Women’s reasons for low attendance in the cervical cancer screening programme: experience from Estonia Piret Veerus, MD, PhD Department of epidemiology and biostatistics National Institute for Health Development Estonia For the EUROCHIP-3 project Ispra, February 27, 2012

Cervical cancer in Estonia

• Population of Estonia 1,339,681 (2012) • Among the female population, cervical cancer is the 3rd most common cancer site • ASIR(w) 18.1 per 100,000 with 187 new cases in 2007 • ASMR(w) 4.3 per 100,000 with 53 deaths in 2007 • In the age-group from 20 to 49 yrs the incidence rates more than doubled in 1980-82 to 2004 2006

Cervical cancer incidence by age groups in Estonia Incidence rate per 100,000 women 40,0 30,0 20,0 70,0 60,0 50,0 10,0 0,0 1980 1982 1983 1985 1986 1988 1989 1991 1992 1994 1995 1997 1998 2000 2001 2003 2004 2006 Estonian Cancer Registry 20-29 30-39 40-49 50-59 60-69 70+

Cervical cancer screening in Estonia • Organised nationwide cervical screening started in 2006, pilot studies in 2003 • Target group women aged 30 to 59 years • Screening interval 5 yrs after a negative result • Women diagnosed with cervical cancer, without health insurance and those having had a Pap-smear in past 12 months excluded from the list of invitees • Trained midwives take Pap-smears at 20 clinics, tests performed at 7 labs • Pathological results handled according to clinical guidelines • Lab quality assurance carried out in 2007

Attendance in the cervical cancer screening programme in Estonia 45000 38578 40000 38359 37276 34973 35000 34845 30123 30000 25000 20000 13887 15000 12960 10000 5000 2549 0 2003 5264 6552 6249 8004 7670 12541 13127 2004 2005 2006 2007 2008 2009 2010 2011 Invited Participated

Aims of the present study

To study: • reasons for low attendance in the organised cervical cancer screening programme • women’s wishes for improving the screening programme • the present knowledge about cervical cancer risk factors and screening among the screening target group

Methods

• Anonymous postal survey to a random sample of 2,942 women in the screening population together with the invitation to screening and a prepaid return envelope; reminders to 1,600 non-attenders in the screening programme • 21 questions in the Estonian and Russian language respondent’s background information, general health behaviour, knowledge about cervical cancer and screening, attitude about screening activities and wishes for better organisation of the screening programme

Results: respondents • Response rate 36%, altogether 1054 questionnaires returned (69.1% in Estonian) • Mean age of respondents 43 years • Most respondents married or cohabiting (74.3%), actively working (76.9%), and living in big towns (69.0%) • Mean number of children per respondent 1.8

• Less than half (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

Results: women’s awareness about risk factors of cervical cancer

Results: awareness about cervical cancer screening 72.3% of respondents were aware of screening RR (95% CI), crude RR (95% CI), adjusted Age group 30, 35 yrs 40, 45 years 50, 55 years Nationality Non-Estonian Estonian Living-place Urban Rural Parity 0-1 >=2 1 1.08 (0.99-1.20) 1.02 (0.92-1.13) 1 1.65 (1.47-1.86) 1 1.17 (1.09-1.26) 1 1.13 (1.04-1.23) 1 1.04 (0.95-1.14) 1.04 (0.96-1.14) 1 1.64 (1.46-1.86) 1 1.02 (0.96-1.10) 1 1.09 (1.00-1.18)

Results: willingness to attend the screening programme RR (95% CI), crude RR (95% CI), adjusted Age group 30, 35 yrs 40, 45 yrs 50, 55 yrs Nationality Estonian Non-Estonian Living-place Urban Town Parity 0-1 >=2 1 1.12 (1.07-2.28) 1.06 (0.75-1.50) 1 1.00 (0.93-1.08) 1 0.99 (0.92-1.07) 1 1.02 (0.94-1.09) 1 1.13 (1.03-1.23) 1.03 (0.93-1.13) 1 1.02 (0.94-1.10) 1 1.02 (0.94-1.11) 1 0.99 (0.92-1.06)

Results: reasons for non attendance in the screening programme (N=442) 11,8% Other reasons It is not necessary Uterus is removed Do not have time Appointment times not suitable Clinic is far away Waiting list too long Fear to give a Pap-smear Recent visit to gynaecologist 2,0% 8,1% 10,4% 11,8% 12,7% 12,9% 14,3% 42,3%

Results: women’s wishes to improve the screening programme • Most respondents (71

%)

were satisfied with the current organisation of the programme • Most of them wanted to make the appointment by phone (83.2%) and to have the test taken by a midwife (92.1%) • Women wanted to receive information about the test result by phone (33.9%), by e-mail (34.3%) or by ordinary mail (29

%

) • Most respondents (74.8%) wanted to recieve information about screening by mail together with the personal invitation

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

Conclusions

• In Estonia, women prefer to be personally and delicately informed about cervical cancer screening • Minorities need more information about the screening programme in their mother langauage • All women need more detailed information about the programme, and encouragement for participation • Better organisation of screening services has to be provided • Opportunistic smears outsied the programme are discouraged

Thank you!

• 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 2011,11:43.