Erroneous Coding of Developmental Disabilities as Underlying Cause of Death

项目总结 在美国，患有发育障碍的成年人死亡的年龄大约比同龄人年轻20岁。 人口。怀茨说，这一显著的死亡率劣势大于男性和女性之间的死亡率差距 黑人，以及收入最高和最低四分位数的成年人。造成这种差距的原因很少。 尽管对这个主题进行了数十年的研究，但人们还是理解了这一点。然而，新的研究表明，一种猖獗的 错误地对成人发育障碍死亡证明进行编码会导致广泛的 对其根本死因的错误分类。此外，这些错误代码的隐蔽性令人担忧 因窒息和阿尔茨海默病及相关痴呆而导致的高死亡率。在揭开 掩盖错误编码的影响是研究中的一个关键进步，正在努力消除这一点 被误导的做法需要关于决定错误编码的多层次因素的经验证据。这个 拟议的项目将系统地评估错误编码是否不成比例地发生在(1) 死者的某些社会人口亚群；(2)当存在某些共病或伤害时 在死亡时，以及(3)在美国某些州的情况下。通过确定哪些子组最多 错误分类的风险，结果将通知防止错误分类的策略，从而确定健壮性 对这些成年人中特定原因死亡率的估计。这项研究的中心假设是错误的代码 更常见的是来自边缘化社会群体的死者，在真正原因 死亡是高度可预防的(例如，窒息)，在财政和法律政策较少的美国各州 顺应发育残疾人士的需要。使用国家生命统计数据 系统2012-2016美国多个死因死亡档案与州一级财务信息合并 对发育残疾服务的承诺和管理死亡证明的法律，这 该项目将解决三个具体目标：(1)审查死者的社会人口学程度 特征预测了将发育障碍错误编码为潜在疾病的可能性 死亡原因；(2)评估死亡时是否存在并存的疾病和伤害， 以窒息事件为重点，预测发育障碍错误的可能性 被编码为潜在死亡原因；以及(3)确定对发育障碍的资助是否存在差异 各州之间的服务，以及关于谁可以证明死亡证明的州法律中，预测是否 发育障碍被错误地编码为潜在的死亡原因。结果将提供一个多层次的 了解个人层面的社会人口学特征、个人层面的并存疾病和 伤害和州一级的政策决定了发育障碍成年人的错误编码。 根据这些结果，该项目将提出防止错误分类的战略。的长期目标是 这个项目是为了更好地了解和减少这一历史上处于不利地位的人口的死亡率。

PROJECT SUMMARY Adults with developmental disabilities die at ages approximately 20 years younger than peers in the general U.S. population. This striking mortality disadvantage is larger than the mortality gap between men and women, Whites and Blacks, and adults in the top and bottom income quartiles. The reasons for the disparity are poorly understood despite decades of research on the topic. However, new research shows that a rampant practice of erroneously coding death certificates for adults with developmental disability results in widespread misclassification of their underlying causes of death. Furthermore, these erroneous codes obscure alarmingly high rates of death due to choking and Alzheimer’s disease and related dementias. While uncovering the obscuring effect of erroneous coding was a crucial advance in research, ongoing efforts to eliminate this misguided practice require empirical evidence on the multilevel factors that determine erroneous coding. The proposed project will systematically assess whether erroneous coding disproportionately occurs (1) among certain sociodemographic subgroups of decedents, (2) when certain comorbid diseases or injuries are present at the time of death, and (3) across certain U.S. state contexts. By identifying which subgroups are at greatest risk of misclassification, results will inform strategies to prevent misclassification and, thereby, determine robust estimates of cause-specific mortality among these adults. The study’s central hypothesis is that erroneous codes are more commonly found among decedents from marginalized social groups, in situations when the true cause of death was highly preventable (e.g., choking), and within U.S. states where fiscal and legal policies are less amenable to the needs of individuals with developmental disability. Using data from the National Vital Statistics System 2012–2016 U.S. Multiple Cause-of-Death Mortality files merged with state-level information on financial commitments to developmental disability services and laws governing the certification of death certificates, this project will address three Specific Aims: (1) Examine the extent to which decedents’ sociodemographic characteristics predict the likelihood of having developmental disability erroneously coded as the underlying cause of death; (2) Assess whether the presence of comorbid diseases and injuries present at the time of death, with an emphasis on choking incidents, predicts the likelihood that a developmental disability is erroneously coded as underlying cause of death; and (3) Determine whether variation in funding for developmental disability services among states, and in state laws regarding who can certify a death certificate, predict whether developmental disability is erroneously coded as underlying cause of death. Results will provide a multilevel understanding of how individual-level sociodemographic characteristics, individual-level comorbid diseases and injuries, and state-level policies determine erroneous coding among adults with developmental disabilities. Based on these results, the project will present strategies for preventing misclassification. The long-term goal of this project is to better understand and reduce mortality among this historically disadvantaged population.