In 2013 it was uncovered that more than 19 000 women in the Central Denmark Region (CDR) had been unsubscribed from the Danish National Cervical Cancer Screening Programme (NCCSP) without a clear indication that this was intended, and therefore had not received invitations or reminders as recommended and announced by the authorities.
We report the essence of this unintended episode and aim to describe the outcomes of re-establishing invitations in terms of participation rate and screening results. Furthermore, we report on adjudications of compensations to women affected by the episode, and covering of the episode in the press.
The initiatives effectuated to rectify the error targeted three groups of women:
1. Women still in the screening age (23-64 years) were reassigned the programme
2. Women no longer in the screening age (above 64 years) were given the possibility of a final cervical cancer screening test (HPV testing)
3. Women diagnosed with Cancer Colli Uteri (CCU) after the date of the un-subscription were notified about the possibility to report the injury to the Danish Patient Compensation Association. If the women were no longer alive, their surviving relatives were contacted.
The proportion of women being tested within six months after invitation/last reminder was measured along with the corresponding screening result in terms of cytology or HPV test result. These data were obtained from the Danish Pathology Databank.
Information on number of patients reporting injuries due to unintended un-subscription, adjudications and the size of the compensations was continuously also obtained. Information of coverage of the episode in the press was obtained from a Danish media monitoring service.
Of the 10 094 women still in the screening age, 37.7% had been tested despite no invitations. A total of 21.6% unsubscribed the programme again within one year, mainly because they did not want to participate (72.9%) or had total hysterectomy (24.8%). A total of 2 660 women were tested, 94.6% of the cytologies were normal, 1.5% showed HSIL and 0.04% showed cervical cancer.
Of the women above the screening age, 12.7% were tested. The proportion of women testing positive for HPV 16 or 18 was highest in the age groups 65-69 (1.4%) and 75-79 (1.9%).
Data on compensations and covering of the episode in the press will be presented at the conference.
This episode provides insight into the mechanisms of an organised screening programme showing that it has a life on its own independent of invitations. Furthermore, it shows that lacking invitations to screening are ranked alongside other adverse effects in the health care system.