Pelvic floor disorders in women who consult primary care clinics: development and validation of case definitions using primary care electronic medical records

Abstract

BACKGROUND: To date, there has been no validated method to identify cases of pelvic floor disorders in primary care electronic medical record (EMR) data. We aimed to develop and validate symptom-based case definitions for urinary incontinence, fecal incontinence and pelvic organ prolapse in women, for use in primary care epidemiologic or clinical research. METHODS: Our retrospective study used EMR data from the Southern Alberta Primary Care Research Network (SAPCReN) and the Canadian Primary Care Sentinel Surveillance Network (CPCSSN) in southern Alberta. Trained researchers remotely reviewed a random sample of EMR charts of women aged 18 years or older from 6 rural and urban clinics to validate case definitions for urinary incontinence, fecal incontinence and pelvic organ prolapse. We calculated sensitivity, specificity, positive predictive value (PPV) and negative predictive value (NPV), and estimated SAPCReN prevalence as appropriate. RESULTS: Charts of 900 women were included. Sensitivity was 81.9% (95% confidence interval [CI] 75.1-87.2) for urinary incontinence, 61.2% (95% CI 46.2-74.5) for fecal incontinence, and 51.8% (95% CI 40.6-62.8) for pelvic organ prolapse. Corresponding specificity values were 71.9% (95% CI 68.4-75.1), 99.2% (95% CI 98.2-99.6) and 98.8% (95% CI 97.7-99.4), PPVs 40.6% (95% CI 35.4-46.0), 81.1% (95% CI 64.3-91.4) and 81.1% (95% CI 67.6-90.1), and NPVs 94.4% (95% CI 92.1-96.1), 97.8% (95% CI 96.5-98.6) and 95.3% (95% CI 93.6-96.6). The SAPCReN-observed prevalence for urinary incontinence was 29.7% (95% CI 29.3-30.0), but the adjusted prevalence was 2.97%. INTERPRETATION: The case definition for urinary incontinence met our standard for validity (sensitivity and specificity > 70%), and the case definitions for fecal incontinence and pelvic organ prolapse had PPVs greater than 80%. The urinary incontinence definition may be used in epidemiologic research, and those for fecal incontinence and pelvic organ prolapse may be used in quality-improvement studies or creation of disease registries. Our symptom-based case definitions could also be adapted for research in other EMR settings.