Accuracy of death certificate diagnosis of amyotrophic lateral sclerosis.

Objective: To evaluate the accuracy of death certificates (DCs) for amyotrophic lateral sclerosis (ALS) in different parts of Italy. Studies based on DC diagnosis for ALS have shown a reduced mortality comparing northern with southern Italy. These data are in contrast with results from other surveys on the incidence of ALS performed in Italy and other countries. Methods: Archives of neurological clinics from northern (Milano, Monza, Pavia, and Bologna) and southern Italy including islands (Napoli, Sassari, Palermo, and Messina) were searched for patients discharged with a diagnosis of ALS in the period 1970–1995. Subjects affected by definite/probable ALS according to the Scottish Motor Neuron Disease Research Group diagnostic criteria were included. DCs were obtained from the vital statistic bureau. True positive rates (TPRs) and 95% confidence intervals (CIs) for proportions were calculated for northern and southern Italy separately. Multiple logistic regression analysis was performed according to gender, age at onset, age and year of death, and interval between onset and death. Results: We found 651 patients affected by definite/probable ALS; 573 of them had died by December 31, 1996. DCs were available for 566 subjects (411 from northern Italy and 155 from southern Italy). TPR was 66.7% (95% CI 61.9–71.2) for northern Italy and 51.6% (95% CI 43.5–59.7) for southern Italy (χ² = 10.9, p = 0.001). Logistic regression analysis showed an association between a lower accuracy of DCs and the interval between onset of symptoms and death. TPR calculations considering different death periods (1970–1982 and 1983–1996) showed comparable rates of accuracy over time. Conclusions: Mortality statistics based on official death records do not accurately reflect interregional mortality for ALS in Italy.

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“…TPR for the total study sample was even lower than that of other studies done in Italy [5] and other countries [2,3,6,10,13].…”

Section: Discussioncontrasting

confidence: 39%

“…The relative stability of TPRs over time has already been reported [5,7,14], which indicates that improvement of the diagnostic procedures is not accompanied by an improved accuracy of the DCs.…”

Section: Discussionmentioning

confidence: 87%

Accuracy of Death Certificates for Amyotrophic Lateral Sclerosis Varies Significantly from North to South of Italy: Implications for Mortality Studies

et al. 2004

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“…It may be argued that a surreptitious or artifactual increase in the ALS death rate for the 20-to 49-year-old age group is unlikely. Although misclassifi cation of diagnoses of ALS on death records is possible, this would be expected to have little effect on age-specifi c death rates since both false-positive and false-negative classifi cation tends to occur in an offsetting manner [37,38] . In addition, underreporting of ALS in death records is less likely to occur in younger age groups, in which the diagnosis may be less obscured by intercurrent disease, than in older age groups, in which the diagnosis may be less clear [38] .…”

Section: Discussionmentioning

confidence: 99%

Amyotrophic Lateral Sclerosis Mortality in the United States, 1979–2001

Sejvar

Holman²,

Bresee³

et al. 2005

Neuroepidemiology

100

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The etiology of nonfamilial amyotrophic lateral sclerosis (ALS) remains unknown. Earlier studies have suggested an increase in the incidence of ALS over time. We performed a retrospective analysis of ALS-associated death rates and trends in the United States for 1979–2001 using death records from the national multiple cause-of-death database. The US average annual age-adjusted ALS death rate was 1.84 per 100,000 persons for 1979 through 1998. Most deaths were among adults ≧65 years of age and the median age at death was 67 years. A small overall increase in the death rate was observed primarily between 1979 and 1983, with a subsequent plateau. This slight change in the overall rate reflected apparent increases in the rates among those persons ≧65 years of age, particularly women, and persons in the 20- to 49-year-old age group. The ALS-associated death rate appeared to differ by geographic area, with a higher occurrence among most northern states. Our findings suggest that the epidemiology of ALS-associated deaths in the United States demonstrated small increases in the overall age-adjusted death rate and in the death rates among elderly women and adults 20–49 years of age. Subpopulations at higher risk for ALS were males, whites, persons ≧65 years of age, and residents of northern states. This study provides information for further studies to examine the epidemiology and risk factors associated with ALS.

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“…Its most notable limitation is its reliance on death certifi cates for the cause of death in a context where the earlier cancer is a potentially competing cause of death. Although death certifi cates are less reliable than other medical records and may vary by geographic area [23], several studies, although not all [24], have determined that death certificates are reasonably accurate at identifying MND or ALS in a number of industrialized countries [25,26]. In any case, comparison rates are derived from death certifi cates as well.…”

Section: Discussionmentioning

confidence: 99%

Amyotrophic Lateral Sclerosis Mortality in 1.9 Million US Cancer Survivors

et al. 2005

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Background: Large cancer registries offer the opportunity to explore and generate hypotheses about the pathogenesis of cancer and other diseases, including neurodegenerative diseases such as amyotrophic lateral sclerosis (ALS). Methods: Using data from nine population-based cancer registries of the Surveillance, Epidemiology, and End Results (SEER) Program of the US National Cancer Institute (NCI) and death certificates, we followed 1.9 million cancer survivors who were diagnosed between 1973 and 2000 and who survived at least 1 year, through the year 2000. The outcome of interest was the standardized mortality ratio (SMR) of observed to expected ALS deaths among cancer survivors. To assess the validity of the study design, we also examined associations with Parkinson’s disease mortality, which we expected to be inversely associated with smoking-related cancers. Results: There was no significantly increased risk or deficit of ALS mortality for all cancer sites combined (SMR = 1.0). Parkinson’s disease mortality was, as expected, significantly and inversely associated with smoking-related cancers. Both ALS and Parkinson’s disease mortality were significantly elevated following melanoma (SMR = 1.6; 95% CI = 1.1–2.2; SMR = 1.5; 1.2–1.8, respectively). Contrary to previous hypotheses, ALS was unrelated to lymphomas or lymphoproliferative malignancies and was not associated with smoking-related cancers. Conclusions: In this exploratory study, we observed a modest, significant association between melanoma and both ALS and Parkinson’s disease mortality. It would be useful to explore these findings in other large national databases that are able to link cancer and ALS and Parkinson’s disease.

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Accuracy of death certificate diagnosis of amyotrophic lateral sclerosis.

Abstract: Study objective-The aim was to determine the reliability of

Cited by 62 publications

References 10 publications

Accuracy of Death Certificates for Amyotrophic Lateral Sclerosis Varies Significantly from North to South of Italy: Implications for Mortality Studies

Accuracy of Death Certificates for Amyotrophic Lateral Sclerosis Varies Significantly from North to South of Italy: Implications for Mortality Studies

Amyotrophic Lateral Sclerosis Mortality in the United States, 1979–2001

Amyotrophic Lateral Sclerosis Mortality in 1.9 Million US Cancer Survivors

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