Walitt Brian T, Constantinescu Florina, Katz James D, Weinstein Arthur, Wang Hong, Hernandez Rohini K, Hsia Judith, Howard Barbara V
Georgetown University, Washington, DC, USA.
J Rheumatol. 2008 May;35(5):811-8. Epub 2008 Apr 1.
The Women's Health Initiative (WHI), initiated in 1993, enrolled 161,808 postmenopausal women aged 50-79 years and followed them with annual questionnaires for 8 years in order to study major causes of morbidity and mortality. Our objective was to determine the most effective and efficient means to validate self-reported rheumatoid arthritis (RA) and systemic lupus erythematosus (SLE) in the WHI.
Data from 2 of 40 WHI clinical centers were used. Of these 7443 women, 643 self-reported RA and 106 self-reported SLE. Research coordinators contacted these women using mailers and telephone calls to obtain medical record releases and a Connective Tissue Screening Questionnaire (CSQ). Medical records were obtained on 286 self-reported RA and 34 self-reported SLE and reviewed by 3 rheumatologists blind to the self-reported diagnoses. Sensitivity, specificity, and the kappa statistic were computed to evaluate the level of agreement between self-report and chart review.
Self-reported RA was accurate only 14.7% (42/286 cases) of the time. Coupling the self-report to medication data improved the positive predictive value (PPV; 62.2%) and kappa (0.53), suggesting a moderate agreement to chart review. Self-reported SLE was accurate only 11.8% (4/34 cases) of the time. Coupling the self-report to medication data improved the PPV (40.0%) and kappa (0.44), suggesting a moderate agreement to chart review. The CSQ was inferior to using medication data but was substantially better than self-report alone.
The performance of disease self-report coupled with medication history in validating RA and SLE was very good and should obviate the need for time-consuming medical record reviews.
妇女健康倡议（WHI）始于1993年，招募了161808名年龄在50 - 79岁的绝经后女性，并通过年度问卷对她们进行了8年的跟踪，以研究发病和死亡的主要原因。我们的目的是确定在WHI中验证自我报告的类风湿性关节炎（RA）和系统性红斑狼疮（SLE）的最有效和高效的方法。
使用了WHI 40个临床中心中2个中心的数据。在这7443名女性中，643人自我报告患有RA，106人自我报告患有SLE。研究协调员通过邮件和电话联系这些女性，以获取病历授权和一份结缔组织筛查问卷（CSQ）。获取了286名自我报告患有RA和34名自我报告患有SLE的女性的病历，并由3名对自我报告诊断不知情的风湿病学家进行审查。计算敏感性、特异性和kappa统计量，以评估自我报告与病历审查之间的一致性水平。
自我报告的RA只有14.7%（42/286例）的时间是准确的。将自我报告与用药数据相结合提高了阳性预测值（PPV；62.2%）和kappa值（0.53），表明与病历审查有中度一致性。自我报告的SLE只有11.8%（4/34例）的时间是准确的。将自我报告与用药数据相结合提高了PPV（40.0%）和kappa值（0.44），表明与病历审查有中度一致性。CSQ不如使用用药数据，但比单独的自我报告要好得多。
疾病自我报告与用药史相结合在验证RA和SLE方面的表现非常好，应该无需进行耗时的病历审查。
