Using clinical cancer registry data for estimation of quality indicators: Results from the Norwegian breast cancer registry

Olaf Johan Hartmann-Johnsen, Rolf Kåresen, Ellen Schlichting, Bjorn Naume, Jan F. Nygård

Research output: Contribution to journalArticle

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Abstract

Introduction: Increased focus on quality indicators and the use of clinical registries for breast cancer for real world studies have shown higher compliance to recommended therapy and better survival. In 2010, the European Society of Breast Cancer Specialist (EUSOMA) proposed quality indicators (QI) covering diagnosis, treatment and follow-up. To become a EUSOMA certified Breast Cancer Unit, 14 specified quality indicators, in addition to other requirements, need to be met. To evaluate the compliance and results of recommended treatment in breast cancer care in Norway and to improve the quality of epidemiological data, the Cancer Registry of Norway (CRN) in cooperation with the Norwegian Breast Cancer Group (NBCG) developed the Norwegian Breast Cancer Registry (NBCR). The objective of this study is to assess the feasibility of using the NBCR for estimating the EUSOMA QI individually for all hospitals diagnosing and treating breast cancer in Norway. Methods: To provide researchers with high quality cancer data as well as for the purpose of national cancer statistics, the CRN employs a cancer registry system to 1) longitudinal capture data from all patients from all medical entities that diagnose and/or treat cancer patients (e.g., pathology, radiology and clinical departments) in Norway; 2) curate data, i.e. validate the correctness of collected data, and assemble the validated cancer data as cancer cases; 3) provide data for analytics and presentation. Estimates for 10 EUSOMA QI were calculated at national and hospital level. To compare hospitals, a summary score of QIs was defined for each hospital. Results: All hospitals currently treating breast cancer patients have the technical ability to submit data to the NBCR for estimation of QIs defined by EUSOMA. Data from pathology and surgery are of high quality. However, data from oncological and radiological departments are incomplete, but improving. This currently hinders three QIs from being calculated. QI on benign to malign diagnosis needs to be calculated at the individual Breast Centre. Over time the adherence to guidelines have improved and the hospital variation for the respective QI have decreased. Two hospitals met all minimum standard on ten QIs in year 2016 and one hospital did not meet one minimum standard, but met all other targets. Conclusion: The NBCR has since 2012 published annual reports on breast cancer care and for the year 2016 measured 10 of 14 QI defined by EUSOMA. Increased compliance of recommended treatment in Norway has been observed during the years the registry has been active.

Original languageEnglish (US)
Pages (from-to)102-109
Number of pages8
JournalInternational Journal of Medical Informatics
Volume125
DOIs
StatePublished - May 1 2019

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Registries
Breast Neoplasms
Norway
Neoplasms
Compliance
Data Accuracy
Guideline Adherence
Annual Reports
Clinical Pathology
Therapeutics
Radiology
Breast
Research Personnel
Pathology
Survival

Keywords

  • Breast cancer
  • Cancer registry
  • EUSOMA certification
  • Quality indicators

ASJC Scopus subject areas

  • Health Informatics

Cite this

Using clinical cancer registry data for estimation of quality indicators : Results from the Norwegian breast cancer registry. / Hartmann-Johnsen, Olaf Johan; Kåresen, Rolf; Schlichting, Ellen; Naume, Bjorn; Nygård, Jan F.

In: International Journal of Medical Informatics, Vol. 125, 01.05.2019, p. 102-109.

Research output: Contribution to journalArticle

Hartmann-Johnsen, Olaf Johan ; Kåresen, Rolf ; Schlichting, Ellen ; Naume, Bjorn ; Nygård, Jan F. / Using clinical cancer registry data for estimation of quality indicators : Results from the Norwegian breast cancer registry. In: International Journal of Medical Informatics. 2019 ; Vol. 125. pp. 102-109.
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