Postmortem Diagnostic Overshadowing: Reporting Cerebral Palsy on Death Certificates.

Postmortem diagnostic overshadowing-defined as inaccurately reporting a disability as the underlying cause of death-occurs for over half of adults with cerebral palsy. This practice obscures cause of death trends, reducing the effectiveness of efforts to reduce premature mortality among this marginalized health population. Using data from the National Vital Statistics System 2005 to 2017 U.S. Multiple Cause of Death files (N = 29,996), we identify factors (sociodemographic characteristics, aspects of the context and processing of death, and comorbidities) associated with the inaccurate reporting of cerebral palsy as the underlying cause of death. Results suggest that inaccurate reporting is associated with heightened contexts of clinical uncertainty, the false equivalence of disability and health, and potential racial-ethnic bias. Ending postmortem diagnostic overshadowing will require training on disability and health for those certifying death certificates and efforts to redress ableist death certification policies.

Cause of death trends among adults with and without cerebral palsy in the United States, 2013-2017.

BACKGROUND: Adults with cerebral palsy (CP) in the United States die much earlier than those without CP, a health inequality likely shaped by causes of death. Existing research has not considered demographic differences in mortality patterns. OBJECTIVES: To analyze differences in cause of death for adults who did/did not have CP reported on their death certificates and to assess sex and racial-ethnic difference in causes of death among adult decedents with CP. METHODS: Data are from the 2013-2017 US Multiple Cause of Death Mortality files (N = 13,332,871; n = 13,897 with CP). Multiple logistic regression models were used to compare differences in causes of death between adults with and without CP and to determine sex and racial-ethnic differences in causes of death among adults with CP. Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were estimated. RESULTS: As compared with decedents without CP, those with CP were more likely to die from pneumonitis (aOR 31.14, 95% CI 29.42-32.96), influenza/pneumonia (8.78, 8.30-9.29), respiratory failure (17.24, 15.19-18.69), and choking (20.66, 18.86-22.62) and less likely to die from heart disease (0.61, 0.58-0.65), cancer (0.12, 0.11-0.13), chronic lower respiratory diseases (0.50, 0.44-0.56), and cerebrovascular diseases (0.66, 0.59-0.75). Among adults with CP, female decedents were more likely than males to die from respiratory failure (1.21, 1.03-1.42), and non-Hispanic Black decedents were more likely than non-Hispanic White decedents to die from heart disease (1.24, 1.07-1.45) and cerebrovascular disease (1.77, 1.29-2.49). CONCLUSIONS: In 2013-2017, heart disease was the leading cause of death for adults with and without CP. However, for people with compared to those without CP, likelihood of death from likely preventable respiratory causes of death was higher. Non-Hispanic Black adults were more likely than non-Hispanic White adults to die from heart and cerebrovascular diseases. Public health, clinical, and rehabilitation efforts must use a multifaceted approach to address respiratory and circulatory health among people with CP. DATABASE: United States National Vital Statistics System of the Centers for Disease Control and Prevention Multiple Cause of Death Mortality files (National Bureau of Economic Research: https://www.nber.org/research/data/vital-statistics-mortality-data-nber).

Assessing state level variation in signature authority and cause of death accuracy, 2005-2017.

This study utilized a convergent mixed-methods design to examine whether variation in death certificate certifier type predicts the accuracy of cause of death reporting in the US. We analyzed the content of state statutes, amendments, and policies concerning cause of death signature authority in 2005-2017 to create the Cause of Death Signature Authority (CoDSA) database. After merging the CoDSA data with 2005-2017 National Vital Statistics System Multiple Cause of Death Mortality files for adults with cerebral palsy (CP) (N = 29,996), we employed logistic regression models to determine the likelihood that different certifier groups made one particular type of death certification error - inaccurately reporting CP as the underlying cause of death (UCOD). The content analysis provided evidence of significant liberalization of cause of death signature authority, with 23 states expanding signature authority to include physician extenders. Logistic regression analysis revealed differences in UCOD accuracy based on certifier type. Compared to medical examiners, the likelihood of CP being reported as the UCOD, was: 41% higher (CI 1.12, 1.78) for coroners; 25% higher (1.05, 1.49) for mixed-system death investigators; 24% higher (1.08, 1.42) for physicians; and 16% higher (1.00, 1.34) for physician extenders. Inaccuracies limit public health efforts aimed at improving the health and longevity for disadvantaged populations, such as people with CP. Poor performance among cause of death certifiers may indicate systemic problems with death certification that should be addressed with more robust training for all professional groups with signature authority.

Cause of death in adults with Down syndrome in the United States.

BACKGROUND: Prior studies report anomalous cause of death patterns for adults with Down syndrome, but do not provide comparison of age trends for specific causes of death between adults with and without Down syndrome, or explore biological sex and racial-ethnic differences in causes of death among adults with Down syndrome. OBJECTIVE: To better understand cause of death trends for adults, age 18 and over, with Down syndrome. METHODS: Cross-sectional data were from the 2013-2017 US Multiple Cause of Death Mortality files. Adjusted odds ratios were utilized to compare cause of death trends overall, and by age, between adults with (N = 9870) and without (N = 13,323,001) Down syndrome. We also analyzed biological sex and race-ethnic differences in cause of death solely among adults with Down syndrome. RESULTS: Although heart disease, dementia and Alzheimer's disease, and cancer were common among adults all adults, death from these diseases was more prominent at younger ages for adults with Down syndrome. Adults with Down syndrome were also more likely to die from influenza and pneumonia, pneumonitis, respiratory failure, and choking at all ages. Distinct biological sex and racial-ethnic differences were present in causes of death among adults with Down syndrome. CONCLUSIONS: While efforts to reduce premature mortality for adults with Down syndrome should attend to common risk factors such as heart disease, dementia and Alzheimer's disease, and cancer, it is imperative to afford increased attention to earlier onset of these diseases, as well as increased risk of death from respiratory and swallowing/choking related disorders at all ages.

COVID-19 outcomes among people with intellectual and developmental disability living in residential group homes in New York State.

BACKGROUND: People with intellectual and developmental disabilities (IDD) may be at higher risk of severe outcomes from COVID-19. OBJECTIVE: To describe COVID-19 outcomes among people with IDD living in residential groups homes in the state of New York and the general population of New York State. METHODS: Data for people with IDD are from a coalition of organizations providing over half of the residential services for the state of New York, and from the New York State Department of Health. Analysis describes COVID-19 case rates, case-fatality, and mortality among people with IDD living in residential group homes and New York State through May 28, 2020. RESULTS: People with IDD living in residential group homes were at greater risk of severe COVID-19 outcomes: case rates - 7,841 per 100,000 for people with IDD compared to 1,910 for New York State; case-fatality - 15.0% for people with IDD compared to 7.9% for New York State; and mortality rate - 1,175 per 100,000 for people with IDD compared to 151 per 100,000 for New York State. Differences in cases and mortality rate were confirmed across regions of the state, but case-fatality rate was only higher for people with IDD in and around the New York City region. CONCLUSIONS: COVID-19 appears to present a greater risk to people with IDD, especially those living in congregate settings. A full understanding of the severity of this risk will not be possible until US states begin publicly sharing all relevant data they have on COVID-19 outcomes among this population.