Death Certificates

BackgroundCause of death (COD) information taken from death certificates is often inaccurate and incomplete. However, the accuracy of Underlying CODs (UCODs) recorded on death certificates has not been comprehensively described when multiple diseases are present.MethodsA total of 450 consecutive autopsies performed at a geriatric hospital in Japan between February 2000 and August 2002 were studied. We evaluated the concordance rate, sensitivity, and specificity of major UCODs (cancer, heart disease, and pneumonia) reported on death certificates compared with a reference standard of pathologist assessment based on autopsy data and clinical records. Logistic regression analysis was performed to assess the effect of sex, age, comorbidity, and UCODs on misclassification.ResultsThe concordance rate was relatively high for cancer (81%) but low for heart disease (55%) and pneumonia (9%). The overall concordance rate was 48%. Sex and comorbidity did not affect UCOD misclassification rates, which tended to increase with patient age, although the association with age was also not significant. The strongest factor for misclassification was UCODs (P ConclusionsResearchers should be aware of the accuracy of COD data from death certificates used as research resources, especially for cases of elderly patients with pneumonia.

BackgroundIt has been suggested that cancer registries in England are too dependent on processing of information from death certificates, and consequently that cancer survival statistics reported for England are systematically biased and too low.MethodsWe have linked routine cancer registration records for colorectal, lung, and breast cancer patients with information from the Hospital Episode Statistics (HES) database for the period 2001-2007. Based on record linkage with the HES database, records missing in the cancer register were identified, and dates of diagnosis were revised. The effects of those revisions on the estimated survival time and proportion of patients surviving for 1 year or more were studied. Cases that were absent in the cancer register and present in the HES data with a relevant diagnosis code and a relevant surgery code were used to estimate (a) the completeness of the cancer register. Differences in survival times calculated from the two data sources were used to estimate (b) the possible extent of error in the recorded survival time in the cancer register. Finally, we combined (a) and (b) to estimate (c) the resulting differences in 1-year cumulative survival estimates.ResultsCompleteness of case ascertainment in English cancer registries is high, around 98-99%. Using HES data added 1.9%, 0.4% and 2.0% to the number of colorectal, lung, and breast cancer registrations, respectively. Around 5-6% of rapidly fatal cancer registrations had survival time extended by more than a month, and almost 3% of rapidly fatal breast cancer records were extended by more than a year. The resulting impact on estimates of 1-year survival was small, amounting to 1.0, 0.8, and 0.4 percentage points for colorectal, lung, and breast cancer, respectively.InterpretationEnglish cancer registration data cannot be dismissed as unfit for the purpose of cancer survival analysis. However, investigators should retain a critical attitude to data quality and sources of error in international cancer survival studies.

BackgroundSeveral European countries report differences in risk of maternal mortality between immigrants from low- and middle-income countries and host country women. The present study identified suboptimal factors related to care-seeking, accessibility, and quality of care for maternal deaths that occurred in Sweden from 1988-2010.MethodsA subset of maternal death records (n = 75) among foreign-born women from low- and middle-income countries and Swedish-born women were audited using structured implicit review. One case of foreign-born maternal death was matched with two native born Swedish cases of maternal death. An assessment protocol was developed that applied both the 'migration three delays' framework and a modified version of the Confidential Enquiry from the United Kingdom. The main outcomes were major and minor suboptimal factors associated with maternal death in this high-income, low-maternal mortality context.ResultsMajor and minor suboptimal factors were associated with a majority of maternal deaths and significantly more often to foreign-born women (p = 0.01). The main delays to care-seeking were non-compliance among foreign-born women and communication barriers, such as incongruent language and suboptimal interpreter system or usage. Inadequate care occurred more often among the foreign-born (p = 0.04), whereas delays in consultation/referral and miscommunication between health care providers where equally common between the two groups.ConclusionsSuboptimal care factors, major and minor, were present in more than 2/3 of maternal deaths in this high-income setting. Those related to migration were associated to miscommunication, lack of professional interpreters, and limited knowledge about rare diseases and pregnancy complications. Increased insight into a migration perspective is advocated for maternity clinicians who provide care to foreign-born women.

BackgroundAccurate underlying cause of death (CoD) data is critical for informing public health policy, but inaccurate CoD assignment, here called garbage code (GC) deaths, compromise CoD research and monitoring. Since 1997, GCs have consistently made up over 20% of all underlying CoDs in Sweden, but the distribution of GC deaths by sociodemographic status of the deceased remains poorly understood.MethodsWe used the Swedish Cause of Death Register containing 2.50 million death records from 1997 to 2023. We mapped each record to the Global Burden of Disease (GBD) project cause list and categorized GC deaths by disease groups. We calculated the fraction of deaths that were GCs by individual age, sex, region of death, and highest educational attainment. We performed redistribution of GCs onto well-defined CoDs and assessed the odds of GC assignment with a binomial logistic regression.ResultsSince 1997, Sweden has coded at least 23% of deaths to GCs each year with 25.5% coded to GCs in 2023. The lowest educated consistently received more GC deaths, with 45.8% more GC deaths relative to non-GC deaths between ages 20 and 39 compared to the highest educated, and there were more GC deaths in (1) infections, (2) blood and endocrine diseases, (3) injuries, (4) cancers, and (5) maternal, neonatal, and congenital (MNC) diseases in 2023. GC deaths among the highest educated have continued to increase in infections, injuries, cardiovascular, digestive, and MNC diseases. After redistribution, well-defined death counts among the lowest educated increased by over 20% in 13 of the leading 20 CoDs in Sweden. Our model suggested low education increased the likelihood of having a GC by 12.8% (11.4%-14.2%) compared to the highest educated. This was second to point estimates of standardized age at death (25.2% [24.8%-25.6%]) and exceeded sex (12.1% [11.4%-12.8%] increase for males) and region (at most 7.3% [6.6%-8.1%] decrease for death outside of Stockholm).ConclusionsWe found consistent trends of high GC level in Sweden with doctors assigning more GCs to the lowest educated. Our results reveal stark sociodemographic disparities in CoD coding in Sweden and it is probable that similar disparities would be found elsewhere. This underscores the need for improving procedures and national guidelines in CoD assignment to correctly represent all social groups in research.