Uncertainty and the reporting of intellectual disability on death certificates: a cross-sectional study of US mortality data from 2005 to 2017

OBJECTIVE: To investigate whether uncertainty surrounding the death is associated with the inaccurate reporting of intellectual disability as the underlying cause of death. DESIGN: National Vital Statistics System 2005–2017 US Multiple Cause-of-Death Mortality files. SETTING: USA. PARTICIPANTS: Adults with an intellectual disability reported on their death certificate, aged 18 and over at the time of death. The study population included 26 555 adults who died in their state of residence between 1 January 2005 and 31 December 2017. PRIMARY OUTCOME AND MEASURES: Decedents with intellectual disability reported on their death certificate were identified using the International Statistical Classification of Diseases and Related Health Problems, Tenth Revision code for intellectual disability (F70–79). Bivariate analysis and multilevel logistic regression models were used to investigate whether individual-level and state-level characteristics indicative of increased uncertainty at the time of death were associated with the inaccurate reporting of intellectual disability as the underlying cause of death. RESULTS: Inaccurate reporting of intellectual disability as the underlying cause of death was associated with sociodemographic characteristics, death context characteristics and comorbidities indicative of an increased amount of uncertainty surrounding the death. Most striking were increased odds of having intellectual disability reported as the underlying cause of death for decedents who had a choking event (OR=14.7; 95% CI 12.9 to 16.6, p<0.001), an external cause of death associated with a high degree of uncertainty, reported on their death certificate. CONCLUSION: It is imperative that medical personnel not let increased uncertainty lead to the inaccurate reporting of intellectual disability as the underlying cause of death as this practice obscures cause of death trends for this population. Instead, even in instances when increased uncertainty surrounds the death, certifiers should strive to accurately identify the disease or injury causing death, and report the disability in Part II of the death certificate.