A nationwide, prospective collection of patient reported outcomes in the Cancer Registry of Norway
Background: The Cancer Registry of Norway (CRN) has collected data on all Norwegian cancer patients from health providers since 1952. To assess cancer patients’ self-reported late effects and health related quality of life(HRQoL) after treatment, the CRN started collecting data on Patient Reported Outcomes (PROs) in 2020.
Objectives: To present the infrastructure for the CRN’s national health survey collection of PROs and describe some experiences of the first two years of data collection. Methods: In 2021, the CRN invited patients newly diagnosed with prostate cancer, breast cancer, colorectal cancer, or malignant melanoma to participate in the three-year digital health survey “Population survey on health and quality of life”. Patients were invited at least 21 days after diagnosis and within 150 days of the diagnosis. A control group consisting of individuals with no history of the cancer in question was randomly drawn from the National Population Register. Descriptive statistics regarding invitations and participation are presented.
Results: A total of 15 641 patients and 15 187 individuals in the control group were identified as eligible for participation in 2021. A total of 12 297 (82%) of the patients and 11 534 (76%) of the controls used one or more of the digital solutions the CRN used to distribute the surveys and received an invitation to the survey. Overall, 6 091 (47%) of the patients and 3 718 (32%) of the controls participated, with variation across the cancer types.
Discussion: Self-reported late effects and HRQoL after contemporary cancer treatments can be studied among participants in these nationwide longitudinal surveys which continuously include newly diagnosed patients. The response rates at baseline are still somewhat low and vary between 41% and 51% among the cancer patients. Selection bias may be a challenge, as half of (or less) than the individuals invited in 2021, chose to participate.
Conclusions: The infrastructure for a national, prospective survey collection of PROs is in place and in use. The CRN plans to analyse the representativeness and validity of the PROs data. The goals are to include PROs in surveys covering all the clinical registries at the CRN, and that the PROs collected by the CRN can be used in research and quality improvement of the health services offered to cancer patients.
How to Cite
Copyright (c) 2022 Ylva Maria Gjelsvik
This work is licensed under a Creative Commons Attribution 4.0 International License.
Norsk Epidemiologi licenses all content of the journal under a Creative Commons Attribution (CC-BY) licence. This means, among other things, that anyone is free to copy and distribute the content, as long as they give proper credit to the author(s) and the journal. For further information, see Creative Commons website for human readable or lawyer readable versions.
Authors who publish with this journal agree to the following terms:
1. Authors retain copyright and grant the journal right of first publication with the work simultaneously licensed under a Creative Commons Attribution License that allows others to share the work with an acknowledgement of the work's authorship and initial publication in this journal.
2. Authors are able to enter into separate, additional contractual arrangements for the non-exclusive distribution of the journal's published version of the work (e.g., post it to an institutional repository or publish it in a book), with an acknowledgement of its initial publication in this journal.
3. Authors are permitted and encouraged to post their work online (e.g., in institutional repositories or on their website) prior to and during the submission process, as it can lead to productive exchanges, as well as earlier and greater citation of published work (See The Effect of Open Access).