Department of Cancer Control & Prevention, Shanghai Municipal Center for Disease Control and Prevention, 1380 Zhongshan Road West, Shanghai 200336, China.
BMC Med Res Methodol. 2011 May 18;11:72. doi: 10.1186/1471-2288-11-72.
Self-reported information is an important tool for collecting clinical information for epidemiologic studies and in clinical settings where electronic medical records are not employed and shared.
Using data collected from the Shanghai Breast Cancer Survival Study (SBCSS), a population-based, prospective cohort study of 5,042 women diagnosed with breast cancer in Shanghai, China, we compared the concordance of patient questionnaire responses to a survey administered approximately 6 months after cancer diagnosis with medical chart information obtained from the diagnostic hospitals for several disease and treatment-related variables.
Of 5,042 SBCSS participants, medical chart information was available for 4,948 women (98.1%). Concordance between patient self-reported and medical chart information was high for the majority of disease-related variables, including: diagnosing hospital (agreement: 98.7%, kappa: 0.99), type of surgery conducted (94.0%, 0.53), ER/PR status (94.5%, 0.91), and tumor position (98.2%, 0.97), as well as for important calendar dates, such as date of diagnosis, surgery, and first chemotherapy treatment. The 10 most commonly used chemotherapeutic drugs were all reported with agreement rates of at least 82%, with associated kappa values that ranged from 0.41 for calcium folinate to 0.76 for vinorelbine.
Our study found high validity for patient self-reported information for a variety of disease and treatment-related variables, suggesting the utility of self-reports as an important source of clinical information for both epidemiological research and patient care.
自我报告信息是收集流行病学研究和临床环境中临床信息的重要工具，在这些环境中，电子病历未被使用和共享。
本研究使用了来自上海乳腺癌生存研究（SBCSS）的数据，该研究是一项针对中国上海 5042 名乳腺癌患者的基于人群的前瞻性队列研究。我们将患者在癌症诊断后约 6 个月接受的问卷调查的响应与从诊断医院获得的医疗图表信息进行了比较，以评估几种与疾病和治疗相关的变量。
在 5042 名 SBCSS 参与者中，有 4948 名女性（98.1%）的医疗图表信息可用。对于大多数与疾病相关的变量，患者自我报告和医疗图表信息之间的一致性很高，包括：诊断医院（一致性：98.7%，kappa：0.99）、进行的手术类型（94.0%，0.53）、ER/PR 状态（94.5%，0.91）和肿瘤位置（98.2%，0.97），以及重要的日历日期，如诊断、手术和第一次化疗治疗的日期。10 种最常用的化疗药物的报告一致性率均至少为 82%，相关的 kappa 值范围从亚叶酸钙的 0.41 到长春瑞滨的 0.76。
我们的研究发现，患者自我报告的各种疾病和治疗相关变量的有效性很高，这表明自我报告作为流行病学研究和患者护理的重要临床信息来源具有实用性。
