ArticlePublic health reports (Washington, D.C. : 1974)
Do Death Certificates Underestimate the Burden of Rare Diseases? The Example of Systemic Lupus Erythematosus Mortality, Sweden, 2001-2013.
Article in Public health reports (Washington, D.C. : 1974). The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers.
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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Who cites it
18 citing papers in PubMed, 27 citations in OpenAlex.
- Lupus, a Leading Cause of Years of Potential Life Lost in Young Women: Implications for Public Health Priorities and Research Funding.ACR open rheumatology · 2026Article
- National Mortality Databases to Assess Disease Burden in Systemic Autoimmune Diseases: A Valuable Resource But With Limitations.Arthritis & rheumatology (Hoboken, N.J.) · 2026Article
- Accuracy of information on the underlying cause of death: An analysis in Colombia during the COVID-19 pandemic in 2021.PloS one · 2025Article
- Estimating mortality in rare diseases using a population-based registry, 2002 through 2019.Orphanet journal of rare diseases · 2023Article
- Frequency-based rare diagnoses as a novel and accessible approach for studying rare diseases in large datasets: a cross-sectional study.BMC medical research methodology · 2023Article
- Long-term secular trends in dermatomyositis and polymyositis mortality in the USA from 1981 to 2020 according to underlying and multiple cause of death mortality data.Arthritis research & therapy · 2023Article
- Causes of Death Among Individuals With Systemic Lupus Erythematosus by Race and Ethnicity: A Population-Based Study.Arthritis care & research · 2023Article
- Mendelian randomization and pathway analysis demonstrate shared genetic associations between lupus and coronary artery disease.Cell reports. Medicine · 2022Article
- Systemic lupus erythematosus, a leading cause of death in young Mexican females: a nationwide population-based study, 2000-2020.Rheumatology international · 2022Article
- All-cause and cause-specific mortality in systemic lupus erythematosus: a population-based study.Rheumatology (Oxford, England) · 2021Article
- Trends in Systemic Sclerosis Mortality Over Forty-Eight Years, 1968-2015: A US Population-Based Study.Arthritis care & research · 2021Article
- Death rates in the U.S. due to Leukodystrophies with pediatric forms.American journal of medical genetics. Part A · 2021Article
- Geographic disparity in systemic sclerosis mortality in the United States: 1999-2017.Journal of scleroderma and related disorders · 2021Article
- Systemic autoimmune disease as a cause of death: mortality burden and comorbidities.Rheumatology (Oxford, England) · 2021Article
- Risk of first and recurrent serious infection in sarcoidosis: a Swedish register-based cohort study.The European respiratory journal · 2020Article
- Article
- Racial Disparities in Mortality Associated with Systemic Lupus Erythematosus - Fulton and DeKalb Counties, Georgia, 2002-2016.MMWR. Morbidity and mortality weekly report · 2019Article
- Brief Report: Lupus-An Unrecognized Leading Cause of Death in Young Females: A Population-Based Study Using Nationwide Death Certificates, 2000-2015.Arthritis & rheumatology (Hoboken, N.J.) · 2018Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 2 countries.
Funding
Abstract
objectivesMortality due to rare diseases, which are substantial sources of premature mortality, is underreported in mortality studies. The objective of this study was to determine the completeness of reporting systemic lupus erythematosus (SLE) as a cause of death.
methodsIn 2017, we linked data on a Swedish population-based cohort (the Swedish Lupus Linkage, 2001-2013) comprising people with SLE (n = 8560) and their matched general population comparators (n = 37 717) to data from the Cause of Death Register. We reviewed death records of deceased people from the cohort (n = 5110) and extracted data on patient demographic characteristics and causes of death. We estimated odds ratios (ORs) and 95% confidence intervals (CIs) for not reporting SLE as a cause of death by using multivariable-adjusted logistic regression models.
resultsOf 1802 deaths among SLE patients in the study, 1071 (59%) did not have SLE reported on their death records. Most SLE decedents were aged 75-84 at death (n = 584, 32%), female (n = 1462, 81%), and born in Nordic countries (n = 1730, 96%). Decedents aged ≥85 at death were more likely to have SLE not reported on their death records than were decedents aged <50 (OR = 2.34; 95% CI, 1.48-3.68). Having renal failure listed as a cause of death decreased the likelihood of SLE not being reported on the death record (OR = 0.54; 95% CI, 0.40-0.73), whereas having cancer listed as a cause of death increased this likelihood (OR = 2.39; 95% CI, 1.85-3.07).
conclusionsSLE was greatly underreported as a cause of mortality on death records of SLE patients, particularly in older decedents and those with cancer, thereby underestimating the true burden of this disease. Public health resources need to focus on improving the recording of rare diseases in order to enhance the epidemiological utility of mortality data.
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