Scientific Exhibit H. Mosser; Krems/AT Breast, Mammography, Screening, Health policy and practice /ecr2013/C-0364

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1 Breast cancer screening in Austria: online survey on women's level of information, anxiety and trust in information sources in order to assess the extent of informed consent for screening. Poster No.: C-0364 Congress: ECR 2013 Type: Scientific Exhibit Authors: H. Mosser; Krems/AT Keywords: Breast, Mammography, Screening, Health policy and practice DOI: /ecr2013/C-0364 Any information contained in this pdf file is automatically generated from digital material submitted to EPOS by third parties in the form of scientific presentations. References to any names, marks, products, or services of third parties or hypertext links to thirdparty sites or information are provided solely as a convenience to you and do not in any way constitute or imply ECR's endorsement, sponsorship or recommendation of the third party, information, product or service. ECR is not responsible for the content of these pages and does not make any representations regarding the content or accuracy of material in this file. As per copyright regulations, any unauthorised use of the material or parts thereof as well as commercial reproduction or multiple distribution by any traditional or electronically based reproduction/publication method ist strictly prohibited. You agree to defend, indemnify, and hold ECR harmless from and against any and all claims, damages, costs, and expenses, including attorneys' fees, arising from or related to your use of these pages. Please note: Links to movies, ppt slideshows and any other multimedia files are not available in the pdf version of presentations. Page 1 of 28

2 Purpose The purpose of this work was to evaluate the current level of women's knowledge about the topics of breast cancer and mammography screening in Austria and the feeling of anxiety associated with these topics. Furthermore the women's perceptions of the credibility of various information sources were addressed. This is particularly important because women are caught in the middle of a scientific controversy concerning the benefits and harms of breast cancer screening. Proponents of screening provide data showing the benefits in terms of reduction of breast cancer mortality [1-5]. On the contrary increasing scientific evidence demonstrates that breast cancer mortality is decreasing both in countries with and without screening almost to the same extent, and critics of breast cancer screening claim that the possible harms, particularly overdiagnosis, may outweigh the benefits of screening [6-12]. In Austria a nationwide breast cancer screening program is planned to start in October 2013 for women between 45 and 69 years of age, though an opportunistic screening already exists since the 1990s. Published data show that in mammographies have been performed, most of them supposed to be opportunistic screening accounting for 30% of the population in the screening age group [13]. Many print and online information sources on breast cancer screening are provided by health authorities and various private and public organisations in Austria, and worldwide operating campaigns Fig. 1 on page 3 amplify women's awareness of breast cancer to an extent many already regard as an unjustified exaggeration [14]. So it seems that information on breast cancer screening is readily accessible. But do women feel sufficiently informed about the benefits and harms of breast cancer screening to be able to perform an informed decision? As breast cancer seems to dominate the topics in public media - how do women perceive the importance of this disease? What are their perceptions on early detection of breast cancer with mammography? Since -"worry" - cynically - is regarded to be a "good motivator for breast cancer screening" [15], to what extent is anxiety associated with breast cancer screening and which information sources do women regard as trustworthy? Based on the results of this survey which addresses these and other questions existing sources of information should be reevaluated in terms of information on benefits and harms of breast cancer screening and should be adapted as might be necessary to enable women to perform an informed decision pro or contra participation. Page 2 of 28

3 Images for this section: Fig. 1: Considering world wide operating campaigns on breast cancer awareness and mammography screening - are Austrian women ready for an informed decision pro or contra participation in breast cancer screening? Fotolia Page 3 of 28

4 Methods and Materials Online survey in German language aiming at women in Austria. Participants acquired through social networks (using the author's Facebookaccount, Twitter and internet discussion forums). Survey design and analysis: using the open source software LimeSurvey. The survey includes 5 question groups with 24 questions and subquestions. For the purpose of this presentation 9 key areas were selected for further analysis: Awareness of breast cancer as an important personal topic. Perception of breast cancer as a dominant topic in different environments. Breast cancer screening: connotation with and level of anxiety both personally and as perceived to prevail in public. Personal level of knowledge about benefits of breast cancer screening. Personal level of knowledge about possible harms of breast cancer screening and assumption of types of harm. Appraisal of personal information level regarding mammography screening. Indication for the last mammography exam (if applicable). Ranking personal trustworthiness of information sources regarding breast cancer and mammography screening. Demographic data (country, age group, occupation, living environment). Question types: arrays of 5 point rating scale using checkboxes: Depending on the degree of approval 1 stands for "maximal approval" or "yes" and 5 stands for "not at all" or "no" (examples: "Do you think screening is beneficial?" "Do you think screening might be harmful?" "To what extent do you feel informed about mammography screening?") questions with prefilled answer choices such as "very", "fairly/partly", "not at all" (examples: "Do you regard anxiety to be associated with the topic of mammography screening?" "How important is breast cancer to you?") multiple choice questions and combination with a 5 point rating scale (example: "Concerning information sources on breast cancer screening what is your degree of trust in...?" Fig. 2 on page 6) yes/no questions (example: "Did you have at least one mammogram already?") free text input fields for comments or to avoid to bias answers (example: "If you think mammography screening may be harmful, what kind of harm do you mean?" Fig. 3 on page 6) General information Page 4 of 28

5 - Required time to answer all questions was approx minutes. - Cookies were set to prevent repeated participation. - Survey was online for approx. 4 months (from Sept. 9th to Dec. 28th, 2012) on the survey internet portal internet-umfrage.com. Analysis of survey data: Using the statistic tool of the open source software LimeSurvey Exporting the results to Microsoft Excel spread sheet Analysis of data and creating graphs of results using Microsoft Excel Page 5 of 28

6 Images for this section: Fig. 2: Example of multiple choice question concerning trustworthiness in various information sources on independent information about mammography screening or breast cancer. H. Mosser Page 6 of 28

7 Fig. 3: Question type with free comment field in order to avoid to bias the answer. Here: "If you think mammography screening may be harmful what kind of harm do you mean?" The participant's entry was "radiation exposure". H. Mosser Page 7 of 28

8 Results Of 319 female Austrian survey participants 271 fully completed the questionnaires resulting in answers which were used for data analysis. This presentation exhibits the results of the analysis of 9 key questions including demographic data. 1. Awareness of breast cancer as an important personal topic: 93,3% of the participants consider breast cancer as a personally important issue (49,4% as very and 43,9% as fairly important). Fig. 4: Perceived personal importance of breast cancer. References: Hans Mosser 2. Perception of breast cancer as a dominant topic in different environments: For 74,2% the topic of breast cancer seems to prevail publicly, 50,3% within the family and with friends and 35,7% at work. Page 8 of 28

9 Fig. 5: Perceived thematic dominance of breast cancer in various environments. References: Hans Mosser 3. Breast cancer screening: connotation with and level of anxiety: A feeling of anxiety is associated with this topic personally in 68,3% and perceived to prevail in public by 89% of the participants. Further grading of level of anxiety see figure 6: Page 9 of 28

10 Fig. 6: Feeling of anxiety associated with breast cancer. References: Hans Mosser 4. Perception of benefit of breast cancer screening: On a 5 point ranking scale 59,2% of the women regard mammography screening as "very beneficial" (ranking 1), 4,3% as "not beneficial at all" (ranking 5). Whole range of ranking scale see figure 7: Fig. 7: Perceived benefits of mammography screening. References: Hans Mosser 5. Personal knowledge about possible harms of breast cancer screening and assumption of types of harm: To avoid biasing no default answers were provided. Instead participants could use a free text box to enter what they thought to be harms in case they regarded mammography screening as being possibly harmful. 37,9% of women think there are no harms at all (ranking scale 1) while 9,8% regard it as "very harmful" (ranking scale 5). Whole range of ranking scale see figure 8: Page 10 of 28

11 Fig. 8: "Is mammography screening possibly harmful?" References: Hans Mosser 5a. Assumption of types of harm: 99 of 271 participants used the free text box to enter what they thought to be harms in case they scored mammography screening as being possibly harmful. Multiple entries were possible. Exposure to radiation was the dominant answer (89,9%). Further harms mentioned were psychological stress before, during and after mammography (34,3%), misdiagnosis (24,2%), causing cancer or disseminating cancer cells by squeezing the breast during mammography (16,2%), overdiagnosis (2%) and others/not specified (15,1%). Page 11 of 28

12 Fig. 9: Assumption of possible types of harm of mammography screening (free text field entry - no prefilled answers were provided to avoid biasing. Multiple entries possible). References: Hans Mosser 6. Appraisal of personal information level regarding breast cancer screening: 47,5% of participants regard themselves to be not enough informed. On a 5 point scale the information level is reported to be very good (1) in 10,1%, good (2) in 18,4%, sufficient (3) in 24,1%, while 22,5% regard themselves to be less informed (4) and 26,0% not at al (5). Page 12 of 28

13 Fig. 10: Personal information level on breast cancer screening. References: Hans Mosser 7. Indications for mammography exam (if applicable): For those participants who agreed to have had at least one mammogram already (n=184) the indication for the last performed mammography exam was early breast cancer detection (= opportunistic screening) in 66,1%, follow up exam (so actually also related to screening) in 14,4% and suffering of breast complaints in 13,6%. 5,1% of the women did not know the reason for their last mammogram. Page 13 of 28

14 Fig. 11: Indications for the last mammogram. References: Hans Mosser 8. Ranking the personal trustworthiness/credibility of information sources regarding breast cancer and mammography screening: The highest credibility is attributed to gynecologists (93,3%), radiologists (90,2%) and breast cancer support groups (89,6%). Scientists and family doctors rank around 80%. Public health authorities and health insurance funds are seen as credible sources of information by 47% resp. 45,3% of the participants. The lowest ranking in credibility concerns the current Austrian Minister of Health Alois Stoeger (25,6%), the pharmaceutical industry (20,1%) and Austrian politicians in general (11%). Page 14 of 28

15 Fig. 12: Credibility of various information levels regarding breast cancer screening (multiple answers possible). References: Hans Mosser 9. Demographic data of the participants: Age groups, living environments (large city, small town, village) and occupations of participants are presented in corresponding figures. Age groups: Fig. 13 on page 21 Living environment: Fig. 14 on page 22 Occupation: Fig. 15 on page 22 Page 15 of 28

16 Images for this section: Fig. 4: Perceived personal importance of breast cancer. Hans Mosser Fig. 5: Perceived thematic dominance of breast cancer in various environments. Hans Mosser Page 16 of 28

17 Fig. 6: Feeling of anxiety associated with breast cancer. Hans Mosser Fig. 7: Perceived benefits of mammography screening. Page 17 of 28

18 Hans Mosser Fig. 8: "Is mammography screening possibly harmful?" Hans Mosser Page 18 of 28

19 Fig. 9: Assumption of possible types of harm of mammography screening (free text field entry - no prefilled answers were provided to avoid biasing. Multiple entries possible). Hans Mosser Page 19 of 28

20 Fig. 10: Personal information level on breast cancer screening. Hans Mosser Fig. 11: Indications for the last mammogram. Hans Mosser Page 20 of 28

21 Fig. 12: Credibility of various information levels regarding breast cancer screening (multiple answers possible). Hans Mosser Page 21 of 28

22 Fig. 13: Age groups of participants. Yellow columns indicate age groups relevant for or shortly before onset of screening (41-69 years of age: 60,2%). Hans Mosser Fig. 14: Living environment of survey participants. Hans Mosser Page 22 of 28

23 Fig. 15: Occupation of participants. Hans Mosser Page 23 of 28

24 Conclusion Despite large breast cancer awareness campaigns and many easily accessible sources of information on mammography screening the results of this survey demonstrate high levels of anxiety, misinformation or lack of information associated with these issues. A key example is the almost total absence of the participants' knowledge of the possibility of overdiagnosis that is supposed to be the case in 19-33% of screen detected breast cancers [4,7,16]. Inherent to the method this online survey's results are limited to female Austrian internet users. But considering the higher literacy levels of internet users compared with nonusers [17,18] it is reasonable to assume that the extent of lack of knowledge about breast cancer and mammography screening is even more prevalent in the average target population for screening than this survey indicates. Gynecologists and radiologists are regarded to be the most trustworthy sources of information while credibility of information provided by public sources is less and is virtually absent regarding politicians. The results of this online survey suggest that the majority of Austrian women in the screening age group seems not to be able to make an informed decision about participation in a breast cancer screening program. This is particularly important as in Austria the start of a nationwide breast cancer screening program for women from 45 to 69 years is scheduled for October Existing health information sources should therefore be reevaluated in order to provide comprehensive and independent information for Austrian women concerning the benefits and harms of breast cancer screening to enable an informed decision. Page 24 of 28

25 References [1] Berrington et al., Mammographic screening before age 50 years in the UK: comparison of the radiation risks with the mortality benefits. Br. J. Cancer 2005;93: [2] Badgwell BD et al., Mammography before diagnosis among women age 80 years and older with breast cancer. J Clin Oncol 2008;26:1-8 [3] Tabar et al., Swedish Two-County Trial: Impact of Mammographic Screening on Breast Cancer Mortality during 3 Decades. Radiology 2011;260: [4] Independent UK Panel on Breast Cancer Screening. The benefits and harms of breast cancer screening: an independent review. The Lancet, 30 October 2012 doi: / S (12) [5] EUROSCREEN Working Group. Summary oft he evidence of breast cancer screening outcomes in Europe and first estimate oft he benefit and harm balance sheet. J Med Screen 2012;19 Suppl 1:5-13 [6] Berry DA et al., Flawed inferences about screening mammography's benefit based on observational data. J Clin Oncol 2009;27(4):639 [7] Gøtzsche PC, Nielsen M. Screening for breast cancer with mammography. Cochrane Database Syst Rev. 2011;DOI:10/1002/ CD pub4 [8] Autier P et al., Mammography screening and breast cancer mortality in Sweden, J Natl Cancer Inst 2012, doi: /jnci/djs272 content/104/14/1080.abstract [9] Jørgensen KJ et al., Is mammographic screening justifiable considering its substantial overdiagnosis rate and minor effect on mortality. Radiology 2011;260(3): [10] Jørgensen KJ et al., The Two-County breast screening trial cannot provide a reliable estimate of the effect of breast cancer screening. Radiology 2012;262(2): Page 25 of 28

26 [11] Gøtzsche PC. Mammography screening: truth, lies and controversy. Radcliffe Publishing, London 2012 [12] Bleyer A, Welch HG., Effect of three decades of screening mammography on breast cancer incidence. NEJM 2012;367: [13] Hauptverband der Österr. Sozialversicherungsträger, Factsheet BrustkrebsFrueherkennungsprogramm 2011, download: [14] Website [15] Zhang LR et al., Worry is good for breast cancer screening: A study of female relatives from the Ontario site of the breast cancer family registry. J Cancer Epidemiol. 2012;2012: [16] Jørgensen KJ et al., Overdiagnosis in organized mammography screening in Denmark: a comparative study. BMC Women's Health 2009;9:3 [17] Birru MS et al., Internet usage by low-literacy adults seeking health information: an observational analysis. J Med Internet Res. 2004;6(3):e25 [18] Austin EW et al., The relationships of information efficacy and media literacy skills to knowledge and self-efficacy for health-related decision making. J Am Coll Health. 2012;60(8): Page 26 of 28

27 Personal Information Hans Mosser, M.D. Fig. 16 on page 28 Chairman Department of Radiology Landesklinikum Krems Mitterweg 10 A-3500 Krems Austria mailto: Page 27 of 28

28 Images for this section: Fig. 16: Hans Mosser Mosser Page 28 of 28