years, the average annual attendance was 75%, with a recall rate of 3% and a screen-detected cancer rate of 0.6%. The program is described in detail elsewhere. 17
During the study period, the women were invited to attend screening according to normal procedures, through a personal invitation either by a physical or digital invitation letter, including a stated time and place for the screening examination. A digital mailbox is available for all residents in Norway after actively signing up, and about 60% of the women targeted by the screening program had an active digital mailbox in the study period and received the invitation digitally. 17 Together with the invitation letter, practical aspects such as how to reschedule or decline the offer and the possibility of opting out are described (Appendix B). An information leaflet in the form of two A4 pages is attached to the physical letter while the digital invitation includes a link to equivalent text and illustrations at the CRN's webpage (Appendix B) and is hereafter referred to as the information leaflet. The information leaflet is aimed at facilitating women's informed decision on participation and describes what happens at a screening examination, how they receive the screening result, and the benefits and harms of participating in the program.
The study population
Participating in the survey, as in the screening program, was voluntary. The women received the questionnaire either as a paper-based form attached to the physical invitation letter or as a link to a digital form in their digital invitation letter. Information/link to the questionnaire was placed at the bottom of the front page of the invitation letter without any highlights. The study was designed to encourage women to complete the form before attending the screening and either hand in the paper-based forms to the radiographers in closed envelopes during the pre-screening interview or send them directly to the CRN. However, the women were also given the opportunity to fill in the form physically or digitally on-site when attending the screening unit. A QR code leading to the digital form as well as paper-based forms were easily available in the waiting room. The paper-based forms were collected by the radiographers and sent to the CRN weekly for registration.
The questionnaire
The questionnaire was developed by a project group, including employees in a non-governmental organization representing women in the target group of the screening program, as well as radiologists, radiographers, and administrative and research staff at the CRN.
The questionnaire included 19 questions and was structured into three sections: (i) background information (3 questions), (ii) women's experience of the invitation and information provided about BreastScreen Norway (7 questions) and further about time spent reading the information (2 questions), and (iii) women's perceptions and attitudes towards the use of artificial intelligence (AI) in the interpretation of screening mammograms (9 questions). This study explores responses solely from sections (i) and (ii).
Background variables from section (i) included age at invitation (<55, 55–59, 60–64, and >64), level of education (no education/primary school, high school, and university/college up to 4 years or for more than 4 years), and self-perceived health status (0, poor–4, excellent).
Section (ii) included four questions regarding the information provided about BreastScreen Norway; how women perceived the information (1) on what happens at a screening examination, (2) about obtaining the screening result, (3) about the benefits and harms of participation, and (4) whether they were able to make an informed decision on participation after reading the information. The women responded on a five-point intensity scale (not at all, and to a small, some, large, and very large extent) with a separate option for “do not know.”
Three questions covered time spent on reading the information received from BreastScreen Norway. Primarily, the women were asked about time spent on reading the invitation letter and the information leaflet (not read, <5 min, 5–10 min, >10 min). Further questions included time spent reading information about the benefits and harms of participation in BreastScreen Norway, which is provided in the leaflet.
Statistical methods
Background variables were reported as frequencies and percentages, while categorical variables from section (ii) of the questionnaire were presented as percentages in graphs. Analyses were stratified by age at invitation and time spent reading the invitation letter and the information leaflet, using cross-tabulation and a chi-squared test. As BreastScreen Norway aims to increase the coverage of digital invitations due to reduced costs and convenience for women, we stratified the results by physical versus digital invitation to screening (type of invitation). Numbers of women who received physical versus digital invitation to screening and physical versus digital questionnaire forms were reported.
The five-point intensity scale used for four questions regarding information received from BreastScreen Norway was collapsed into 3: to a small extent (not at all and to a small extent), to some extent, and to a large extent (to a large extent and to a very large extent), for interpretation. The four questions of section (ii) of the questionnaire were referred to as (1) information regarding the examination, (2) information on the screening result, (3) information on benefits and harms, and (4) informed decision-making, throughout the text.
We performed a logistic regression analysis to calculate the odds ratio (OR) with 95% confidence intervals (CI) of spending ≥5 min reading the information, by type of invitation to screening and age group (<55, 55–59, 60–64, and >64 years). Women who received a physical invitation and women younger than 55 years at invitation were used as reference. ORs were adjusted for education and self-perceived health. Time spent reading the information in the invitation letter and the information leaflet, specifically about recall examinations, and the extent of sufficient information received on the four questions of section (ii) are presented by age group (<55, 55–59, 60–64, and >64 years) in a supplemental table (Appendix C). All statistical analyses were performed in Stata version 18.0.
Results
A total of 84,543 women were invited to BreastScreen Norway during the study period, and 8355 (9.9%) responded to the survey (Figure 1). A total of 4849 forms were associated with a physical invitation and 3405 with a digital invitation, and 101 forms did not include such information. A total of 6201 women filled in a paper-based questionnaire while 2154 completed a digital form.
The respondents were evenly distributed among the four age groups while 47.1% (3932/8355) reported an educational level of university/college (Table 1). Self-perceived health was reported to be good, very good, or excellent among 79.5% (6643/8355) of the respondents.
Background information about the study population.
Information about BreastScreen Norway
We found that 87.1% (7165/8230) of the respondents largely perceived the information regarding the screening examination to be sufficient (Table 2). The percentage was 90.4% (4338/4797) for those who received a physical invitation and 82.5% (2788/3379) for those who received a digital invitation. Most of the respondents, 86.1% (7072/8218), considered the information about obtaining the screening result as sufficient. Information about possible benefits and harms of participation was perceived largely sufficient by 84.1% (6905/8213). A total of 90.2% (7404/8205) of the respondents perceived the information to be largely sufficient to make an informed decision on participation in the program.
Distribution (%) of the women's satisfaction with information (to a large, some or a small extent, and do not know) about various aspects of BreastScreen Norway (BSN) that they received together with the invitation to participate, stratified by invitation type (physical or digital).
The number of respondents to this question: n = 8355 − 125 = 8230.
Women who did not answer the question on invitation type were not included (n = 101).
Overall association between the responses to each question and screening invitation type (physical versus digital) using χ2 test.
Time spent reading the information
Overall, 58.8% (4807/8169) of the women responding to the questionnaire spent <5 min reading the invitation letter and the information leaflet (Figure 2A). Among those who received a physical invitation, 42.7% (2050/4805) spent <5 min reading the invitation letter and the leaflet, 47.9% (2302/4805) reported 5–10 min, and 7.0% (334/4805) >10 min. For those who received a digital invitation, 82.0% (2757/3364) spent <5 min reading, 14.3% (481/3364) spent 5–10 min, and 1.3% (43/3364) >10 min.

(A) Time spent reading the invitation letter and the information leaflet and (B) time spent reading about the benefits and harms of participation for 8169 women screened in BreastScreen Norway, stratified by invitation type (physical or digital). Women who did not answer the question about invitation type are excluded.
In total, 45.5% (3708/8142) of the women reported <5 min spent on reading about benefits and harms (Figure 2B). A total of 8.7% (414/4783) of those who received a physical invitation reported not having read this information, while the percentage was 56.2% (1888/3359) for those with digital invitation. Among women who received a physical invitation, 57.6% (2754/4783) spent <5 min and 30.7% (1468/4783) spent 5–10 min reading about benefits and harms. For digital invitations, the percentages were 28.4% (954/3359) for <5 min and 13.2% (444/3359) for 5–10 min.
Using women who received a physical invitation to screening as reference, the adjusted OR of spending ≥5 min reading the invitation letter and the information leaflet was 0.17 (95% CI: 0.15–0.19, p < 0.01) for those who received a digital invitation (Table 3). For digital invitations, the OR of spending ≥5 min reading about benefits and harms was 0.44 (95% CI: 0.39–0.50, p < 0.01). Using the age group <55 as reference, the adjusted OR of spending ≥5 min reading the invitation letter and the information leaflet was lower for the 55–59 and 60–64 age groups, while it did not differ statistically significantly for the >64 age group (Table 3).
The odds ratios (OR) with 95% confidence intervals (CI) of spending ≥5 min reading the information from BreastScreen Norway using the physical invitation to screening and the age group <55 as reference, adjusted for education and self-perceived health.
The unadjusted proportions of women by time spent reading the information were in line with the results from the regression analyses for the age groups (Appendix C: Table A). The percentages of women who received sufficient information regarding the examination, obtaining the screening results, benefits and harms of participation, and making an informed decision on participation increased by age groups (Appendix C: Table B).
Discussion
We found that 84–90% of the responding women perceived the provided information about what happens at a screening examination, how the result of the screening examination is obtained, the benefits and harms of participation in BreastScreen Norway, and the possibility to make an informed decision on participation as largely sufficient. About 60% of the responding women spent on average <5 min on reading the invitation letter and the information leaflet attached to the letter. Only 10% of the women who were sent the questionnaire responded to it, and the results should be interpreted with care. However, our results were in line with a survey on aspects of the information provided along with the invitation to BreastScreen Norway in 2015, which had a response rate of 89%. 19
The percentage of women with high educational level was larger among those who received digital versus physical invitation (59% vs 38%). This finding might be associated with age, as older women were less frequently invited digitally to BreastScreen Norway and had a lower educational level. The percentages of women who were largely satisfied with the received information were generally higher for those who received a physical versus digital invitation to screening. This could be related to difficulties in terms of reading the information digitally or using the links on mobile devices, as well as distractions associated with the use of digital sources. Furthermore, Norwegian women aged 65 and older have been shown to be more frequent supporters of a paternalistic approach compared to younger women and might have considered the information to be more trustworthy and responded less critically compared to younger women.21–24 The results might imply that more comprehensive ways of providing the information should be considered in the future to ensure informed decision-making.
In the last decade, the voluntariness of participation in screening, privacy, the opportunity to opt out from the screening program, and the right to refuse permanent storage of personal information related to negative screening examinations are aspects that have been actively promoted both on social media and in official recommendations in Norway.21,25 Women have therefore become more attentive to the received information and aware of their alternatives regarding participation in BreastScreen Norway and the importance of making an informed decision on participation. Generally, we consider the issue of information perception complex and the fact that most of the women considered the information on four major aspects related to screening participation largely sufficient and used <5 min to read it was surprising. This might be related to women's high trust in the healthcare system, viewing mammographic screening as a form of self-care or unwillingness to reflect on or still low awareness of the complexity of possible detriments of the service.23,24,26
Women in the youngest age group (<55 years) were more likely to be first-time attendees, as women are entering the program from the age of 48–52. 17 It is possible that these women read the information leaflet more carefully, while older women, who have attended screening previously, may already be familiar with the information and thus spent <5 min reading it. Furthermore, women in the youngest age group tended to spend more time reading about the different aspects of screening participation included in this study. Women in the older age groups spent less time on this information, probably because they were more aware of the service and solely read to refresh their knowledge.
Most of the responding women assessed their own health as good or better, suggesting that the respondents were able to make an evaluation of the received information and that the results, specifically reading time but also the understanding of the received information, were not biased by women's health status. On the other side, health conditions among those who did not attend the screening and thus did not respond to this questionnaire might be lower compared to those who attended and responded, which could have resulted in both under- and overestimation of our findings on satisfaction with the received information and time spent on reading it.
Even though most of the women spent <5 min reading the information, more women who spent 5–10 min reading considered the information on the four aspects covered by this study largely sufficient. This suggests that the recommended reading time for the information should be at least 5 min. The short reading time for most of the women might be associated with a lack of interest or time, as well as a high level of trust in the system, high adherence to screening, and previous knowledge of the received information.23,24,26
As far as we are aware, this is the first study assessing information related to invitation to and participation in organized mammographic screening, using data from women who were invited to screening. Recent studies have commonly focused on women's informed decision-making, using a decision aid for making an informed choice about participation, and women's views on risk-based screening.10–12 In a study by Zapka et al., paper-based information from 16 countries offering organized breast cancer screening was compared. 27 The study reported substantial variability in the comprehensiveness of information on test characteristics and benefits and harms of screening, emphasizing that the balance in terms of objectivity, completeness, and increasing screening uptake is essential for comprehensiveness. 27 Most of the women who participated in our study did not experience a lack of comprehensiveness in the information received, as they considered the information largely sufficient to make an informed decision on participation. However, our study did not assess to what extent the respondents understood the information, rather their experience of understanding was evaluated. Therefore, comparison of our results with those from other international studies was challenging.10–12,27
The main limitation of this study is the low response rate. A possible reason for this could be the location of the text or the link inviting the women to participate in the study, at the very bottom of the invitation letter, without any highlighting. The women might thus have read the invitation letter, but not noticed the invitation to respond to the questionnaire and participate in the study. Also, due to the study design, we could not identify and send reminders to non-responding women. The study period, October–December, is a period with a high number invited and screened. 17 A busy schedule for the radiographers, with limited time to encourage women to participate, might also be an explanation for the low response rate. Furthermore, the women might consider the questions in this survey demanding compared to other surveys performed in BreastScreen Norway with higher response rates.19,20,28 In the other studies, they were asked factual questions, such as age, number of births, height, and weight.19,20,28 Responding to questions on perceptions requires some time for consideration before deciding. A survey using a questionnaire might not be the optimal study design to explore the perception of issues.11,29 In future studies, triangulation of methods should be considered, combining qualitative and quantitative design and including users of the screening program early in the process of planning the study. 30 Another limitation was the lack of information on the background characteristics of the participants, including various socioeconomic factors and first-time or subsequent attendance. Due to the anonymous approach, it was not possible to add such information in retrospect. The respondents with higher socioeconomic status and subsequent attendees may have had better health awareness and possible satisfaction with this public service compared to those with lower socioeconomic status and first-time attendance. 31 Responses on questionnaires are known to be associated with information bias related to education and health status. 32 We assume this bias to be relevant for our study but the extent of it is unknown. Further, information about the country of origin was not included in the study. The questionnaire was not translated, and the perception of the information might be related to the women's ability to read Norwegian. We assume that if a high proportion of immigrant women had responded to the questionnaire, they would have contributed with a longer reading time and a more critical view of the provided information due to a reported lower trust in the healthcare system in Norway, compared to ethnic Norwegians.33–35
Overall, the low response rate in our study makes it difficult to draw any strong conclusions. However, results from more than 8000 women attending BreastScreen Norway indicated that the information received was perceived as largely sufficient to make an informed decision on participation. Time spent reading the invitation and information leaflet was <5 min for most of the women. Given the limited time they reported spending on reading the information, we consider simple, precise, and targeted information to be a prerequisite for reaching out to the women in the target group and providing them with the necessary knowledge to make an informed decision on participation. Additional and more detailed information should, however, be readily available to ensure evidence-based decision-making.
Supplemental Material
sj-pdf-1-msc-10.1177_09691413241280791 - Supplemental material for Women's experience of the information provided along with invitation to participate in BreastScreen Norway
Supplemental material, sj-pdf-1-msc-10.1177_09691413241280791 for Women's experience of the information provided along with invitation to participate in BreastScreen Norway by Nataliia Moshina, Marie Burns Bergan, Åsne Sørlien Holen, Gunhild Mangerud and Solveig Hofvind in Journal of Medical Screening
Supplemental Material
sj-docx-2-msc-10.1177_09691413241280791 - Supplemental material for Women's experience of the information provided along with invitation to participate in BreastScreen Norway
Supplemental material, sj-docx-2-msc-10.1177_09691413241280791 for Women's experience of the information provided along with invitation to participate in BreastScreen Norway by Nataliia Moshina, Marie Burns Bergan, Åsne Sørlien Holen, Gunhild Mangerud and Solveig Hofvind in Journal of Medical Screening
Supplemental Material
sj-docx-3-msc-10.1177_09691413241280791 - Supplemental material for Women's experience of the information provided along with invitation to participate in BreastScreen Norway
Supplemental material, sj-docx-3-msc-10.1177_09691413241280791 for Women's experience of the information provided along with invitation to participate in BreastScreen Norway by Nataliia Moshina, Marie Burns Bergan, Åsne Sørlien Holen, Gunhild Mangerud and Solveig Hofvind in Journal of Medical Screening
Footnotes
Acknowledgements
We thank Morten Olsen, Silje Sagstad, and Cecilie Løbak Hestmann working in the section for breast cancer screening of the Cancer Registry of Norway, the Norwegian Institute of Public Health, for data management, coding, and administrative support. We will also thank the women who have responded to the questionnaire and the radiographers who collected and sent the paper-based forms to the Cancer Registry of Norway for registration. Furthermore, we thank Elisabeth Swärd, special advisor at the Norwegian Women's Public Health Association, for her comments and contribution in developing the questionnaire. We thank the IT department of the Cancer Registry of Norway, the Norwegian Institute of Public Health, for the technical arrangements related to sending out invitation letters and questionnaires.
Author contributions
NM: writing—review & editing, writing—original draft, visualization, validation, methodology, investigation, formal analysis. MBB: writing—review & editing, visualization, formal analysis, data curation. ÅSH: writing—review & editing, validation, methodology. GM: writing—review & editing, writing—original draft, supervision, project administration, methodology, conceptualization. SH: writing—review & editing, writing—original draft, supervision, project administration, methodology, investigation, data curation, conceptualization.
Data availability
Data from an anonymous questionnaire has been used in this publication. The interpretation and reporting of these data are the sole responsibility of the authors, and no endorsement by the Norwegian Institute of Public Health is intended nor should be inferred.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
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References
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