Prevalence of Late-Stage Parkinson's Disease in the US Healthcare System: Insights from TriNetX.

IF 7.4 1区医学 Q1 CLINICAL NEUROLOGY Movement Disorders Pub Date : 2024-07-04 DOI:10.1002/mds.29900

Sol De Jesus, Annika Daya, Liba Blumberger, Mechelle M Lewis, Doug Leslie, Samer D Tabbal, Rachel Dokholyan, Amanda M Snyder, Richard B Mailman, Xuemei Huang

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Abstract

Background: Patients in late-stage Parkinson's disease (PD_LS) are caregiver-dependent, have low quality of life, and higher healthcare costs.

Objective: To estimate the prevalence of PD_LS patients in the current US healthcare system.

Methods: We downloaded the 2010-2022 data from the TriNetX Diamond claims network that consists of 92 US healthcare sites. PD was identified using standard diagnosis codes, and PD_LS was identified by the usage of wheelchair dependence, personal care assistance, and/or presence of diagnoses of dementia. Age of PD_LS identification and survival information were obtained and stratified by demographic and the disability subgroups.

Results: We identified 1,031,377 PD patients in the TriNetX database. Of these, 18.8% fitted our definition of PD_LS (n = 194,297), and 10.2% met two or more late-stage criteria. Among all PD_LS, the mean age of PD_LS identification was 78.1 (±7.7) years, and 49% were already reported as deceased. PD_LS patients were predominantly male (58.5%) with similar distribution across PD_LS subgroups. The majority did not have race (71%) or ethnicity (69%) information, but for the available information >90% (n = 53,162) were White, 8.2% (n = 5121) Hispanic/Latino, 7.8% (n = 4557) Black, and <0.01% (n = 408) Asian. Of the PD_LS cohort, 71.6% identified with dementia, 12.9% had personal care assistance, and 4.8% were wheelchair-bound.

Conclusions: Late-stage patients are a significant part of the PD landscape in the current US healthcare system, and largely missed by traditional motor-based disability staging. It is imperative to include this population as a clinical, social, and research priority. © 2024 The Author(s). Movement Disorders published by Wiley Periodicals LLC on behalf of International Parkinson and Movement Disorder Society.

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美国医疗系统中晚期帕金森病的患病率：来自 TriNetX 的见解。

背景：帕金森病晚期（PDLS）患者依赖护理人员，生活质量低，医疗费用高：目的：估算当前美国医疗系统中帕金森病晚期患者的患病率：我们从 TriNetX Diamond 索赔网络下载了 2010-2022 年的数据，该网络由 92 个美国医疗保健网站组成。我们使用标准诊断代码识别了帕金森病，并通过使用轮椅依赖、个人护理协助和/或存在痴呆诊断来识别 PDLS。我们获得了 PDLS 识别年龄和生存信息，并按人口统计学和残疾亚组进行了分层：我们在 TriNetX 数据库中确认了 1,031,377 名帕金森病患者。其中，18.8%符合我们对PDLS的定义（n = 194,297），10.2%符合两个或两个以上晚期标准。在所有 PDLS 患者中，识别 PDLS 的平均年龄为 78.1 (±7.7) 岁，49% 的患者已死亡。PDLS 患者以男性为主（58.5%），在 PDLS 亚群中的分布情况相似。大多数患者没有种族（71%）或民族（69%）信息，但就现有信息而言，超过 90% 的患者（n = 53,162 人）为白人，8.2% 的患者（n = 5121 人）为西班牙裔/拉丁裔，7.8% 的患者（n = 4557 人）为黑人，在 LS 群组中，71.6% 的患者确定患有痴呆症，12.9% 的患者需要个人护理协助，4.8% 的患者需要坐轮椅：在当前的美国医疗保健系统中，晚期患者是帕金森病的重要组成部分，而传统的以运动为基础的残疾分期在很大程度上忽略了这一群体。当务之急是将这部分人群作为临床、社会和研究的重点。©2024年作者。运动障碍》由 Wiley Periodicals LLC 代表国际帕金森和运动障碍协会出版。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Movement Disorders 医学-临床神经学

CiteScore

13.30

自引率

8.10%

发文量

371

审稿时长

12 months

期刊介绍： Movement Disorders publishes a variety of content types including Reviews, Viewpoints, Full Length Articles, Historical Reports, Brief Reports, and Letters. The journal considers original manuscripts on topics related to the diagnosis, therapeutics, pharmacology, biochemistry, physiology, etiology, genetics, and epidemiology of movement disorders. Appropriate topics include Parkinsonism, Chorea, Tremors, Dystonia, Myoclonus, Tics, Tardive Dyskinesia, Spasticity, and Ataxia.