Characteristics of non-responder in the cervical cancer screening program in the north of Netherlands: linkage with PALGA

In the Netherlands, due to the early detection activities, cervical cancer incidence and mortality are relatively low (1). However, in 2018, cervical cancer was the 3rd most common female cancer in women aged 15 to 44 years and the 4th leading cause of cancer deaths in the same age group (2).
The benefits of attending regular cervical cancer screening have been shown worldwide. Early detection can reduce the incidence of the advanced stages of cervical cancer, increase the survival of women with malignant cervical lesions, and reduce the costs for the health care system (3-5). Nevertheless,  44% of the women in the Netherlands invited for the cervical cancer screening (n=807629) in 2019 did not attend (6).
Some studies have already been done in the Netherlands to investigate the low attendance of cervical cancer screening. In 2012, Gok et al. showed that non-attendance to the Dutch cervical cancer screening is affected by ethnicity and screening history (7). In 2014, Bosgraaf et al. reported that the main reason for the non-attendance of the regular cervical screening is that women forgot to make an appointment (8). A systematic review regarding the determinants of non-attendance at all Dutch cancer screening programs showed that women who belong to a low socio-economic status have lower attendance, and also low knowledge about cancer is an awareness factor to non-attendance (9). Specifically for cervical cancer, women that reported to feel healthy had less priority to attend cervical screening (9). In order improve the prevention of cervical cancer, additional depth information is needed to increase the attendance to the cervical screening program.
Lifelines is a large based-population cohort that includes 10% of the population from the north of the Netherlands (10). Demographics, lifestyle, reproduction, and well-being, among other variables, have been collected, and have been linked to the nationwide network and registry of histo- and cytopathology in the Netherlands (Pathologisch-Anatomisch Landelijk Geautomatiseerd Archief - PALGA). PALGA includes every pathology laboratory in the Netherlands and contains the results of every pathology test: malignancies, benign disorders, and the results of tests in which no abnormalities were found (11). In this way, all cytology, cervix histology, and HPV report since 1996 for women who participate in Lifelines can be linked.
The dataset of PALGA was already used to identify attendees and non-attendees to the screening program in the Netherlands. Aitken et al. made two linkages to analyze attendance: 1) data from PALGA and CBS (Centraal Bureau Voor de Statistiek; 2) data from the new hrHPV-based programme (‘ScreenIT’) and the old cytology-based programme (‘CIS’). Although the number of attendees was higher in the screening dataset (ScreenIT/CIS) than PALGA, the proportion of attendees was not different in the two datasets (0.59 vs. 0.57) (12).
The primary aim of this project is to assess the compliance with cervical screening. The secondary aims of this project are: 1) To estimate the association between lifestyle and the development of CIN2+, and 2) to determine the characteristics, including lifestyle, of women with and without HPV and pap-smear abnormalities by means of the Lifelines cohort.