Department of Experimental and Clinical Medicine, Polytechnic University of Marche, Ancona, Italy.
Center of Epidemiology, Biostatistics and Medical Information Technology, Polytechnic University of Marche, Ancona, Italy.
Amyotroph Lateral Scler Frontotemporal Degener. 2024 Aug;25(5-6):554-562. doi: 10.1080/21678421.2024.2336127. Epub 2024 Apr 1.
Amyotrophic Lateral Sclerosis (ALS) is a fatal neurodegenerative disorder with a high multidimensional burden, with an obscure etiopathogenesis.
We designed a longitudinal, population-based study of people residing in Central Italy (Marche Region) who were beneficiaries of the National Health System. People with an unprecedented ALS hospitalization (335.20 ICD-9 CM) or tagged with an ALS exemption between 2014 and 2021 were considered incident cases. ALS cases residing in the region for <3 years or with an active ALS exemption or hospitalized for ALS before 2014 were excluded. We used secondary sources to identify new ALS diagnoses. The regional referral center for ALS's database was used to test the accuracy of secondary sources in detecting cases. ALS mean incidence was compared to that reported in similar studies conducted in Italy. The incidence rate trend adjusted by sex and age was evaluated using the Poisson regression model.
We detected 425 new ALS cases (median age: 70y) in the 2014-2021 period, with a mean incidence of 3.5:100,000 py (95%CI: 3.2-3.8; M:F = 1.2), similar to that reported in similar studies conducted in Italy. No trend was observed during 2014-2019. After including 2020-2021 in the model, we observed a mean decrease in incidence of 5.8% (95% CI 2.0%; 9.5%, p = 0.003).
We show a decrease in the incidence rate of ALS in Marche, during the 2014-2021 period, as a possible outcome of a delayed neurological assessment and diagnosis during the pandemic. An ad hoc developed identification algorithm, based on healthcare utilization databases, is a valuable tool to assess the health impact of global contingencies.
肌萎缩侧索硬化症(ALS)是一种致命的神经退行性疾病,具有较高的多维负担,病因学尚不清楚。
我们设计了一项针对居住在意大利中部(马尔凯地区)的人群的纵向、基于人群的研究,这些人是国家卫生系统的受益者。将 2014 年至 2021 年间首次出现 ALS 住院(335.20 ICD-9 CM)或标记为 ALS 豁免的人群视为首发病例。居住在该地区不到 3 年、有活跃的 ALS 豁免或 2014 年前因 ALS 住院的 ALS 病例被排除在外。我们使用二级来源来识别新的 ALS 诊断。使用 ALS 区域转诊中心的数据库来测试二级来源在检测病例中的准确性。使用泊松回归模型比较 ALS 的平均发病率与在意大利进行的类似研究中的报告发病率。通过性别和年龄调整发病率趋势。
我们在 2014 年至 2021 年期间发现了 425 例新的 ALS 病例(中位年龄:70 岁),发病率为 3.5/100,000 人年(95%CI:3.2-3.8;男:女=1.2),与在意大利进行的类似研究中的报告发病率相似。在 2014-2019 年期间未观察到趋势。在将 2020-2021 年纳入模型后,我们观察到发病率平均下降了 5.8%(95%CI 2.0%;9.5%,p=0.003)。
我们发现,在 2014-2021 年期间,马尔凯的 ALS 发病率下降,这可能是大流行期间神经科评估和诊断延迟的结果。基于医疗保健利用数据库开发的特定识别算法是评估全球突发事件对健康影响的有效工具。