Registration of Amyotrophic Lateral Sclerosis: Validity in the Danish National Patient Registry.

IF 3.4 2区医学 Q1 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH

Clinical Epidemiology Pub Date : 2024-06-06 eCollection Date: 2024-01-01 DOI:10.2147/CLEP.S458661

Lotte Sahin Levison, Peter Jepsen, Henning Andersen

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引用次数: 0

Abstract

Purpose: Health care databases are a valuable source for epidemiological research on amyotrophic lateral sclerosis (ALS) if diagnosis codes are valid. We evaluated the validity of the diagnostic codes for ALS in the Danish National Patient Registry (DNPR).

Patients and methods: We obtained data from the DNPR for all adult (>17 years) patients registered with ALS in Denmark between 1987 and 2022 (median population of 4.2 million during the study period). We randomly selected adult patients living in the North Denmark Region and Central Denmark Region (median population 1.4 million), with a primary discharge diagnosis code of ALS, diagnosed at three departments of neurology. We retrieved and reviewed medical records and estimated the positive predictive value (PPV) of the ALS diagnosis.

Results: Over 36 years, we identified 5679 patients. From the validation cohort of 300 patients, we were able to retrieve 240 (80%) medical records, and 215 ALS diagnoses were confirmed. The overall positive predictive value was 89.6% (95% confidence interval (CI): 85.1-92.8). The highest PPV was achieved for diagnoses registered for patients aged ≥70 years (93.8; 95% CI: 86.2-97.3) compared to patients <60 years (83.4; 95% CI: 73.3-90.7).

Conclusion: We found a high PPV of primary diagnostic codes for ALS from Danish departments of neurology, demonstrating high validity. Thus, the DNPR is a well-suited data source for large-scale epidemiological research on ALS.

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肌萎缩侧索硬化症登记：丹麦全国患者登记的有效性。

目的：如果诊断代码有效，医疗保健数据库是肌萎缩性脊髓侧索硬化症（ALS）流行病学研究的重要来源。我们评估了丹麦全国患者登记处（DNPR）中 ALS 诊断代码的有效性：我们从 DNPR 中获得了 1987 年至 2022 年期间丹麦所有登记的 ALS 成人患者（大于 17 岁）的数据（研究期间的中位人口为 420 万）。我们随机选取了居住在北丹麦大区和中丹麦大区（中位数人口为 140 万）的成年患者，他们的主要出院诊断代码为 ALS，并在三个神经内科确诊。我们检索并审查了医疗记录，估算了 ALS 诊断的阳性预测值 (PPV)：36 年间，我们共发现了 5679 名患者。从 300 名患者的验证队列中，我们检索到 240 份（80%）病历，确诊了 215 例 ALS 患者。总体阳性预测值为 89.6%（95% 置信区间 (CI)：85.1-92.8）。与年龄≥70 岁的患者相比，年龄≥70 岁患者登记的诊断 PPV 最高（93.8；95% CI：86.2-97.3）：我们发现丹麦神经内科对 ALS 的主要诊断代码具有很高的 PPV 值，显示出很高的有效性。因此，DNPR 是 ALS 大规模流行病学研究的理想数据源。

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

Clinical Epidemiology Medicine-Epidemiology

CiteScore

6.30

自引率

5.10%

发文量

169

审稿时长

16 weeks

期刊介绍： Clinical Epidemiology is an international, peer reviewed, open access journal. Clinical Epidemiology focuses on the application of epidemiological principles and questions relating to patients and clinical care in terms of prevention, diagnosis, prognosis, and treatment. Clinical Epidemiology welcomes papers covering these topics in form of original research and systematic reviews. Clinical Epidemiology has a special interest in international electronic medical patient records and other routine health care data, especially as applied to safety of medical interventions, clinical utility of diagnostic procedures, understanding short- and long-term clinical course of diseases, clinical epidemiological and biostatistical methods, and systematic reviews. When considering submission of a paper utilizing publicly-available data, authors should ensure that such studies add significantly to the body of knowledge and that they use appropriate validated methods for identifying health outcomes. The journal has launched special series describing existing data sources for clinical epidemiology, international health care systems and validation studies of algorithms based on databases and registries.