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Validation of Self-Report of Rheumatoid Arthritis and Systemic Lupus Erythematosus: The Women's Health Initiative

BRIAN T. WALITT, FLORINA CONSTANTINESCU, JAMES D. KATZ, ARTHUR WEINSTEIN, HONG WANG, ROHINI K. HERNANDEZ, JUDITH HSIA, and BARBARA V. HOWARD

ABSTRACT.

Objective.
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.

Methods. 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.

Results. 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.

Conclusion. 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. (First Release April 1 2008; J Rheumatol 2008;35:811-8)

Key Indexing Terms:

DIAGNOSTIC VALIDATION
SELF-REPORT
RHEUMATOID ARTHRITIS
SYSTEMIC LUPUS ERYTHEMATOSUS
WOMEN'S HEALTH INITIATIVE


From the Washington Hospital Center and George Washington University Hospital, Washington, DC; and MedStar Research Institute, Hyattsville, Maryland, USA.

The WHI program is funded by the National Heart, Lung and Blood Institute, US Department of Health and Human Services. Funding for our study was provided by an American College of Rheumatology Clinical Investigator Fellowship Award and a Washington Hospital Center Graduate Medical Education research grant.

B.T. Walitt, MD, MPH, Assistant Professor of Medicine; A. Weinstein, MD, Professor of Medicine; B.V. Howard, PhD, Professor of Medicine, Georgetown University, Washington, DC; J.D. Katz, MD, Associate Professor of Medicine; J. Hsia, MD, Professor of Medicine, George Washington University; F. Constantinescu, MD, Assistant Professor of Medicine, Virginia Commonwealth University, Richmond, Virginia; H. Wang, MD; R.K. Hernandez, MPH, MedStar Research Institute.

Address reprint requests to Dr. B. Walitt, Washington Hospital Center, 110 Irving Street, Washington, DC 20010. E-mail: Brian.t.walitt@medstar.net

Accepted for publication January 9, 2008.




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