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Capture rate and representativity of 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. Department of Urology, Jönköping Hospital, Jönköping, Sweden.
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2015 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 54, no 2, p. 158-163Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: Capture rate and representativity of quality registers need to be assessed in order to ensure that register data are generalizable. MATERIAL AND METHODS: In 1998-2009, 103 047 men had been diagnosed with prostate cancer and registered in the Swedish Cancer Register to which registration is mandated by law and of these men, 100 849 men (98%) had also been registered in The National Prostate Cancer Register (NPCR) of Sweden. We compared demographics, cancer treatment, comorbidity, and mortality in men in NPCR, with those who had only been registered in the Cancer Register, by use of data from the Cause of Death Register, the In-Patient Register and the Prescribed Drug Register. In addition, we identified 1929 men who had prostate cancer as underlying cause of death in the Cause of Death Register who had neither been registered in the Cancer Register nor in NPCR. RESULTS: Compared to men in NPCR, men only registered in the Cancer Register were slightly older, median age 72 versus 71 years, and a lower proportion underwent radical prostatectomy, 15% versus 27%. Ten year prostate cancer mortality was 23% (95% CI 20-25) for men in the Cancer Register only and 24% (95% CI 24-25) in NPCR, while mortality from competing causes was 28% (95% CI 26-31) and 30% (95% CI 30-30), respectively. Men identified with prostate cancer by a death certificate were old and had high comorbidity. CONCLUSION: The capture rate of NPCR is very high and there are only modest differences in demographics, cancer treatment, comorbidity, and mortality between the small proportion of men only registered in the Cancer Register and men registered in NPCR, indicating that information in NPCR can be generalized to all men with prostate cancer in Sweden.

Place, publisher, year, edition, pages
Informa Healthcare, 2015. Vol. 54, no 2, p. 158-163
Keyword [en]
prostatic neoplasm, quality register, Cancer Register, Cause of Death Register
National Category
Cancer and Oncology
Identifiers
URN: urn:nbn:se:umu:diva-94131DOI: 10.3109/0284186X.2014.939299ISI: 000348301400003PubMedID: 25034349OAI: oai:DiVA.org:umu-94131DiVA, id: diva2:752579
Available from: 2014-10-05 Created: 2014-10-05 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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