DELIVERABLE 02 - ESTONIA

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European Commission Directorate C Public Health and Risk Assessment Health & Consumer Protection Directorate general GRANT AGREEMENT n 2007121 EUROCHIP-III European Cancer Health Indicator Project-III Common Action DELIVERABLE 02 - ESTONIA Women s willingness to participate in the organised cervical cancer screening programme in Estonia, reasons for non-attendance, and knowledge about cervical cancer risk factors and cervical cancer screening: a questionnaire study in 2010 Prepared by: Kivistik A, Lang K, Anttila, A, Baili P, Veerus P. Correspondence to: Piret Veerus Department of Epidemiology and Biostatistics National Institute for Health Development Hiiu 42-11619 Tallinn - Estonia Phone: +372-6593946 Fax: +372-6593901 E_mail: piret.veerus@tai.ee This publication arises from the project EUROCHIP-3 which has received funding from the European Union in the framework of the Health Programme

INTRODUCTION Organised cervical cancer screening was introduced in Estonia in the year 2006; before that, pilot studies were carried out from 2003 to 2005. Despite several media campaigns, the attendance rates in the organised cervical cancer screening programme have remained unacceptably low (Fig 1). The aim of this study was to identify awareness of cervical cancer screening programme among women in Estonia, to investigate reasons why women do not participate in the cervical cancer screening programme and their wishes for better organization of the programme. In addition, women s awareness of cervical cancer risk factors was studied. METHODOLOGY In 2010 the Estonian Health Insurance Fund mailed 37 275 personal invitations to women aged 30 to 55 to participate in cervical cancer screening programme. Invitations, based on the data from the Estonian Population Registry, were sent to women born in 1955, 1960, 1965, 1970, 1975 and 1985. Of those women a random sample was selected and 2942 women received a questionnaire and a prepaid envelope for the response together with the screening invitation. All women got questionnaires both in the Estonian and in the Russian language. Reminders with questionnaires were sent to 1600 women who had not attended the screening programme after the first mailing. Final response rate was 36%. The questionnaire contained 21 questions and was divided into four sections: awareness about cervical cancer screening and risk factors for cervical cancer; reasons for non-participation in the national screening programme; women s preferences for the organisation of the screening programme; sociodemographic background data of the respondent. The study design was approved by the Tallinn Medical Ethics Committee.

RESULTS Response rate was 36%, altogether 1054 questionnaires were returned (69.1% in the Estonian language). Mean age of respondents 43 years. Most respondents were married or cohabiting (74.3%), actively working (76.9%), and living in big towns (69.0%). Mean number of children per respondent was 1.8. Less than half of the respondents (46.2%) had had a gynaecological check-up in past 12 months; nearly one quarter were regular smokers (22.0%); about half (49.8%) had ever used OC; most (62.4%) had never been diagnosed with a STD; many women (39.9%) had had more than five sexual partners per lifetime. An important outcome from our study was that approximately a quarter of respondents had not at all or had only partly heard of cervical cancer screening (72.3% of respondents had heard about the national screening programme). According to other studies the awareness is lower among minority groups, and also in our study the Russian-speaking respondents were less aware of the screening (Table 1). The study results also show that there is a strong need to improve women s knowledge about cervical cancer risk factors. Women do not know enough about main cervical cancer risk factors, especially low is knowledge about impact of smoking (Fig 2). The most common reason for not participating in the screening programme was a recent health control at a gynaecologist, which was more likely the reason for non-participation among Estonian than non-estonian women. Other reasons were fear to give a Pap-smear, long waiting list for appointment, clinic is far away and unsuitable reception times (Fig 3). Women from urban areas found more likely that appointment times were not suitable and queues were too long.

Most respondents (71%) were satisfied with the present organization of screening programme. They prefer the current system to register by phone to give the Pap-smear. Women prefer to give a Pap-smear at women s clinic rather than at general practitioner. To receive Pap-smear results, women prefer equally phone, e-mail, and ordinary mail. Most of them are waiting information about cervical cancer screening programme from personally sent invitations with information leaflets (Fig 4). RECOMMENDATION In conclusion, there is a need for better information sharing about cervical cancer risk factors and screening in the whole screening population. Russian-speaking women and women with a smaller number or no deliveries need special attention. To increase the effectiveness of the programme and to reduce cervical cancer burden, there is a need to decrease Pap-smears taken outside screening programme. Instead of big campaigns, women in Estonia prefer individualized and delicate information sharing; this should be taken into account when tailoring the campaigns and invitations. The results of the of this study are published in: Kivistik A, Lang K, Baili P, Anttila A, Veerus P. Women's knowledge about cervical cancer risk factors, screening, and reasons for non-participation in cervical cancer screening programme in Estonia. BMC Women s Health. 2011 Sep 28;11:43.

ANNEX: TABLES AND FIGURES Figure 1. Attendance in the cervical cancer screening programme in Estonia.

Table 1. Awareness of the cervical cancer screening programme in Estonia. RR (95% CI), crude RR (95% CI), adjusted* Age group 30, 35 yrs 1 1 40, 45 years 1.08 (0.99-1.20) 1.04 (0.95-1.14) 50, 55 years 1.02 (0.92-1.13) 1.04 (0.96-1.14) Nationality Non-Estonian 1 1 Estonian 1.65 (1.47-1.86) 1.64 (1.46-1.86) Living-place Urban 1 1 Rural 1.17 (1.09-1.26) 1.02 (0.96-1.10) Parity 0-1 1 1 >=2 1.13 (1.04-1.23) 1.09 (1.00-1.18) *Adjusted for all the dependent variables.

Figure 2. Women s awareness about risk factors of cervical cancer in Estonia.

Figure 3. Reasons for non-attendance in the screening programme (N=442).

Figure 4. Women s wishes for receiving information about the screening programme. Number Proportion Personally mailed invitation with a detailed information leaflet 784 74.8% Articles in women s magazines 198 18.9% Information by medical staff 189 18.0% Advertisements on TV 103 9.8% No wish for more information 61 5.8% Other sources (Internet, etc) 28 2.7%