The Swedish cause of death register

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Abstract

Sweden has a long tradition of recording cause of death data. The Swedish cause of death register is a high quality virtually complete register of all deaths in Sweden since 1952. Although originally created for official statistics, it is a highly important data source for medical research since it can be linked to many other national registers, which contain data on social and health factors in the Swedish population. For the appropriate use of this register, it is fundamental to understand its origins and composition. In this paper we describe the origins and composition of the Swedish cause of death register, set out the key strengths and weaknesses of the register, and present the main causes of death across age groups and over time in Sweden. This paper provides a guide and reference to individuals and organisations interested in data from the Swedish cause of death register.

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Most cited references 13

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Changes in rates of autopsy-detected diagnostic errors over time: a systematic review.

E Burton, Lee Goldman, Kristin K. McDonald … (2003)

Substantial discrepanies exist between clinical diagnoses and findings at autopsy. Autopsy may be used as a tool for quality management to analyze diagnostic discrepanies. To determine the rate at which autopsies detect important, clinically missed diagnoses, and the extent to which this rate has changed over time. A systematic literature search for English-language articles available on MEDLINE from 1966 to April 2002, using the search terms autopsy, postmortem changes, post-mortem, postmortem, necropsy, and posthumous, identified 45 studies reporting 53 distinct autopsy series meeting prospectively defined criteria. Reference lists were reviewed to identify additional studies, and the final bibliography was distributed to experts in the field to identify missing or unpublished studies. Included studies reported clinically missed diagnoses involving a primary cause of death (major errors), with the most serious being those likely to have affected patient outcome (class I errors). Logistic regression was performed using data from 53 distinct autopsy series over a 40-year period and adjusting for the effects of changes in autopsy rates, country, case mix (general autopsies; adult medical; adult intensive care; adult or pediatric surgery; general pediatrics or pediatric inpatients; neonatal or pediatric intensive care; and other autopsy), and important methodological features of the primary studies. Of 53 autopsy series identified, 42 reported major errors and 37 reported class I errors. Twenty-six autopsy series reported both major and class I error rates. The median error rate was 23.5% (range, 4.1%-49.8%) for major errors and 9.0% (range, 0%-20.7%) for class I errors. Analyses of diagnostic error rates adjusting for the effects of case mix, country, and autopsy rate yielded relative decreases per decade of 19.4% (95% confidence interval [CI], 1.8%-33.8%) for major errors and 33.4% (95% [CI], 8.4%-51.6%) for class I errors. Despite these decreases, we estimated that a contemporary US institution (based on autopsy rates ranging from 100% [the extrapolated extreme at which clinical selection is eliminated] to 5% [roughly the national average]), could observe a major error rate from 8.4% to 24.4% and a class I error rate from 4.1% to 6.7%. The possibility that a given autopsy will reveal important unsuspected diagnoses has decreased over time, but remains sufficiently high that encouraging ongoing use of the autopsy appears warranted.

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Unexplained differences between hospital and mortality data indicated mistakes in death certification: an investigation of 1,094 deaths in Sweden during 1995.

Lars Age Johansson, Charlotte Björkenstam, Ragnar Westerling (2009)

Mortality statistics are important for epidemiological research. We examine if discrepancies between death certificate (DC) and hospital discharge condition (HDC) indicate certification errors. From 39,872 hospital deaths in Sweden in 1995, we randomly selected 600 "cases," where DC and HDC were incompatible, and 600 compatible "controls," matched on sex, age, and underlying cause of death. We obtained case summaries for 1,094 (91%) of these. Using a structured protocol, we assessed the accuracy of DCs. Regression analysis indicated diagnostic group and "case" or "control" as the variables that most affected the accuracy. Malignant neoplasm "controls" had the highest accuracy (92%), and benign and unspecified tumor "cases," the lowest (20%). For all diagnostic groups except one, compatible "controls" had better accuracy than incompatible "cases." The exception, chronic obstructive lung disease, had low accuracy for both "cases" (54%) and "controls" (52%). Incompatibility between DC and HDC indicates a greater risk of certification errors. For some diagnostic groups, however, DCs are often inaccurate even when DC and HDC are compatible. By requesting additional information on incompatible cases and all deaths in high-risk diagnostic groups, producers of mortality statistics could improve the accuracy of the statistics.

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Reliability of death certificates in prostate cancer patients.

Johan Rosell, Eberhard Varenhorst, … (2007)

To evaluate the reliability of cause-of-death diagnoses among prostate cancer patients. Information from death certificates obtained from the Swedish Death Register was compared with systematically reviewed medical records from the population-based Swedish Regional Prostate Cancer Register, South-East Region. In total, 5675 patients were included who had been diagnosed with prostate cancer between 1987 and 1999 and who had died before 1 January 2003. The proportion of prostate cancer cases classified as having died from prostate cancer was 3% higher in the official death certificates than in the reviewed records [0.03, 95% confidence interval (CI) 0.02 to 0.04]. Overall agreement between the official cause of death and the reviewed data was 86% (95% CI 85 to 87%). A higher accuracy was observed among men with localized disease (88%, 95% CI 87 to 89%), aged 60 years or younger at death (96%, 95% CI 93 to 100%), or who had undergone curative treatment (91%, 95% CI 88 to 95%). This study indicates a relatively high reliability of official cause-of-death statistics of prostate cancer patients in Sweden. Mortality data obtained from death certificates may be useful in the evaluation of large-scale prostate cancer intervention programmes, especially among younger patients with localized disease.

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Author and article information

Contributors

Hannah Louise Brooke:

ORCID: http://orcid.org/0000-0002-7085-1551

+46 8 524 87 537 , hannah.brooke@ki.se

Journal

Journal ID (nlm-ta): Eur J Epidemiol

Journal ID (iso-abbrev): Eur. J. Epidemiol

Title: European Journal of Epidemiology

Publisher: Springer Netherlands (Dordrecht )

ISSN (Print): 0393-2990

ISSN (Electronic): 1573-7284

Publication date (Electronic): 5 October 2017

Publication date PMC-release: 5 October 2017

Publication date (Print): 2017

Volume: 32

Issue: 9

Pages: 765-773

Affiliations

[1 ]ISNI 0000 0004 1937 0626, GRID grid.4714.6, Unit of Epidemiology, Institute of Environmental Medicine, , Karolinska Institutet, ; PO Box 210, 171 77 Stockholm, Sweden

[2 ]ISNI 0000 0004 0511 9852, GRID grid.416537.2, National Board of Health and Welfare, ; Stockholm, Sweden

[3 ]ISNI 0000 0004 1936 9457, GRID grid.8993.b, Department of Public Health and Caring Sciences, , Uppsala University, ; Uppsala, Sweden

[4 ]ISNI 0000 0004 1937 0626, GRID grid.4714.6, Department of Medical Epidemiology and Biostatistics, , Karolinska Institutet, ; Stockholm, Sweden

[5 ]ISNI 0000 0001 0123 6208, GRID grid.412367.5, Department of Paediatrics, , Örebro University Hospital, ; Örebro, Sweden

[6 ]ISNI 0000 0004 1936 8868, GRID grid.4563.4, Division of Epidemiology and Public Health, School of Medicine, , University of Nottingham, ; Nottingham, UK

[7 ]ISNI 0000000419368729, GRID grid.21729.3f, Department of Medicine, , Columbia University College of Physicians and Surgeons, ; New York, NY USA

[8 ]ISNI 0000 0004 1937 0626, GRID grid.4714.6, Department of Oncology and Pathology, , Karolinska Institutet, ; Stockholm, Sweden

Author information

Hannah Louise Brooke http://orcid.org/0000-0002-7085-1551

Article

Publisher ID: 316

DOI: 10.1007/s10654-017-0316-1

PMC ID: 5662659

PubMed ID: 28983736

SO-VID: a5a16675-f222-494c-8277-b558078ccdf2

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

History

Date received : 22 March 2017

Date accepted : 21 September 2017

Funding

Funded by: FundRef http://dx.doi.org/10.13039/501100006636, Forskningsrådet om Hälsa, Arbetsliv och Välfärd;

Award ID: 2015-01228

Award Recipient : Hannah Louise Brooke

Funded by: FundRef http://dx.doi.org/10.13039/501100004047, Karolinska Institutet;

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ScienceOpen disciplines: Public health

Keywords: cause of death,death certificates,mortality,epidemiology,register,sweden

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ScienceOpen disciplines: Public health

Keywords: cause of death, death certificates, mortality, epidemiology, register, sweden

The Swedish cause of death register

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Most cited references 13

Changes in rates of autopsy-detected diagnostic errors over time: a systematic review.

Unexplained differences between hospital and mortality data indicated mistakes in death certification: an investigation of 1,094 deaths in Sweden during 1995.

Reliability of death certificates in prostate cancer patients.

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