Validation of autism spectrum disorder diagnoses recorded in the Clinical Practice Research Datalink, 1990-2014.
Validation of autism spectrum disorder diagnoses recorded in the Clinical Practice Research Datalink, 1990-2014.
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DOI：
10.2147/clep.s139107
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发表时间：
2017
影响因子：
3.9
通讯作者：
Jick SS
中科院分区：
文献类型：
--
作者：
Hagberg KW;Jick SS
先前的研究报告称，临床实践研究数据链（CPRD）中记录的自闭症谱系障碍（ASD）诊断的有效性很高;然而，自2004年发表的最后一项研究以来，诊断标准和筛查实践已经发生了变化。1)计算CPRD中记录的ASD诊断与原始病历相比的阳性预测值（PPV），2）描述病例特征和全科医生随时间推移在电子数据中记录的支持ASD诊断的临床代码的使用。我们在1990年至2014年的CPRD中确定了患有ASD（自闭症谱系障碍，自闭症，自闭症或广泛性发育障碍）的儿童。我们评估了电子病历中存在的代码，这些代码表明存在发育迟缓、言语迟缓、行为问题和其他支持性临床代码（例如，治疗、转诊等）。我们还评价了这些临床代码随时间记录的变化。我们将电子病历中的信息与病例样本的原始病历进行了比较，并计算了CPRD中记录的ASD诊断的PPV。我们确定了2154名患有ASD的儿童。诊断时的平均年龄为5.8岁，84%的病例为男性。大多数（78.4%）在其电子病历中有1个ASD诊断代码。大约一半的病例有一个代码指示行为问题，发育迟缓，或语言延迟，24.7%的代码指示专家转诊或访问。通过对原始病历的审查，CPRD中ASD诊断的PPV为91.9%。这项研究的结果表明，在CPRD中记录的ASD诊断是可靠的，可以放心地用于研究ASD。
Prior studies have reported that the validity of autism spectrum disorder (ASD) diagnoses recorded in the Clinical Practice Research Datalink (CPRD) was high; however, diagnostic criteria and screening practices have changed since the last study was published in 2004. 1) To calculate the positive predictive value (PPV) of ASD diagnoses recorded in the CPRD compared to original medical records and 2) to describe characteristics of cases and use of clinical codes that support the ASD diagnosis as recorded in the electronic data by general practitioners over time. We identified children with a code for ASD (autism spectrum disorder, autism, Asperger’s, or pervasive developmental disorder) in the CPRD from 1990 to 2014. We evaluated presence of codes in the electronic medical record indicating the presence of developmental delay, speech delay, behavioral problems, and other supporting clinical codes (e.g., therapy, referrals, etc.). We also evaluated changes in recording of these clinical codes over time. We compared the information present in the electronic medical record to original medical records for a sample of cases and calculated PPVs of ASD diagnoses recorded in the CPRD. We identified 2154 children with a code for ASD. The mean age at diagnosis was 5.8 years, and 84% of cases were male. The majority (78.4%) had 1 ASD diagnosis code in their electronic medical record. Approximately half of the cases had a code indicating behavioral problem, developmental delay, or speech delay, and 24.7% had a code indicating specialist referral or visit. After review of original medical records, the PPV of ASD diagnoses recorded in the CPRD was 91.9%. The results of this study suggest that ASD diagnoses recorded in the CPRD are reliable and can be used with confidence to study ASD.