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AS407 - A feasibility study to assess the accuracy of self-reported glaucoma outcomes and participant interest in participating in ancillary glaucoma studies

[This page is intended to provide a study summary, the sections of which are below. Please complete these sections, as applicable. The headings below are suggested headings. You can remove inapplicable sections, or add new ones relevant to your study]

Investigator Names and Contact Information

Thasarat S. Vajaranant, MD [ thasarat@uic.edu]

ABSTRACT: The Accuracy of Self-Reported Glaucoma in the Women's Health Initiative

Vajaranant TS,¹ Maki PM,² Pasquale LR,³ Khan F,¹ Mares J,⁴ Meyer KJ,⁴ Haan MN⁵

¹Department of Ophthalmology and Visual Sciences, University of Illinois at Chicago; ² Department of Psychiatry, University of Illinois at Chicago; ³Department of Ophthalmology, Harvard Medical School; ⁴Department of Ophthalmology and Visual Sciences, University of Wisconsin School of Medicine and Public Health; and ⁵Department of Epidemiology and Biostatistics, University of California at San Francisco.

Objective

Women comprise the majority of individuals affected by glaucoma, a leading cause of irreversible blindness worldwide. Previous studies suggest that early menopause increases the risk for glaucoma. Epidemiologic studies of large national health cohorts sometimes rely on self-reported eye disease without validation of self-reports against medical records. We determined the accuracy of self-reported vs. medically diagnosed glaucoma in a subset of the Women's Health Initiative (WHI), a large NIH-funded cohort study involving 161,808 post-menopausal women.

Design

We recruited women who reported glaucoma either at WHI enrollment (1994–1998) or in annual health update questionnaires through 2005. Eligible women were selected from two ancillary eye studies: the WHI Sight Exam (WHISE) study and the Carotenoids in Age-Related Eye Disease Study (CAREDS). In a follow-up phone interview for this pilot study, the selected women were asked if eye care providers told them that they had glaucoma. Additionally, they were asked to release their medical records to verify the diagnoses. We used a method described in the Nurses' Health Study (NHS) to confirm the diagnosis of primary open-angle glaucoma (POAG). POAG was defined as glaucoma without secondary causes and open-angle was confirmed by gonioscopy or absence of adverse effects after dilated exams. Reliable characteristic glaucomatous visual field defects were used as a main diagnostic criterion (perimetric POAG).

Results

A total of 276 women were contacted and 200 (72.5%) consented to a phone interview (15.9% declined, 2.5% were deceased, and 9.1% were non-responders). Medical records were obtained on 186 of the 200 consented (93.0%). Of the 186, 52.7% (98/186) had no available or insufficient visual field data. POAG was verified in 29.3% (55/186). Limiting to the 88 women with sufficient visual field data, POAG was verified in 62.5% (55/88). Although all women reported glaucoma in sometime between 1994 and 2005, only 46.5% (86/185) confirmed during phone interviews during 2013. Of those who reported glaucoma twice, POAG was verified in 50.0% (43/86). Of these 86 women, 63 had sufficient visual fields and POAG was verified in 68.3% (43/63).

Conclusions

We were able to verify 29% of self-reports of perimetric POAG in the WHI, which is similar to that of the NHS (35%). The accuracy of self-reported glaucoma increased from 29% to 50% if glaucoma was reported twice. This information is essential as it helps assess the validity of epidemiologic analyses using self-reported glaucoma and/or plan future nested case-control study of POAG in the WHI.

Support

The WHI Extension Feasibility Study Funding Program and American Glaucoma Society,

Mid-Career Physician-Scientist Award (TSV); K23EY022949 (TSV), P30EY001792, Unrestricted Grant from Research to Prevent Blindness