To all women

 

Why should I take my Pap smear?

 

The risk of getting cervical cancer decreases if you regularly participate in smear tests. There are good chances to detect any cell changes at an early stage, so that these can be monitored and treated in a manner that does the least possible disruption and less risk of complications in the future. You can read more here:

http://www.cellprov.se

http://www.1177.se/Fakta-och-rad/Undersokningar/Gynekologisk-cellprovtagning/

 

What is NKCx?

 

Swedish National Cervical Screening Registry (NKCx) is a register in which information on all types of cell sample taken from the cervix are saved. This includes information on: invitation to screening tests, cytological smear, results of HPV tests and tissue samples. The major part consists of cell samples from healthy women taken in screening purposes. Of course data is also saved for the samples where suspected cell change exists, those coming from patients under investigation, or those taken to follow up a treatment. NKCx differs in this way from other quality registers as the focus is prevention, but not treatment of, cervical cancer. See also:

http://www.kvalitetsregister.se/sekundarnavigering/omnationellakvalitetsregister/fordigsompatient.4.7b127e9b142b85fdb6c143.html

http://www.1177.se/Regler-och-rattigheter/Nationella-kvalitetsregister/

http://www.cancercentrum.se/sv/INCA/kvalitetsregister/gyn/

 

Why does NKCx exist, and why do we need to collect your sample data?

 

With the help of the data stored in NKCx, the quality of screening and treatment of lesions can be evaluated, and improved through feedback to the caregiver. Changes to the current program can be introduced and evaluated in a systematic way, to ensure that the changes mean a real improvement for women participating in cervical smear checks.

 

NKCx saves data from all over Sweden, which enables a comparison between counties to ensure that the screening works equally good at all locations in Sweden.

 

A high coverage ratio (or simply expressed that the test results from all the participating women are saved) permits representative evaluations that reflects the reality well, and the large amount of smear gives us the ability to also answer questions about rare diseases / events.

 

NKCx data are also used regularly in various research projects, to evaluate, for example, how effective the screening program is, how other diagnoses affect participation in screening, if there are connections between cervical cancer and other diseases, and to follow up vaccination against HPV.

 

The data about your Pap smears is important by allowing monitoring, feedback on and to evaluate measures to improve the smear control and enables increased knowledge about cervical cancer and cell changes and therefore benefits all women in the future.

 

How does NKCx handle your personal data?

 

NKCx handles your personal data in a responsible manner. Only a few employees have access to personal information and these are never left out to someone else. Your data is never in any context shown on a personal level, but only in aggregate statistics, and thus it can never be derived to you as a person. If you want to know more, feel free to contact the registry's employees.

 

What applies to you as a screening participant / patient?

 

Your participation is voluntary - you can decline.

At any time, you can cancel your participation.

You have the right to take part of what is registered about you.

You can request removal/amendment of your personal data

You are protected by confidentiality.

 

What applies if you are having cell changes?

 

If cell changes are detected during the screening, you will receive an invitation to a follow-up. It is important that you attend follow-up examination. If you have questions or comments regarding this, refer to your health care provider or 1177.

My county has just introduced the HPV test, can I trust the outcome and what will it mean for me?

Currently, HPV testing is used in screening only in Uppsala and partly in Stockholm / Gotland. The results of the HPV test is reported as negative or positive for low- or high-risk HPV. A positive HPV test does not automatically mean that you have or will have a cell change or cancer, as most HPV infections heal without causing serious cell changes. If a repeated HPV test after three years remain positive for the same HPV type, an extra cytology investigation is performed (and if fixed cell changes also a biopsy). In contrast, a negative result means that with large certainty you will not will develop a cell change within the next few years. You can then wait until the next screening test. In many counties HPV Tests are also used to investigate slighter cell changes. Here, a biopsy is also performed if these are positive high-risk HPV.

Glossary

HPV (Human Papilloma Virus): a sexually transmitted virus that can cause cell changes on the cervix or cervical cancer

Quality register: a register (personal data saved) with the purpose of developing and securing care quality, so that the experience for you as a patient gets better.

Screening: a regular preventive examination of healthy individuals (here women), designed to prevent the outbreak or allow early detection of disease (in this case, cervical cancer) and thus improving the patient's chances of being healthy and getting fewer complications (eg. to preserve fertility)