Prostate Cancer Outcomes Norway
Background
Some cancer survivors experience adverse effects which impact their qualiy of life after cancer treatment.
The aim of this pilot study is to find concrete measures to improve prostate cancer patients’ quality of life.
The results will be published in the annual National Prostate Cancer Registry report, on this website and in peer-reviewed international journals.This Movember funded study follows prostate cancer patients’ state of health for several years.
Invitation, participation and consent
All men diagnosed with prostate cancer during the period 1 January 2017 to 31 December 2019 were invited to participate in the survey. A control group consisting of controls with no previous history of prostate cancer were also invited. The first invitation was sent electronically, or by regular (paper) mail to those without a digital mailbox. Everyone could respond electronically, regardless of how they received the survey.The first invitation to participate in the survey was sent out within two months of the diagnosis. Invitation and questionnaire for the second round were sent out after one year. The third round of the survey was sent out three years after inclusion and is still ongoing.
Participation in the study is voluntary. Consent to participation may be withdrawn at any time. Consent can be withdrawn at https://minside.kreftregisteret.no, or by letter (postal address at the bottom of the page). A withdrawal will delete all the collected information in the survey from the projects’ database and no more reminders is sent out.
The survey
The survey contains four main parts:
1. Background
2. General state of health
3. Typical symptoms for cancer patients
4. Typical symptoms that, in varying degree, occur in men who are being treated or have been treated for prostate cancer.
The aim of the survey is to get a comprehensive overview of the individual participants’ state of health. To be able to compare the results from the prostate cancer patients with results from the control group, the study contains general, cancer-specific and prostate cancer-specific questions.
Privacy
The Regional Committee for Medical and Health Research Ethics (REK) approved the study in 2015 (ref. No. 2015/1297 / REK south-east C). The approval lasts until 31.12.2028. All personal information is confidential, only specialized authorized employees can identify individuals. Individuals will not be identifiable in the published results.
Oslo University Hospital HF/ The Norwegian Cancer registry and project manager Tom Børge Johannesen is responsible to ensure legal processing of the data. This project has a legal basis in the EU Privacy Regulation Article 6 (1) (a) and Article 9 (2) (a).
Data sharing and transfers abroad
By participating in the project, you give consent that information can be transferred abroad. This is a part of research collaboration and publication.
Unidentifiable information may be disclosed to Monash University, Australia. The information will be used in an international research project seeking to improve the treatment and follow-up of prostate cancer by mapping patients' quality of life. The project manager will ensure that information is securely handled, in line with European privacy legislation. No personally identifiable information will be disclosed.
Sharing of data with health institutions
By participating in the study, the participants consent that information from the questionnaires can be shared with the health institution (hospital / GP's office, etc.) that follow up the patient. The information might be used as a part of quality assurrance of the given treatment. Health institutions requesting information from the questionnaires can only use the information for other purposes (e.g. research) if they have the necessary basis for processing (REK approval, license from the Norwegian Data Protection Authority or recommendation from a privacy representative).
