Department of Endocrinology, Aarhus University Hospital, Aarhus, Denmark.
Department of Endocrinology, Aalborg University Hospital, Aalborg, Denmark.
Clin Epidemiol. 2014 Sep 1;6:295-9. doi: 10.2147/CLEP.S63758. eCollection 2014.
The incidence of acromegaly is uncertain, since population-based studies are few. In the absence of a specific acromegaly registry, the Danish National Registry of Patients (DNRP) becomes a potential source of data for studying the epidemiology of acromegaly, by linking all hospital discharge diagnoses to the personal identification numbers of individual Danish inhabitants. The validity of the DNRP with respect to acromegaly, however, remains to be tested. The aim of this study was to validate the International Classification of Diseases (ICD) codes for acromegaly (ICD-8: 25300, 25301. ICD-10: E22.0) as used in the DNRP, and to assess the influence of various registration patterns on the accuracy of registry data.
We identified patients registered with ICD codes for the diagnosis of acromegaly or other pituitary disorders during the period 1991-2009. Data on the institutional origin of each registration and the number of relevant DNRP registrations were recorded, and systematic patient chart reviews were performed to confirm the diagnosis.
In total, 110 cases of acromegaly were confirmed, compared with 275 registered cases, yielding a positive predictive value (PPV) of 40%. When restricting the search to the regional highly specialized department of endocrinology, the PPV increased to 53% with no loss of cases with confirmed acromegaly. With a requirement of at least one, two, or three DNRP registrations, the PPV increased, but with a concurrent loss of confirmed cases.
The DNRP seems to be a useful source for identifying new cases of acromegaly, especially when restricting the search to a relevant regional highly specialized department. The PPV of DNRP data used for this purpose can be increased by including only cases with several registrations. A similar approach may be successfully applied to other rare diseases in which continuity of care is provided by highly specialized departments.
肢端肥大症的发病率不确定，因为基于人群的研究很少。由于缺乏特定的肢端肥大症登记处，丹麦国家患者登记处（DNRP）通过将所有医院出院诊断与丹麦居民的个人身份号码相关联，成为研究肢端肥大症流行病学的潜在数据来源。然而，DNRP 对肢端肥大症的有效性仍有待检验。本研究旨在验证 DNRP 中用于肢端肥大症的国际疾病分类（ICD）代码（ICD-8：25300、25301. ICD-10：E22.0），并评估各种登记模式对登记数据准确性的影响。
我们确定了在 1991-2009 年期间使用诊断为肢端肥大症或其他垂体疾病的 ICD 代码登记的患者。记录了每个登记的机构来源和相关 DNRP 登记的数量，并进行了系统的患者病历审查以确认诊断。
共确诊肢端肥大症 110 例，而登记的 275 例中，阳性预测值（PPV）为 40%。当将搜索范围缩小到区域内分泌专科时，PPV 增加到 53%，而没有遗漏确诊的肢端肥大症病例。当要求至少有一个、两个或三个 DNRP 登记时，PPV 会增加，但同时也会失去确诊的病例。
DNRP 似乎是识别新肢端肥大症病例的有用来源，尤其是当将搜索范围缩小到相关的区域内分泌专科时。为此目的使用 DNRP 数据的 PPV 可以通过仅包括具有多个登记的病例来提高。这种方法可能会成功应用于其他由高度专业化的部门提供连续性护理的罕见疾病。
