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Evaluation of data quality in the National Prostate Cancer Register of Sweden
Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Urology and Andrology.
Umeå University, Faculty of Medicine, Department of Surgical and Perioperative Sciences, Urology and Andrology.
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2015 (English)In: European Journal of Cancer, ISSN 0959-8049, E-ISSN 1879-0852, Vol. 51, no 1, p. 101-111Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Data in cancer quality registers are increasingly used for quality assurance, benchmarking, and research. 

MATERIALS AND METHODS: Data in the National Prostate Cancer Register (NPCR) of Sweden were evaluated for completeness, timeliness, comparability and validity. Completeness and timeliness were assessed by cross-linkage to the Swedish Cancer Register, comparability was examined by comparing registration routines in NPCR with national and international guidelines, and validity was assessed by re-abstraction of data from medical charts for 731 men diagnosed with prostate cancer (Pca) in 2009. Furthermore, data on treatment were validated by record linkage to the Swedish Patient Register and The Prescribed Drug Register. 

RESULTS: NPCR captured 98% of Pca cases in the Cancer Register and the mean value for completeness of the 48 evaluated variables was 90% (range 64-100%). Timeliness increased substantially from 2008 to 2012 with 95% of cases reported within 12months after diagnosis in 2012. NPCR complied with national and international coding routines. Overall, the agreement between original data and re-abstracted data from 731 charts was high. For example, the correlation between original and re-abstracted data was 1.00 for date of surgery, and 0.97 for serum levels of prostate specific antigen and exact agreement was 97% for Gleason score at biopsy, 83% for clinical local T stage and more than 95% of the androgen deprivation therapies registered in NPCR had a corresponding filled prescription. 

CONCLUSION: Record linkages with other data sources and re-abstraction of data showed that data quality in NPCR is high.

Place, publisher, year, edition, pages
2015. Vol. 51, no 1, p. 101-111
Keyword [en]
Prostate cancer, Cancer quality register, Evaluation, Validity
National Category
Clinical Medicine
Identifiers
URN: urn:nbn:se:umu:diva-97301DOI: 10.1016/j.ejca.2014.10.025ISI: 000346740300012PubMedID: 25465187OAI: oai:DiVA.org:umu-97301DiVA, id: diva2:771449
Available from: 2014-12-13 Created: 2014-12-13 Last updated: 2018-02-06Bibliographically approved
In thesis
1. Data quality in the National Prostate Cancer Register (NPCR) of Sweden
Open this publication in new window or tab >>Data quality in the National Prostate Cancer Register (NPCR) of Sweden
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: Data in quality registers are increasingly used for quality assurance of health care, benchmarking, and research. If valid conclusions are to be drawn from such studies, it is vital that register data have high quality. The aim of this thesis was to assess data quality in the National Prostate Cancer Register (NPCR) of Sweden, a nationwide register that since 1998 captures 98% of all cases of Prostate cancer (Pca) in Sweden. The proportion and characteristics of Pca cases not registered in NPCR was investigated in paper I. Four dimensions of data quality were evaluated for NPCR in paper II: completeness, timeliness, comparability, and validity. Proportion and characteristics of Pca cases registered in NPCR but with unknown risk category were investigated in paper III. Finally, the association between Socioeconomic Status (SES) and Pca diagnosis, treatment, and mortality was studied in paper IV. 

Material and methods: Data quality of NPCR was studied by cross-linkages between NPCR and other health care registers and demographical databases by use of the Swedish personal identity number. Validity was further studied by re-abstraction of patient health care records, followed by comparison of re-abstracted and original register data.

Results: Men not registered in NPCR, who constituted around 2% of all cases in the Swedish Cancer Register, differed only modestly in characteristics from cases in NPCR, indicating that NPCR is generalizable for all men with Pca in Sweden. Data quality in NPCR was high overall, with high completeness compared to the Swedish Cancer Register with registration mandated by law and few Pca cases were detected by use of death certificates. There was timely registration, and good comparability with registration forms and coding routines that were compliant with international guidelines. Data validity was high with high agreement and correlation for key variables. Men with unknown risk category had, compared to men with known risk category, more often concomitant bladder cancer, higher comorbidity, and lower Pca mortality. Men with high SES had, compared to men with low SES, higher probability of Pca detected during health checkup, shorter waiting times for prostatectomy, and higher probability of curative treatment for intermediate and high-risk cancer. Pca mortality was lower in men with high SES than in men with low SES for high-risk cancer.

Conclusion: These results indicate that data quality in NPCR is high and that NPCR is population-based. There were consistent differences in diagnostic and therapeutic activity according to SES despite an equal access tax-financed healthcare system in Sweden. 

Place, publisher, year, edition, pages
Umeå: Umeå University, 2018. p. 44
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1945
Keyword
Prostate cancer, Cancer quality register, Data quality, Evaluation, Validity
National Category
Urology and Nephrology
Identifiers
urn:nbn:se:umu:diva-144553 (URN)978-91-7601-831-6 (ISBN)
Public defence
2018-03-02, E04, Farmakologihuset, Norrlands Universitetssjukhus, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Funder
Swedish Research Council, 2012-5047Swedish Cancer Society, 2016-0700
Available from: 2018-02-09 Created: 2018-02-06 Last updated: 2018-03-02Bibliographically approved

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