Change search
ReferencesLink to record
Permanent link

Direct link
A study of patients not registered in the Swedish cancer register but reported to the Swedish register of palliative care 2009 as deceased due to cancer
Umeå University, Faculty of Medicine, Department of Radiation Sciences.
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
Umeå University, Faculty of Medicine, Department of Radiation Sciences, Oncology.
2014 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 53, no 3, 414-419 p.Article in journal (Refereed) Published
Abstract [en]

Background. The Swedish Cancer Register (SCR), an old and reputable health data register, contributes a large amount of data used in research. The quality of the research using SCR data depends on the completeness and validity of the register. In Sweden, every healthcare provider is obligated to report newly detected cases of cancer to the SCR regardless of the diagnostic basis. This study aimed to clarify whether there is an under-reporting of patients with cancer to the SCR or an over-reporting of cancer as cause of death to the SRPC as all patients do not appear in both registers. In addition, this study looked at the distribution of under-reporting or over-reporting related to age, sex, type of cancer, diagnostic basis, and department responsible for cancer diagnosis. Material and methods. Of the 10 559 patients whose cause of death was cancer as reported to the SRPC (2009), 1394 patients (13.2%) were not registered in the SCR (1958-2009). Medical records from a representative sample of 203 patients were collected and reviewed. Results. The medical records for 193 patients were obtained; of those, 183 (95%) patients should have been reported to the SCR. Among these, radiologic investigation was the most common basis for diagnosis and there was a significant over-representation of cancer of the pancreas, lung, liver, and bile ducts. Discussion. This study cannot quantify the completeness of the SCR. The findings indicate that 12.5% of patients dying of cancer in palliative care are not reported, that specialized hospital departments diagnose the vast majority of the unreported patients, and that routines for how to report patients to the SCR based on radiological findings should be revised.

Place, publisher, year, edition, pages
Informa Healthcare, 2014. Vol. 53, no 3, 414-419 p.
National Category
Cancer and Oncology
URN: urn:nbn:se:umu:diva-87390DOI: 10.3109/0284186X.2013.819115ISI: 000331804200017OAI: diva2:709674
Available from: 2014-04-02 Created: 2014-03-31 Last updated: 2014-04-02Bibliographically approved

Open Access in DiVA

No full text

Other links

Publisher's full text

Search in DiVA

By author/editor
Nilsson, MartinTavelin, BjörnAxelsson, Bertil
By organisation
Department of Radiation SciencesOncology
In the same journal
Acta Oncologica
Cancer and Oncology

Search outside of DiVA

GoogleGoogle Scholar
The number of downloads is the sum of all downloads of full texts. It may include eg previous versions that are now no longer available

Altmetric score

Total: 33 hits
ReferencesLink to record
Permanent link

Direct link