S D Landes1, M A Turk2, J M Finan1. 1. Department of Sociology and Aging Studies Institute, Maxwell School of Citizenship and Public Affairs, Syracuse University, Syracuse, NY, USA. 2. Department of Physical Medicine and Rehabilitation, SUNY Upstate Medical University, Syracuse, NY, USA.
Abstract
BACKGROUND: Efforts aimed at preventing premature mortality for people with Down syndrome are hindered by the practice of reporting disability as the underlying cause of death. Prior research suggests this form of diagnostic overshadowing may be the result of increased uncertainty surrounding the death. METHODS: This study uses bivariable analysis and multivariable logistic regression models to investigate associations between sociodemographic characteristics, comorbidities, and death context and processing characteristics with the reporting of Down syndrome as the underlying cause of death in 2005-2017 US Multiple Cause of Death data files. RESULTS: The reporting of Down syndrome as the underlying cause of death was associated with characteristics indicative of an increased amount of uncertainty surrounding the death. Results also suggest other mechanisms may inform inaccurate reporting, such as racial bias, and the continued conflation of disability and health. CONCLUSIONS: Medical personnel certifying death certificates should strive for accuracy when reporting the causes of death. To ensure this outcome, even in the midst of increased uncertainty, Down syndrome should not be reported as the underlying cause of death unless the decedent was diagnosed with Alzheimer's disease or unspecified dementia. Future research should further explore the possibility that increased death certification errors for adults with Down syndrome, or other developmental disabilities, are associated with racial bias.
BACKGROUND: Efforts aimed at preventing premature mortality for people with Down syndrome are hindered by the practice of reporting disability as the underlying cause of death. Prior research suggests this form of diagnostic overshadowing may be the result of increased uncertainty surrounding the death. METHODS: This study uses bivariable analysis and multivariable logistic regression models to investigate associations between sociodemographic characteristics, comorbidities, and death context and processing characteristics with the reporting of Down syndrome as the underlying cause of death in 2005-2017 US Multiple Cause of Death data files. RESULTS: The reporting of Down syndrome as the underlying cause of death was associated with characteristics indicative of an increased amount of uncertainty surrounding the death. Results also suggest other mechanisms may inform inaccurate reporting, such as racial bias, and the continued conflation of disability and health. CONCLUSIONS: Medical personnel certifying death certificates should strive for accuracy when reporting the causes of death. To ensure this outcome, even in the midst of increased uncertainty, Down syndrome should not be reported as the underlying cause of death unless the decedent was diagnosed with Alzheimer's disease or unspecified dementia. Future research should further explore the possibility that increased death certification errors for adults with Down syndrome, or other developmental disabilities, are associated with racial bias.
Authors: G M Barlow; X N Chen; Z Y Shi; G E Lyons; D M Kurnit; L Celle; N B Spinner; E Zackai; M J Pettenati; A J Van Riper; M J Vekemans; C H Mjaatvedt; J R Korenberg Journal: Genet Med Date: 2001 Mar-Apr Impact factor: 8.822
Authors: Heather M Snyder; Lisa J Bain; Adam M Brickman; Maria C Carrillo; Anna J Esbensen; Joaquin M Espinosa; Fabian Fernandez; Juan Fortea; Sigan L Hartley; Elizabeth Head; James Hendrix; Priya S Kishnani; Florence Lai; Patrick Lao; Cynthia Lemere; William Mobley; Elliott J Mufson; Huntington Potter; Shahid H Zaman; Ann-Charlotte Granholm; H Diana Rosas; Andre Strydom; Michelle Sie Whitten; Michael S Rafii Journal: Alzheimers Dement Date: 2020-06-16 Impact factor: 16.655