Screening for breast and cervical cancer in a large German city: participation, motivation and knowledge of risk factors
Stefanie J. Klug, Melanie Hetzer and Maria BlettnerInstitute of Medical Biometry, Epidemiology and Informatics (IMBEI), University Hospital, University of Mainz, 55101 Mainz, Germany
Correspondence: Dr. Stefanie Klug, MPH Institute of Medical Biometry, Epidemiology and Informatics (IMBEI), University Hospital, University of Mainz 55101 Mainz, Germany, tel: +0049-6131-17-2022, fax: +0049-6131-17-2968, Email: klug{at}imbei.uni-mainz.de
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Abstract |
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Background: Few data exist on attendance for cervical and breast cancer screening, breast self-examination and knowledge about risk factors for cervical cancer among German women. A population-based survey was performed in the city of Bielefeld in Germany. Method: A questionnaire was mailed to 1500 randomly selected women age 25 to 75. Of those, 540 questionnaires were returned and 532 were analysed. Results: Women participating in the survey considered themselves well informed about possibilities for early detection of breast cancer (84.0%). Most information was received from office-based gynaecologists (82.4%). 82.8% had a breast examination by a medical doctor annually and 43.1% practised breast self-examination every month. 55.5% of the women had had a mammography, 72.5% gave screening as a reason for a mammogram. Age at first mammography was associated with social class (p<0.001). Cytological smears for early detection of cervical cancer were common and obtained frequently. Age at first Pap smear was associated with social class (p<0.001). 69.9% of the women considered themselves insufficiently informed on risk factors for cervical cancer. Women were poorly informed about risk factors for cervical cancer. Only 3.2% knew that infection with human papillomavirus (HPV) is a risk factor for cervical cancer. Giving a correct answer was associated with social class (p<0.001) but not with age. Conclusion: Rates of opportunistic mammography screening were high in the study population. Information on risk factors for cervical cancer was scarce. Efforts should be made to improve women's knowledge about risk factors for cervical cancer.
Key points
- What do German women know about screening for breast and cervical cancer offered annually by health insurances at no cost?
- Most women participating in the survey considered themselves well informed about possibilities for early detection of breast cancer.
- Over two third of the women considered themselves insufficiently informed on risk factors for cervical cancer.
- Only 3.2% of the women knew that infection with human papillomavirus (HPV) is a risk factor for cervical cancer.
- There is a pressing need in Germany for better education of the general public on risk factors for cervical cancer.
Keywords: attendance, breast cancer screening, cervical cancer screening, HPV infection, mammography
Germany is one of the countries in Western Europe with the highest mortality and incidence rates for cervical cancer and intermediate rates for breast cancer.1 Since 1971 all women have been eligible for a yearly gynaecological ‘cancer early detection exam’ (KFU) which is covered by statutory health insurance. Starting at age 20, KFU includes a cytological smear (Pap smear) for early detection of cervical cancer and its precursors, and a gynaecological examination. From age 30, inspection and palpation of the breasts and instructions for breast self-examination (BSE) are included. As over 90% of the female population is covered by statutory health insurance, about 30.5 million women are eligible for an annual KFU.2 KFU is always performed by medical doctors, mostly by office-based gynaecologists. Screening is not organized, as there is no invitation to undertake KFU. Each woman can arrange an annual appointment with her gynaecologist or may have a KFU on a visit to a gynaecologist for another reason. Women who do not or no longer see a gynaecologist are not screened for cervical or breast cancer. Thus, older women and women in lower social classes are less likely to be screened.3
Few data are available on participation rates in KFU in Germany.4,5 The annual participation rate released by Kassenärztliche Bundesvereinigung (KBV), the association for medical doctors who hold a licence to treat patients with statutory health insurance, was 51% in 1997, up from 30–35% in the previous two decades.6 The results of the German National Health Interview and Examination Survey indicated a participation rate of 36.5% in 1997.3 Women in upper social class participated more frequently than women in lower social classes. Participation rate dropped sharply among women over 55. In a health survey conducted in the State of Northrhine-Westfalia, 56.5% of participating women had a KFU during the year of the survey or in the previous year.7
Mammography has not been recommended as a screening procedure in Germany and was not covered by statutory health insurance when this study was conducted. However, rates of opportunistic mammography screening were assumed to be high.8,9 Since January 2003, statutory health insurance in Germany has covered mammography screening every two years for women aged 50 to 69.10
Human papillomavirus (HPV), a sexually transmitted virus, has been found to be the major risk factor for development of cervical cancer, and also is a necessary cause.11–16 Additionally, infection with HPV causes benign genital warts.17 Other risk factors for cervical cancer, partly correlated with HPV infection, are age, social class, sexual and reproductive behaviour, such as age at first intercourse, number of sex partners, number of children, and suppressed immune function. The role of smoking, use of oral contraceptives, genetic predisposition, diet and other sexually transmitted diseases is controversial.17,18
Information on participation, motivation and knowledge of German women regarding early detection examinations and risk factors for cervical and breast cancer is scarce. We performed a population-based survey in the city of Bielefeld to obtain information on participation in cancer detection examinations (KFU) for the early detection of breast and cervical cancer. We also documented women's knowledge about availability of such examinations, their sources of information and their motivation to attend screening. Knowledge about risk factors for cervical cancer, such as HPV, was documented for the first time in Germany.
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Methods |
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Study population
We studied women aged 25–75 with German citizenship and residing in the city of Bielefeld in Northrhine-Westfalia in north-western Germany. An epidemiological questionnaire and a prepaid return envelope were sent by mail to a random sample of 1500 women. This survey was performed in 2000 when the city had 323 000 citizens, including 107 000 women in the eligible age group. Addresses and age were obtained for 3008 randomly selected women from the mandatory population registry, of whom 2688 women (89.3%) fulfilled the criterion of German citizenship, which was selected to avoid language difficulties with the questionnaire. Of these, 1500 women were randomly chosen, since 500 questionnaires were targeted for analysis and participation rate was estimated to be about 40%.
Questionnaire
The questionnaire sought demographic information, general information on health status and participation in screening for breast and cervical cancer, and detailed information on cytological smears, HPV testing, breast self-examination (BSE), breast examination by a medical doctor, mammography, knowledge about available screening methods and risk factors, such as HPV, as well as motivation for participation in screening.
Analysis
The main hypothesis was that participation rates and knowledge about risk factors differ by age and social class. Descriptive statistics with cross-tabulations and 
2 testing were performed. Missing values were excluded from calculation of p-values and p-values below 0.05 were considered statistically significant.
For categorization of social class, net monthly household income was divided by number of persons per household. The results were assigned to one of seven categories from lowest to highest income. A combined variable ‘highest degree’, including both school education and occupational education, was also grouped into seven categories from lowest to highest. Both variables were combined to generate a social class index, modified from Winkler 19 and adapted for an all-female study population.20 Resulting from this index, which is the sum of the weighted income score and highest degree score, women were assigned to upper, middle and lower social class.
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Results |
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540 questionnaires were returned by mail, giving a response rate of 36%. Two questionnaires were excluded because the women had moved from the study area, and six questionnaires were incomplete, leaving 532 questionnaires for analysis.
Socio-demographic information
Socio-demographic information for the study population is presented in table 1. Age distribution was virtually the same as that of the random sample of women who received the questionnaire and of the overall female population of the city of Bielefeld.21
Social class was assigned for 483 women and was associated with age (p<0.001). Older women were more likely categorized in lower social class, while younger women were found in middle or upper social class more often.
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Screening for cervical cancer |
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Six women in the study population, age 42 to 51 years, had cervical cancer. One apparently always had normal smears and went for cytological screening regularly. None of the six women had been tested for HPV.
Cytological smears
Almost all women had at least one cytological smear (table 2). Of the women who never had a cytological smear, two said that they found the procedure too intimate and embarrassing, one had a hysterectomy at young age due to birth complications and one did not give a reason. Seven of the 25 women who did not know whether they ever had a cytological smear were not aware that such an examination existed.
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Most women had their first Pap smear between age 20 and 29 years (table 2), while 10.2% had their first smear between 40 and 49 years and 2.6% at age 50 or later; 13.4% of the women had their first Pap smear before age 20. Age at first Pap smear was associated with social class (table 2). Most women in the study group had a Pap smear at least once a year and only a few had a smear less frequently than every five years.
Most of the woman had normal Pap smears (table 2), although for 8.0% of the women at least one Pap smear had to be repeated or therapy was needed due to an abnormal Pap smear. Reasons for a repeated smear or therapy was most often dysplasia. Only three women gave HPV infection as the reason.
HPV testing
Few women had ever had an HPV test, with no differences between age groups. Half of the women in the study population did not know if an HPV test had ever been performed (table 2).
Twenty-two women reported that they had genital warts. Only two of these women knew that they had been tested for HPV, and only one knew that she was HPV positive.
Information about risk factors for the development of cervical cancer
Women were asked whether they had sufficient information and education about risk factors for developing cervical cancer. Only 22.0% answered ‘yes’, while the majority (69.9%) considered that they had insufficient information; 8.1% of the women gave no answer. Satisfaction with information about risk factors was associated with age (p<0.001) and social class (p<0.001); 57.3% of older women and only 13.4% of younger women considered that they knew enough about the risk factors. However, half of the missing values were due to women 65 and older. Women who considered that they had sufficient information and education about the risk factors were asked to name their sources (multiple answers possible): most women had received their information from office-based gynaecologists (69.2%), from the media (53.8%), including newspaper, journals, leaflets (33.3%), and radio and television (20.5%), or through their work or education (12.8%). General practitioners (10.3%), relatives or friends (6.0%) and health insurance (0.9%) were less important sources of information.
Risk factors
Women were asked whether they knew risk factors for the development of cervical cancer (table 3). Two-thirds of the women in the study did not know any risk factors, with no differences by social class, but including 74.7% of the women below age 35. Women who gave no answer were more likely to be older and to belong to the lower social class.
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Women were asked to name risk factors familiar to them (table 3). Risk factors such as ‘sex with frequently changing male partners’, ‘oral contraceptives’, ‘sex at early age’ and ‘smoking’ were counted as correct. Answers such as ‘genetic disposition’, ‘inflammation’ or ‘public swimming pools’ were classified as incorrect. At least one correct answer was given by 62 women. Only 17 women knew that ‘a virus’, ‘papillomavirus’ or ‘HPV’ is a risk factor for cervical cancer. Giving a correct answer was associated with social class (p<0.001) but not with age. Although, half of the 17 women who knew that a virus (HPV) is involved in the development of cervical cancer were below 35 years old.
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Screening for breast cancer |
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In the study population, 15 women aged between 38 and 74 years had breast cancer and 95 women (17.9%) had a family history of breast cancer, with a mother (27.4%), aunt (26.3%) or grandmother (19.0%) affected.
Information and knowledge on possibilities of early detection
Women were asked whether they were sufficiently informed about possibilities available for the early detection of breast cancer. Most women (84.0%) considered that they were properly informed, with no differences by age or social class. These women were asked for their source of information (multiple answers possible): Most women received information from office-based gynaecologists (82.4%). Only 39 had information from their general practitioner (9.4%), of whom most were above 55 years of age (66.7%) and in the lower social class (47.2%). Much information was obtained from the media (64.0%), including newspapers, journals and leaflets (39.1%), radio and television (24.9%). Less important sources were relatives or friends (16.9%), work or education (4.8%) and health insurance (n=1).
Breast self-examination and breast examination by a medical doctor
Most women in the study population examined their breasts themselves at least once a month or once a year (table 4) 15.4% of the women had never examined their breasts.
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Almost all women had at least one breast examination by a medical doctor, half of them when they were under 30 years (table 4). 82.8% of the women had expert breast examination at least once a year. In 94.0% of the women these examinations were performed by gynaecologists, in 6.0% by GPs or radiologists. Age at first breast examination was associated with social class.
Mammography
Although most women knew the term mammography, 6.0% did not know what it was. More than half of the women had at least one mammograph (table 4). Ever having had a mammograph was associated with older age, as 61.7% were over 50 years. Nevertheless, 18.0% of the women were under 30 when they had their first mammography and 32.2% were between 30 and 39 years old. In total, 225 of the 295 women (76.3%) who ever had a mammograph were under 50 years of age at first mammography. Age at first mammography was associated with social class (table 4). Most women from upper (75.4%) and middle (56.3%) class had their first mammograph before age 40, compared with women in the lower social class, where 60.6% were 40 years or older. Only 7.0% of the women in the upper social class had their first mammograph at or past age 50 compared with 29.8% in the lower class.
One-third of the women who had ever had a mammograph only had one so far (table 4). Of these women 63.0% were under 50 years of age. Only 5.8% of the women in the study population had a mammograph every year and 37.0% had one every two or three years. Almost one-third of the women who had a mammograph regularly at least every three years were under 50 years of age.
Women who had ever had a mammograph were also asked for reasons for undergoing mammography. Almost three-quarters said that mammography had been performed for breast cancer screening (table 5). Note that of these women 65.4% were below age 50 at first mammography. Furthermore, 34.5% belonged to lower social class, and 44.6% and 20.9% to middle and upper class, respectively.
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Discussion |
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Participation in KFU was high in the study population. Knowledge about available procedures for early detection of breast cancer were good and rates of BSE were high. The rates of opportunistic mammography screening for breast cancer were also high. In contrast, knowledge about risk factors for cervical cancer, in particular about HPV infection, was poor.
The relatively low response rate (36%) might have introduced selection bias due to self-selection of responding women. Our results are therefore probably not representative of the population and participation rates should be interpreted with caution. However, important information can be drawn from the results of internal analysis of the study population, in particular since only few data exist on these issues for German women. Potential selection bias did not affect the age distribution.
The rates of participation in Pap smear screening and breast examination by medical doctors in this study population were higher than those suggested by other sources.3,6,7 However, a survey conducted in Bavaria and a study conducted in Düsseldorf in Northrhine-Westfalia found similarly high participation rates.8,22 Selection might have occurred towards women who participated in KFU more regularly than the general population.
Over 80% of the women in the study population reported a Pap smear once a year or more often and almost all had had a Pap smear. Recall bias seems unlikely; however, both underestimation and overestimation have been reported on the basis of self-reported Pap smear history.23–25 In Germany, misconceptions about Pap smear screening status might arise from some uncertainty about whether a gynaecological smear was taken for cancer detection or for exclusion of vaginal infection, since both are taken by office-based gynaecologists.
Age at first Pap smear was associated with social class in this study population, women in the lower social class were older when they first had a Pap smear. A cohort effect is possible, since Pap smear screening had begun officially in Germany only in 1971. Nevertheless, there was Pap smear screening before introduction of the programme, and other results support association between attendance for cervical cancer screening and social class.3,26–28
Very few women knew risk factors for cervical cancer, even in this population, which may have been selected towards women who were more interested in issues of health and early detection of cancer. Less than one-third of the study population reported knowledge about risk factors; of these, 11.7% named risk factors correctly, but only 3.2% knew about HPV. Knowledge that HPV infection is the main risk factor for cervical cancer was not manifested in the study population. In view of the likelihood of selection in the study population, it must be assumed that knowledge about risk factors for cervical cancer and in particular about HPV infection is even more scarce in the general population. Lack of knowledge about risk factors for cervical cancer reduces participation in cervical cancer screening,29 and there is a pressing need in Germany for better information and education of the general public. Office-based gynaecologists and the media could be used to disseminate information about risk factors and to motivate attendance. General practitioners and health insurance companies have the potential to reach women, especially in the lower social classes.
Women in the study population considered that they were well informed about available opportunities for early breast cancer detection. Rate for monthly BSE was 43%. Possibly, fear of breast cancer which might be stronger in older than in younger women and education on early detection was a motivation for this behaviour.30,31 The rates of BSE seemed unchanged in Germany in the past ten years where similar or higher rates had been reported.32,33
Most women had received a medical doctor breast examination which is part of the KFU covered by health insurance and more than half of the women had a breast examination before age 30.
Interestingly, 73% of the women gave screening as the reason for mammography, although no mammography screening was offered at that time. It should be recognized that the impact on reduction of breast cancer mortality of the newly introduced population-based mammography screening programme which started in Germany in January 2003 may not be as high as expected, due to the estimated high rates of opportunistic screening. Nevertheless, it can be anticipated that within the framework of the new programme, quality of mammography will improve and be adapted towards the European guidelines for quality assurance.34 Also, it is very important that there will be systematic and personal invitation of women in the eligible age group from 50 to 69 years within the new programme. Many women in the study population had their first or regular mammography when they were under 50 years of age. A survey in Bavaria showed similarly high rates of mammography in women under age 50,8 although mammography screening before this age is not recommended.
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Acknowledgments |
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We would like to thank Eugenia Betancourt-Hain, Martina Meyer and Thomas Schafft for technical assistance during the conduct of the study. The work was funded by the University of Bielefeld.
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Footnotes |
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Source of support: University of Bielefeld funding.
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References |
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