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Validity of International Classification of Diseases Codes for Identifying Neuro-Ophthalmic Disease in Large Data Sets: A Systematic Review
Open accessAbstract
BACKGROUND: Administrative health claims data have been used for research in neuro-ophthalmology, but the validity of International Classification of Diseases (ICD) codes for identifying neuro-ophthalmic conditions is unclear. EVIDENCE ACQUISITION: We performed a systematic literature review to assess the validity of administrative claims data for identifying patients with neuro-ophthalmic disorders. Two reviewers independently reviewed all eligible full-length articles and used a standardized abstraction form to identify ICD code-based definitions for 9 neuro-ophthalmic conditions and their sensitivity, specificity, positive predictive value (PPV), and negative predictive value (NPV). A quality assessment of eligible studies was also performed. RESULTS: Eleven articles that met criteria for inclusion are as follows: 3 studies of idiopathic intracranial hypertension (PPV 54%-91% and NPV 74%-85%), 2 studies of giant cell arteritis (sensitivity 30%-96% and PPV 94%), 3 studies of optic neuritis (sensitivity 76%-99%, specificity 83%-100%, PPV 25%-100%, and NPV 98%-100%), 1 study of neuromyelitis optica (sensitivity 60%, specificity 100%, PPV 43%-100%, and NPV 98%-100%), 1 study of ocular motor cranial neuropathies (PPV 98%-99%), and 2 studies of myasthenia gravis (sensitivity 53%-97%, specificity 99%-100%, PPV 5%-90%, and NPV 100%). No studies met eligibility criteria for nonarteritic ischemic optic neuropathy, thyroid eye disease, and blepharospasm. Approximately 45.5% provided only one measure of diagnostic accuracy. Complete information about the validation cohorts, inclusion/exclusion criteria, data collection methods, and expertise of those reviewing charts for diagnostic accuracy was missing in 90.9%, 72.7%, 81.8%, and 36.4% of studies, respectively. CONCLUSIONS: Few studies have reported the validity of ICD codes for neuro-ophthalmic conditions. The range of diagnostic accuracy for some disorders and study quality varied widely. This should be taken into consideration when interpreting studies of neuro-ophthalmic conditions using administrative claims data.
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“Because a definitive diagnosis often requires multiple visits, we improved specificity by requiring a second ischemic optic neuropathy diagnosis code in one of the definitions.”
From Semaglutide and Nonarteritic Anterior Ischemic Optic Neuropathy (2025) · cites this paper as [54]
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“For both cohort and self-controlled case-series analyses, we used a comprehensive set of study diagnostics, eg, preexposure patient characteristic balance, empirical clinical equipoise, minimum power requirement, and negative control experiments, to evaluate systematic error, residual bias, reliability, and the generalizability of our comparisons.”
From Semaglutide and Nonarteritic Anterior Ischemic Optic Neuropathy (2025) · cites this paper as [43]
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Risk of Nonarteritic Anterior Ischemic Optic Neuropathy in Patients Prescribed Semaglutide
Hathaway, J. T., Shah, M. P., Hathaway, D. B., Zekavat, S. M., Krasniqi, D., Gittinger, J. W., Cestari, D., Mallery, R., Abbasi, B., Bouffard, M., et al. (2024) · JAMA Ophthalmology · doi:10.1001/jamaophthalmol.2024.2296 · Cited by 318
Semaglutide and Nonarteritic Anterior Ischemic Optic Neuropathy
Cai, C. X., Hribar, M., Baxter, S., Goetz, K., Swaminathan, S. S., Flowers, A., Brown, E. N., Toy, B., Xu, B., Chen, J., et al. (2025) · JAMA Ophthalmology · doi:10.1001/jamaophthalmol.2024.6555 · Cited by 129
Metadata
- Authors
- Hamedani, A. G., De Lott, L. B., Deveney, T., & Moss, H. E.
- Affiliations
- University of Michigan (US)
- Corresponding author
- Hamedani, Ali G.
- Venue
- Journal of Neuro-Ophthalmology
- Published
- 2020-06-19
- Volume
- 40
- Issue
- 4
- Pages
- 514-519
- ISSN
- 1070-8022 (ISSN-L)
- PMC
- PMC7678809
- OpenAlex
- W3037672351
- Cited by
- 19
- References
- 2
- Citations by year
- 2026: 5 · 2025: 3 · 2024: 3 · 2023: 2 · 2022: 3 · 2021: 3
- FWCI
- 0.31
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Journal of Neuro-Ophthalmology (publishedVersion)
- PubMed (publishedVersion)
- PubMed Central (acceptedVersion)
- Funders
- National Eye Institute (K23EY027849, P30EY026877)
- National Institute of Neurological Disorders and Stroke (T32NS061779)
- Topics
- Health Sciences › Health Professions › Health Information Management › Medical Coding and Health Information
- Health Sciences › Medicine › Ophthalmology › Glaucoma and retinal disorders
- Health Sciences › Medicine › Ophthalmology › Ophthalmology and Visual Health Research
- Keywords
- ICD codes, neuro-ophthalmic disorders, diagnostic accuracy, sensitivity and specificity, idiopathic intracranial hypertension, giant cell arteritis, optic neuritis, neuromyelitis optica, myasthenia gravis, nonarteritic anterior ischemic optic neuropathy, Graves' ophthalmopathy, blepharospasm
- MeSH terms
- Eye Diseases, Humans, Neurology, Ophthalmology, Databases, Factual
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