Recruitment Methods for First Round Mammographic Screening for Breast Cancer in Lower Silesia

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1 ORIGINAL PAPERS Adv Clin Exp Med 2009, 18, 6, ISSN X Copyright by Wroclaw Medical University BARTŁOMIEJ SZYNGLAREWICZ 1, RAFAŁ MATKOWSKI 1, 2, PIOTR KASPRZAK 3, MAŁGORZATA STRYCHALSKA 3, URSZULA STASZEK 1, 2, KRZYSZTOF SZEWCZYK 1, 2, JÓZEF FORGACZ 1, MAREK PUDEŁKO 1, JAN KORNAFEL 2 Recruitment Methods for First Round Mammographic Screening for Breast Cancer in Lower Silesia Metodyka rekrutacji na mammografię podczas pierwszej rundy badań przesiewowych raka piersi na Dolnym Śląsku 1 2nd Department of Surgical Oncology, Lower Silesian Oncology Center, Wroclaw, Poland 2 Department of Oncology and Gynacecological Oncology Clinic, Wroclaw Medical University, Wroclaw, Poland 3 Breast Imaging and Minimal Invasive Biopsy Department, Lower Silesian Oncology Center, Wroclaw, Poland Abstract Background. A population based mammographic screening program can significantly reduce breast cancer mor tality. One of the most important factors of well organized screening is an effective invitation system resulting in a high attendance rate. Objectives. The aim of this study was to assess the effectiveness of invitation methods during the first round of a breast cancer screening program and to compare it in the years 2007 and Material and Methods. Questionnaire data of 153,807 women years of age who were screened during in the region of Lower Silesia were analyzed. Before mammography they were asked about the invita tion method which induced them to participate in the screening examination. The answers were prospectively col lected in a computer data base. Results. For 54% of the women their decision was mostly influenced by the invitational letter (2007 vs. 2008: 59% vs. 47.6%), 11% by mass media (10% vs. 12%), 11.5% by health professionals (9.8% vs. 14%), 2.5% by texting via mobile phone (2.2% vs. 2.7), and 21% by other ways (19% vs. 23.7%), i.e. leaflet, advertising, telephone hot line, or web site. The women invited by letter or leaflet were most often screened in high volume specialized breast care centers. Those invited by media rather chose small services near their homes. In multi disciplinary institutions, the women were most effectively invited by medical professionals. Conclusions. Communication using invitational letters should be intensified and improved because of the signifi cant reduction in the amount of participants responding to this method. Leaflets, advertising, and media remain effective especially in specialized high volume breast care centers. The activity of health professionals increases, being the most helpful in multi disciplinary institutions with mammography units. Texting invitations seems to be insufficient (Adv Clin Exp Med 2009, 18, 6, ). Key words: breast cancer, mammography, screening, invitation methods. Streszczenie Wprowadzenie. Badania przesiewowe raka piersi mogą istotnie zmniejszyć umieralność na ten nowotwór pod wa runkiem, że programem jest objęty duży odsetek kobiet z docelowej populacji. Skuteczny system rekrutacji jest za tem podstawowym warunkiem prowadzenia badań przesiewowych. Cel pracy. Analiza różnych metod rekrutacji podczas pierwszej rundy badania przesiewowego oraz porównanie ich skuteczności między pierwszym i drugim rokiem prowadzenia programu. Materiał i metody. Analizą objęto kobiet w wieku lat, które wykonały przesiewową mammogra fię na Dolnym Śląsku podczas pierwszej rundy programu (lata ). Przed badaniem pacjentki podawały źródło informacji, które skłoniło je do wzięcia udziału w badaniach przesiewowych. Odpowiedzi w sposób pro spektywny gromadzono w komputerowej bazie danych.

2 610 B. SZYNGLAREWICZ et al. Wyniki. Dla 54% kobiet najważniejszym źródłem informacji, na podstawie których podjęły decyzję o poddaniu się przesiewowej mammografii był list zapraszający (2007 vs 2008: 59% vs 47,6%), dla 11% media (10% vs 12%), dla 11.5% personel ochrony zdrowia (9,8% vs 14%), dla 2.5% sms (2,2% vs 2,7), a dla 21% inne metody (19% vs 23,7%): ulotka informacyjna, promocja bezpośrednia, informacyjna linia telefoniczna lub strona internetowa. Ko biety zapraszane za pomocą listów i ulotek najczęściej wykonywały badanie w dużych i wyspecjalizowanych ośrodkach, kobiety zapraszane przez media najchętniej wybierały małe ośrodki blisko miejsca swojego zamieszka nia. W wieloprofilowych placówkach dysponujących także pracownią mammografii najskuteczniejsze zaproszenia pochodziły od pracowników ochrony zdrowia. Wnioski. Należy znacznie zintensyfikować kolportowanie i być może zmodyfikować treść listów wysyłanych przez NFZ ze względu na znaczące zmniejszenie liczby kobiet, które odpowiedziały na zaproszenie. Ulotki, promocja bez pośrednia i media pozostają skutecznym sposobem rekrutacji na badanie przesiewowe raka piersi, szczególnie pro wadzone w wyspecjalizowanych ośrodkach o dużej liczbie wykonywanych badań mammograficznych. Zwiększa się rola pracowników ochrony zdrowia, szczególnie w mniej wyspecjalizowanych wieloprofilowych placówkach me dycznych. Wydaje się, że wysyłanie zaproszeń przez sms jest wątpliwe (Adv Clin Exp Med 2009, 18, 6, ). Słowa kluczowe: rak piersi, mammografia, badania przesiewowe, metody rekrutacji. Breast cancer is the most common female malignancy in Poland, with approximately 12,000 new cases each year [1]. In Lower Silesia, a region with 3 million inhabitants, there were over 1000 new breast cancer cases and nearly 400 deaths reg istered due to this malignancy in The inci dence has increased to 6.5% a year during the last two decades [2]. Breast cancer control is slowly getting better in Poland. In Lower Silesia, progno sis has significantly improved since the 1990s, but the recent 67.6% five year relative survival rate remains lower than the average European rate [2, 3]. The important role of periodic mammographic screening in reducing breast cancer mortality has been well established since the introduction of the Health Insurance Plan in New York in the 1960s [4]. To achieve this, a sufficient, cost effec tive, carefully planned and well organized invita tion system resulting in a high attendance rate seems to be one of the crucial factors. The aim of this study was to assess the effec tiveness of invitation methods during the first round of mammographic screening ( ) in the region of Lower Silesia. Material and Methods The National Health Fund (NFZ) introduced population based breast cancer screening in Poland on January 1, This nationwide pro gram targets women years old who are eli gible for breast cancer screening. Women under going treatment or being followed up due to breast cancer are excluded. Two view (cranio caudal and oblique), full field screen film mammography without clinical examination is used as the stan dard screening test. Because of the NFZ s limited budget, mammography is evaluated with a single reading. The screening interval is two years. Before mammography, all attendees had to fill in a special questionnaire designed by the NFZ for breast cancer screening. Among other questions (e.g. family history, hormone replacement ther apy) the women were also asked which invitation method was the most helpful in the decision mak ing process and which prompted them to partici pate in the screening program. The effectiveness of the invitation methods was also evaluated with regard to the women s place of residence and the location and volume of the mammography units they chose. The data were collected in a prospec tive manner in the SIMP database, the official NFZ computer database for screening programs. Data analysis was performed in summary for the two year period of the first round of screening. Comparison of the first and second years of the program was also made. Results During in the region of Lower Silesia, a population of 327,249 women was eligi ble for breast cancer screening. Of them, 153,807 were examined, giving a coverage rate of 47%. For 54% of the women their decision was mostly influenced by the invitational letter (2007 vs. 2008: 59% vs. 47.6%), 11% by the media (10% vs. 12%), 11.5% by health professionals (9.8% vs. 14%), 2.5% by texting via mobile phone (2.2% vs. 2.7), and 21% by another method (19% vs. 23.7%), mainly leaflet and advertising or, inciden tally, by telephone hot line or web site. Women invited by letter, texting, or other methods (leaflet, advocacy group, women s organization, advertis ing activity of the Regional Coordinating Center for Screening Programs) were most often screened in high volume specialized breast cancer care cen ters, with 80% of those induced by letter to attend breast cancer centers vs. 11% small services vs. 9% multidisciplinary institutions, by texting: 82% vs. 9% vs. 9%, and by other methods: 83% vs. 11% vs. 6%, respectively. Women invited by

3 Recruitment Methods for Mammographic Screening 611 media rather chose small services located near their homes, with 17% in breast centers vs. 65% small services vs. 18% multidisciplinary institu tions. The women were most effectively invited to multidisciplinary institutions by medical profes sionals: 9% breast cancer centers vs. 15% small services vs. 76% multidisciplinary institutions. The data are shown in Table 1. Discussion Control randomized trials and systematic overviews clearly showed that population based mammographic screening program can signifi cantly reduce breast cancer mortality by up to 40% [5]. The published reduction rates probably vary depending on the type and intensity of the inter vention, the length of the screening interval, awareness of the disease, and the quality of screen ing. Nevertheless, the reported favorable results have led to the introduction of breast cancer screening programs for well defined populations in over twenty countries [6]. Based on a review of published evidence, the International Agency for Research on Cancer (IARC) and the European Council (EC) recommended that breast cancer screening be offered as a public health policy and should be directed to women years of age employing two view mammography performed every two years [7]. For the last decade the EU has gained new members with varying levels of experience and infrastructure for breast cancer screening. The European Parliament called for the establishment of a program by 2008 which should lead to a future 25% reduction in breast cancer mortality rates in the EU and also a reduction of the dispar ity in the survival rates between members states to 5% [8]. To achieve this goal, the Polish govern ment and National Health Fund adopted popula tion based breast cancer screening in 2007 accord ing to the IARC and EC recommendations. This is a centrally organized program supervised locally and regionally by sixteen Regional Coordinating Centers. In Lower Silesia, the area served by the present authors institution, the size of the target population is nearly twenty times higher than the European and NHSBSP minimum standards for local programs [9, 10]. A breast cancer screening program is a com plex multidisciplinary undertaking. The effective ness of a program is a function of the quality of the individual components. One of these is a high attendance rate, which can be obtained by an effective invitation system. It is emphasized that Table 1. Effectiveness of the invitation methods Tabela 1. Skuteczność metod rekrutacji Invitation method Preferred institution (Metoda rekrutacji) (%) (%) (%) (Wybrany ośrodek) Health professionals multidisciplinary institutions with (Personel ochrony zdrowia) mammography units (wieloprofilowe ZOZ y z pracownią mammografii) Media small services located near home (Media) (małe ośrodki położone blisko miejsca zamieszkania) Texting (mobile phone) high volume specialized breast cancer (SMS) treatment centers (duże specjalistyczne ośrodki diagnostyki i leczenia raka piersi) Invitational letter high volume specialized breast cancer (List zapraszający) treatment centers (duże specjalistyczne ośrodki diagnostyki i leczenia raka piersi) Other* high volume specialized breast cancer (Inne) treatment centers (duże specjalistyczne ośrodki diagnostyki i leczenia raka piersi) * leaflet, phone hot line, web site, advocacy groups, women s organizations, advertising activity of the Regional Coordinating Center for Screening Programs in Wroclaw * ulotka, infolinia, strona internetowa, organizacje kobiece, grupy wsparcia, promocja bezpośrednia prowadzona przez Wojewódzki Ośrodek Koordynujący Programy Badań Przesiewowych we Wrocławiu.

4 612 B. SZYNGLAREWICZ et al. women invited to take part in a screening program should be given adequate information communi cated in an appropriate and unbiased manner to enable them to make an informed choice about attending the screening. Communicating about cancer generates confusion which can lead to dif ficulties in the decision making process [11]. However, women invited to attend mammograph ic screening are not ill, and few of them will devel op breast cancer during the course of their lives. Thus it is very important that they know the bene fits and disadvantages of breast screening to help them make a conscious decision [12, 13]. While screening is a population based program, each individual has specific and different needs, values, and beliefs. In addition, contextual, cultural, racial, ethnic, personality, and class factors can directly impact the motivations to participate in breast cancer screening [14 16]. A good communication tool for breast cancer screening should be easy to understand, accessi ble, comprehensive, user friendly, and easy and cost effective to update, reproduce, and distribute. Information provided to women to attend the screening should be relevant, comprehensible, including the benefits as well as the risks and dis advantages, tailored to meet the needs of special groups, phase specific, and multilevel to take into account the needs of women recalled [16, 17]. It is well known what the optimal communication should be, but there is a lack of information about the most effective invitation method and the way of presenting information about screening [18]. For 54% of the women the invitational letter was a sufficient source of information that influ enced them to attend the breast cancer screening. This is usually the first communication tool direct ly sent to women which includes logistic and orga nizational information related to the screening appointment. In this study it was both the first con tact with the women and the most effective invita tion method. The invitational letter should be writ ten in a simple, clear, and readable style and include the main information about breast screen ing (purpose, test, interval, appointment, getting the result, possibility of being recalled), leaving detailed information to be provided by another communication instrument [9]. In the present study the effectiveness of health professionals and media were similar; they were chosen by 11.5% and 11% of the women, respec tively. Health professionals seem to be the most obvious source of breast cancer information. The specific and important role of health professionals in providing information about screening was recently well documented [19]. In the present study their activity in inviting to breast cancer screening was most important in multidisciplinary institutions not focused on breast cancer with gen eral practices and a mammography service. The personal and continuing relationship between gen eral practitioners and their patients puts them in a privileged position to provide relevant informa tion to these women. They are also usually trusted by their patients and their involvement in the deci sion making process is accepted by women. Moreover, they can significantly reduce misgiv ings and fear about the screening mammography. They should use jargon free language and avoid incomprehensive statistical concepts expressing risks and benefits. To overcome these problems, appropriate training in communication skills is needed [20]. The media play an important role in influenc ing opinion about the use of medical interventions such as breast screening [21]. In the present cohort their impact on decision making was especially effective in small towns and low volume mam mography services. However, it often favors the wishful view that medicine can cure all diseases and that mammography screening can detect all breast cancers. The information disseminated by the media is not evidence based and usually ignores scientific controversies, underlining only the benefits and glossing over uncertainties and adverse side effects [22]. The message from the media seems to suggest that screening is 100% accurate and that any false negative or false posi tive result must be due to error. This misunder standing leads to the perception that any breast cancer arising after a normal screening mammog raphy must have been missed and the diagnostic delay has prognostic significance. This results in high public expectations which cannot be realisti cally met by the services, causing anger, resent ment, and often litigation when this is not the case [23]. In the present cohort, texting (text messages via mobile phone) did not play a significant role in the decision to attend breast cancer screening. Few women were effectively convinced by this com munication method. The advantage of this tool is its low cost. Due to its insufficient role (probably because of the limited use of mobile phones in the target population), the need for texting in the future invitation system should be reconsidered. In over one fifth of the women the decision making process was most strongly influenced by the leaflet, advertising, telephone hot line, and web site. The leaflet was especially designed by the Regional Coordinating Center for Screening Programs in Wroclaw to complement the invita tional letter. It provides descriptive information about the screening program: the nature, purpose,

5 Recruitment Methods for Mammographic Screening 613 validity and process of the test, the screening inter val, further assessment, the result (how to obtain and interpret), the benefits, side effects (pain, dis comfort, radiation risk), and disadvantages (false positive, false negative, uncertain results). It should reinforce the information already men tioned in the invitational letter, add useful details, and show where women can get further informa tion [24]. In the group of women of the present study, the telephone hot line and web site did not play important roles. However, advertising activity was found to be an effective tool in the invitation to screening mammography. A significant improve ment in uptake due to this method was also noted by others [25]. This is clearly shown in the approx imately 20% of the participants who decided to attend the mammography as a result of the high activity of the Regional Coordinating Center in the promotion of the breast screening program. The function of women s advocacy groups (such as Europa Donna) in breast cancer screening is increasingly essential [26]. Their role includes emphasizing the need for appropriate screening and early detection, providing high quality sup portive care during and after treatment, advocating the appropriate training of health professionals, and promoting the advancement of breast cancer research [27]. Considering the present findings, the activity of these groups in this region does not seem to be sufficient, probably due to their limited budgets. Telephone hot line information was the most important for only 0.5% of the women, meaning approximately 400 individuals. For many other women it was an additional tool helpful in the decision making process. The usefulness of a hot line is increased by its being a convenient source of detailed information about the benefits and lim itations of breast cancer screening for every inter ested or hesitant woman. There is still limited use of the internet in Poland. A small minority of younger and more educated women currently use the internet to access information on breast screen ing [9]. Young females are not a target population, and well educated women can find information about breast cancer screening also in other sources. This is in concordance with presented data. However, in the future it will be useful to explore the use of the internet as a growing and increasingly accessible technology as a source of information. There is a growing concern that women invited for screening are often told about the positive aspects of screening, with any negative aspects being ignored in order to increase the attendance rate and ensure the effectiveness of the screening program [28, 29]. The information should be hon est, adequate, evidence based, accessible, unbiased, respectful, and tailored to individual needs [30]. In conclusion, the main disadvantage of the breast cancer screening program at its start was its poor coverage rate (47%), significantly lower than both the acceptable (> 70%) and desirable (> 75%) level [9]. This clearly indicates that special effort must be made to enhance the effectiveness of the invitation process. The differences in the effec tiveness of the methods between 2007 and 2008 are difficult to interpret. Invitation to screening is a continuous process. On the other hand, the two year period which was studied covers one screen ing round. For these reasons the present findings of the analysis of the summarized screening round are more important than for those for the single years separately. There is a lack of some data in the SIMP com puter base of the NFZ, for example about how many women were sent invitational letters and how many attendees received an invitation by tex ting. This is a serious limitation of this study. Moreover, no complex analysis of the most effec tive invitation method and the way of presenting information about breast cancer screening has yet been reported; therefore little is known about this problem [18]. However, based on the initial find ings it can be concluded that communication using letters, leaflets, advertising, and media should be strongly intensified as the most valuable methods to persuade women to attend the screening pro gram. The activity of health professionals is most helpful in multidisciplinary institutions with mam mography units. Texting the invitations seems to play only a marginal role in the invitation process. References [1] Didkowska J, Wojciechowska U, Tarkowski W, Zatoński W: Cancer in Poland in Memorial Skłodows ka Curie Cancer Institute, Department of Epidemiology and Cancer Prevention, Polish National Cancer Register, Warsaw 2007, [2] Błaszczyk J, Pudełko M, Cisarż K: Cancer in the Lower Silesia in the year Lower Silesian Cancer Register, Wrocław 2008, [3] Verdecchia A, Francisci S, Brenner H, Gatta G, Micheli A, Mangone L, Kunkler I, EUROCARE 4 Working Group: Recent cancer survival in Europe: a period analysis of EUROCARE 4 data. Lancet Oncol 2007, 8,

6 614 B. SZYNGLAREWICZ et al. [4] Shapiro S: Evidence on screening for breast cancer from a randomized trial. Cancer 1977, 39, [5] Tabar L, Yen MF, Vitak B, Chen HH, Smith RA, Duffy SW: Mammography service screening and mortality in breast cancer patients: 20 year follow up before and after introduction of screening. Lancet 2003, 361, [6] Shapiro S, Coleman AE, Broeders M, Codd M, de Koning H, Fracheboud J, Moss S, Paci E, Stachenko S, Ballard Barbash R, for the International Breast Cancer Screening Network (IBCS) of Pilot Projects for Breast Cancer Screening: Breast cancer screening programmes in 22 countries: current policies, administration and guidelines. Int J Epidemiol 1998, 27, [7] IARC Working Group on the Evaluation of the Cancer Preventive Strategies: Breast cancer screening. IARC Handbooks of Cancer Prevention vol. 7. IARC Press, Lyon [8] European Parliament Resolution: Breast Cancer in the European Union. OJ C 68 E ( ), p611. [9] Perry N, Broeders M, de Wolf C, Tornberg S, Holland R, von Karsa L: European guidelines for quality assur ance in breast cancer screening and diagnosis. 4 th ed., Luxembourg [10] Consolidated Guidance on Standards for the NHS Breast Screening Programme. NHS Cancer Screening Programmes, 2005 (NHSBSP Publication No 60, ver. 2). [11] Arkin EB: Cancer risk communication what we know. J Natl Cancer Inst Monogr 1999, 25, [12] Parker M: The ethics of evidence based patient choice. Health Expect 2001, 4, [13] Thornton H, Edwards A, Baum M: Women need better information about routine mammography. BMJ 2003, 327, [14] Lagerlund M, Sparen P, Thurfjell E, Ekbom A, Lambe M: Predictors of non attendance in a population based mammography screening programme; socio demographic factors and aspects of health behaviour. Eur J Cancer Prev 2000, 9, [15] Davis TC, Williams MV, Marin E, Parker RM, Glass J: Health literacy and cancer communication. CA Cancer J Clin 2002, 52, [16] Davey HM, Barrat AL, Davey E, Butow PN, Redman S, Houssami N, Salkeld GP: Medical tests: women s reported and preferred decision making roles and preferences for information on benefits, side effects and false results. Health Expect 2002, 5, [17] Brett J, Austoker J: Women who are recalled for further investigation for breast screening: psychological con sequences 3 years after recall and factors affecting re attendance. J Public Health Med 2001, 23, [18] Jepson RG, Forbes CA, Sowden AJ, Lewis RA: Increasing informed uptake and non uptake of screening: evi dence from a systematic review. Health Expect 2001, 4, [19] Giorgi D, Giordano L, Senore C, Merlino G, Negri R, Cancian M, Lerda M, Segnan N, Del Turco MR: General practitioners and mammographic screening uptake: influence of different modalities of general practi tioners participation. Tumori 2000, 86, [20] Doak CC, Doak LG, Friedell GH, Meade CD: Improving comprehension for cancer patients with low literacy skills: strategies for clinicians. Eur J Public Health 2002, 12, [21] Passalacqua R, Caminiti C, Salvagni S, Barni S, Beretta GD, Carlini P, Contu A, Constanzo F, Toscano L, Campione F: Effects of media information on cancer patients opinions, feelings, decision making process and physician patient communication. Cancer 2004, 100, [22] Jorgensen KJ, Gotzsche PC: Presentation on web sites of possible benefits and harms from screening for breast cancer; cross sectional study. BMJ 2004, 328, 148. [23] Wilson RM: Screening for breast and cervical cancer as a common cause of litigation. A false negative result may be one of an irreducible minimum of errors. BMJ 2000, 320, [24] Albert T, Chadwick S: How readable are practice leaflets? BMJ 1992, 305, [25] Cohen L, Dobson H, McGuire F: Promoting breast screening in Glasgow. Health Bull (Edinb) 2000, 58, [26] Ganz PA: Advocating for the woman with breast cancer. CA Cancer J Clin 1995, 45, [27] Buchanan M: The role of women s advocacy groups in breast cancer. Breast 2003, 12, [28] Raffle AE: Information about screening is it to achieve high uptake or to ensure informed choice? Health Expect 2001, 4, [29] Baines CJ: Mammography screening: are women really giving informed consent? J Natl Cancer Inst 2003, 95, [30] Goyder E, Barratt A, Irwig LM: Telling people about screening programmes and screening test results: how can we do it better? J Med Screen 2000, 7, Address for correspondence: Rafał Matkowski Department of Oncology and Gynaecological Oncology Clinic Wroclaw Medical University Plac Hirszfelda 12 Conflict of interest: None declared Wrocław Poland Received: Tel.: Revised: E mail: Accepted:

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