Incidence and prevalence of Amyotrophic Lateral Sclerosis in three Italian Regions: a study based on health administrative databases.

IF 1.2 4区医学 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Epidemiologia & Prevenzione Pub Date : 2024-05-01 DOI:10.19191/EP24.3.A710.055

Ilaria Bacigalupo, Marco Finocchietti, Olga Paoletti, Anna Maria Bargagli, Paola Brunori, Niccolò Lombardi, Francesco Sciancalepore, Nera Agabiti, Ursula Kirchmayer

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引用次数: 0

Abstract

Objectives: to estimate Amyotrophic Lateral Sclerosis (ALS) incidence and prevalence in three Italian Regions (Lazio, Tuscany, and Umbria), using health administrative databases.

Design: retrospective population-based study.

Setting and participants: ALS patients residing in Lazio, Umbria, and Tuscany were identified through an algorithm based on three different administrative databases: hospital discharge records, exemptions from health care co-payment, and emergency departments (study period 2014-2019). Crude, age- and gender-specific prevalence were calculated on 31.12.2019 and incidence rates of ALS were standardised by region, year, and gender between 2014-2019. Using a clinical dataset available in the Lazio Region, the proportion of individuals residing in the region correctly identified as ALS cases by the algorithm were calculated.

Main outcomes measures: prevalence and incidence rates.

Results: a total of 1,031 ALS patients (>=18 years) were identified: 408 cases in Tuscany, 546 in Lazio, and 77 in Umbria. ALS standardised prevalence (per 100,000) was similar among regions: 12.31 in Tuscany, 11.52 in Lazio, and 9.90 in Umbria. The 5-year crude rates were higher in men, and in people aged 65-79 years. Among 310 patients included in the clinical dataset, 263 (84.8%) were correctly identified by the algorithm based on health administrative databases.

Conclusions: ALS prevalence and incidence in three Central Italy Regions are rather similar, but slightly higher than those previously reported. This finding is plausible, given that previous results relate to at least ten years ago and evidenced increasing trends. Overall, the results of this paper encourage the use of administrative data to produce occurrence estimates, useful to both epidemiological surveillance and research and healthcare policies.

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意大利三个大区肌萎缩性脊髓侧索硬化症的发病率和流行率：基于行政健康记录的研究。

目的：利用卫生行政数据库估计意大利三个大区（拉齐奥、托斯卡纳和翁布里亚）肌萎缩侧索硬化症（ALS）的发病率和流行率：居住在拉齐奥大区、翁布里亚大区和托斯卡纳大区的 ALS 患者是通过基于三个不同行政数据库的算法确定的：医院出院记录、医疗共同支付豁免和急诊科（研究期间为 2014-2019 年）。研究人员于2019年12月31日计算了粗患病率、年龄患病率和性别患病率，并按地区、年份和性别对2014-2019年间ALS的发病率进行了标准化处理。利用拉齐奥大区现有的临床数据集，计算了该算法正确识别为 ALS 病例的该大区居民比例：结果：共发现 1031 例 ALS 患者（大于等于 18 岁）：托斯卡纳 408 例，拉齐奥 546 例，翁布里亚 77 例。各地区的 ALS 标准发病率（每 10 万人）相似：托斯卡纳为 12.31 例，拉齐奥为 11.52 例，翁布里亚为 9.90 例。男性和 65-79 岁人群的 5 年粗发病率较高。在纳入临床数据集的 310 名患者中，有 263 人（84.8%）通过基于卫生行政数据库的算法被正确识别：意大利中部三个大区的 ALS 患病率和发病率相当接近，但略高于之前的报告。考虑到之前的结果至少与十年前有关，并显示出增长趋势，这一发现是可信的。总之，本文的结果鼓励使用行政数据来估算发病率，这对流行病学监测、研究和医疗保健政策都很有用。

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

Epidemiologia & Prevenzione 医学-公共卫生、环境卫生与职业卫生

CiteScore

2.60

自引率

14.30%

发文量

审稿时长

>12 weeks

期刊介绍： Epidemiologia & Prevenzione, oggi organo della Associazione italiana di epidemiologia, raccoglie buona parte delle migliori e originali esperienze italiane di ricerca epidemiologica e di studio degli interventi per la prevenzione e la sanità pubblica. La rivista – indicizzata su Medline e dotata di Impact Factor – è un canale importante anche per la segnalazione al pubblico internazionale di contributi che altrimenti circolerebbero soltanto in Italia. E&P in questi decenni ha svolto una funzione di riferimento per la sanità pubblica ma anche per i cittadini e le loro diverse forme di aggregazione. Il principio che l’ha ispirata era, e rimane, che l’epidemiologia ha senso se è funzionale alla prevenzione e alla sanità pubblica e che la prevenzione ha ben poche possibilità di realizzarsi se non si fonda su valide basi scientifiche e se non c’è la partecipazione di tutti i soggetti interessati. Modalità di comunicazione aggiornate, metodologia statistica ed epidemiologica rigorosa, validità degli studi e solidità delle interpretazioni dei risultati sono la solida matrice su cui E&P è costruita. A questa si accompagna una forte responsabilità etica verso la salute pubblica, che oggi ha ampliato in forma irreversibile il suo orizzonte, e include in forma sempre più consapevole non solo gli esseri umani, ma l’intero pianeta e le modificazioni che l’uomo apporta all’universo in cui vive. L’ambizione è che l’offerta di nuovi strumenti di comunicazione, informazione e formazione, soprattutto attraverso l''uso di internet, renda la rivista non solo un tradizionale veicolo di contenuti e analisi scientifiche, ma anche un potente strumento a disposizione di una comunità di interessi e di valori che ha a cuore la salute pubblica.