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Proportion and characteristics of men with unknown risk category in the National Prostate Cancer Register of Sweden
Umeå University Hospital.
Uppsala University Hospital.
Umeå University Hospital; Ryhov Hospital, Jönköping.
Uppsala University Hospital.
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2016 (English)In: Acta Oncologica, ISSN 0284-186X, E-ISSN 1651-226X, Vol. 55, no 12, p. 1461-1466Article in journal (Refereed) Published
Abstract [en]

Introduction: Knowledge on missing data in a clinical cancer register is important to assess the validity of research results. For analysis of prostate cancer (Pca), risk category, a composite variable based on serum levels of prostate specific antigen (PSA), stage, and Gleason score, is crucial for treatment decisions and a strong determinant of outcome. The aim of this study was to assess the proportion and characteristics of men in the National Prostate Cancer Register (NPCR) of Sweden with unknown risk category.

Material and methods: Men diagnosed with prostate cancer between 1998 and 2012 registered in NPCR with known or unknown risk category were compared with respect to age, socioeconomic factors, comorbidity, cancer characteristics, cancer treatment, and mortality from Pca and other causes.

Results: In total, 3 315 out of 129 391 (3%) men had unknown risk category. Compared to other men in NPCR, these men more often had a concomitant bladder cancer diagnosis, 19% vs. 1%, diagnosis of benign prostatic hyperplasia 31% vs. 5%, received unspecified Pca cancer treatment 16% vs. 3%, had higher comorbidity, Charlson Comorbidity Index 2 or higher, 34% vs. 13%, and had lower Pca mortality 12% vs. 30%, but similar mortality from other causes.

Conclusion: Men with unknown risk category were rare in NPCR but distinctly different from other men in many aspects in particular regarding comorbidity and Pca mortality.

Place, publisher, year, edition, pages
Taylor & Francis, 2016. Vol. 55, no 12, p. 1461-1466
Keyword [en]
prostate cancer, clinical cancer register, risk classification, missing data
National Category
Urology and Nephrology Cancer and Oncology
Research subject
Medicine
Identifiers
URN: urn:nbn:se:umu:diva-127328DOI: 10.1080/0284186X.2016.1234716ISI: 000389182700013PubMedID: 27749139OAI: oai:DiVA.org:umu-127328DiVA, id: diva2:1044989
Funder
Swedish Research Council, 2012-5047Swedish Cancer Society, 140570
Available from: 2016-11-07 Created: 2016-11-07 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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