Introduction

Existing estimates of PD prevalence in Denmark are lower than those in the rest of Europe and are based on identification via single registries. Hence, are aim was to use a combined registry/self-report survey approach to identify people with PD and also investigate whether using different registry methods led to differences in the accuracy, completeness and characteristics of the identified cohorts.

Methods

This study had a cross-sectional design using routinely collected health registry data to identify adults, ≥18 years of age and resident in Denmark, with PD from either the Danish National Patient (DNP) registry or Danish Prescription Medicines (DPM) registry. Those identified were asked to confirm their PD diagnosis using a national self-report survey.

Results

13,433 people were identified potentially as having PD via the DNP or DPM registry and sent a survey. Of these, 9094 responded (68 %) of which 85 % confirmed they had PD (n = 7763; 194/100,000; 95%CI:7650–7876). When adjusting for non-respondents, assuming an equal rate of confirmation in respondents and non-respondents, estimated Danish PD population was 11,467 (198.4/100,000; 95 % CI:197.2–199.6). Identification of people using those found in both registries led to 98 % confirming they had PD versus using one registry: DNP 93 % and DPM 88 %. No clear differences in sociodemographic characteristics were found between different registry identification methods.

Conclusions

Estimated PD population in Denmark was significantly higher than previous Danish estimates and close to existing estimates in other European countries. The most accurate PD population was identified when including those found in both the DNP and DPM registries.

中文翻译：

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使用医疗保健登记处和自我报告的调查数据确定丹麦帕金森病的患病率

介绍

丹麦对帕金森病患病率的现有估计低于欧洲其他国家，并且基于单一登记处的识别。因此，我们的目标是使用登记/自我报告相结合的调查方法来识别帕金森病患者，并调查使用不同的登记方法是否会导致所识别群体的准确性、完整性和特征存在差异。

方法

本研究采用横断面设计，使用常规收集的健康登记数据来识别来自丹麦国家患者 (DNP) 登记处或丹麦处方药 (DPM) 登记处的 18 岁以上且居住在丹麦的患有 PD 的成年人。那些被确定的人被要求通过全国自我报告调查来确认他们的帕金森病诊断。

结果

通过 DNP 或 DPM 登记处，13,433 人被确定为可能患有帕金森病，并发送了一份调查。其中，9094 人做出回应（68%），其中 85% 确认自己患有 PD（n = 7763；194/100,000；95%CI：7650–7876）。在对非受访者进行调整时，假设受访者和非受访者的确认率相同，估计丹麦 PD 人口为 11,467 人（198.4/100,000；95% CI：197.2–199.6）。与使用一个登记处相比，使用两个登记处的信息对人进行识别后，98% 的人确认自己患有 PD：DNP 93% 和 DPM 88%。不同的登记识别方法之间没有发现社会人口特征的明显差异。

结论

丹麦的 PD 人口估计数显着高于丹麦之前的估计数，并接近其他欧洲国家的现有估计数。当包括 DNP 和 DPM 登记中发现的人群时，确定了最准确的 PD 人群。