Seeing the unseen: how can we best identify transgender women within the Veterans Affairs healthcare system’s electronic medical record?

Author:

Nik-Ahd Farnoosh1,Waller Justin2,De Hoedt Amanda M2,Garcia Maurice M3,Figueiredo Jane C4,Carroll Peter R1,Cooperberg Matthew R156,Freedland Stephen J2347

Affiliation:

1. University of California San Francisco Department of Urology, , San Francisco, CA , United States

2. Veterans Affairs Health Care System Division of Urology, , Durham, NC , United States

3. Department of Urology, Cedars-Sinai Medical Center , Los Angeles, CA , United States

4. Cedars-Sinai Medical Center Samuel Oschin Comprehensive Cancer Institute, , Los Angeles, CA , United States

5. University of California San Francisco Department of Epidemiology and Biostatistics, , San Francisco, CA , United States

6. San Francisco Veterans Affairs Medical Center Section of Urology, , San Francisco, CA, United States

7. Cedars-Sinai Medical Center Center for Integrated Research on Cancer and Lifestyle, , Los Angeles, CA , United States

Abstract

Abstract Background One challenge in transgender research is reliably identifying patients through electronic medical records data, as there is no universal transgender International Classification of Diseases (ICD) code, but rather multiple ICD codes that can be used. Aim To explore the sensitivity and specificity of 5 commonly used ICD codes to identify transgender patients overall and transgender women specifically (assigned male sex at birth) by using data from the Veterans Affairs (VA), the largest integrated health system in the United States. Methods Patients aged ≥18 years were identified via ICD-9 codes 302.5 and 302.6 (Ninth Revision) and ICD-10 codes F64.0, F64.8, and F64.9 (Tenth Revision) using VA health records from 2000 to 2021 and stratified by bilateral orchiectomy status. Outcomes Detailed chart review was performed on 32 randomly selected patients for each code (half with and half without orchiectomy) to confirm transgender status and to perform descriptive analyses. Results For each ICD code, rates of confirmed transgender status ranged from 88% to 100% for those with and without an orchiectomy, with the majority being transgender women (consistent with most veterans being assigned male sex at birth). Most transgender women (66%-100%) were undergoing estrogen gender-affirming therapy. The majority of provider-driven entries of transgender status took place from 2011 to 2020, with 75% of entries made from 2011 to 2020, consistent with increased recognition and societal acceptance of this population. False negatives were detected at a rate of 15%. Based upon these 5 ICD codes alone, we estimate that the VA has records for 9,449 to 10,738 transgender individuals. Clinical Implications All 5 codes are very sensitive in identifying transgender patients, and the combination of these codes with orchiectomy is extremely sensitive in identifying transgender women, specifically. Strengths and Limitations Major strengths of the study are the use of universal ICD codes and a large patient sample size that spans health records nationally and across multiple decades, potentially making our data more generalizable. The main limitation of this study is that subanalyses were performed on a limited number of patients, which prevented us from capturing all false positives and thus from calculating specificity for each code. Similarly, our true negatives were derived from a small, random subset of the population; as such, our calculation for specificity is an estimate. Conclusion This study highlights a novel method to identify transgender women and paves the way for further research.

Publisher

Oxford University Press (OUP)

Subject

Urology,Reproductive Medicine,Endocrinology,Endocrinology, Diabetes and Metabolism,Psychiatry and Mental health

Reference23 articles.

1. Transgender people: health at the margins of society;Winter;Lancet,2016

2. Systematic review and meta-analysis of prevalence studies in transsexualism;Arcelus;Eur Psychiatry,2015

3. Global health burden and needs of transgender populations: a review;Reisner;Lancet,2016

4. Estimating the prevalence of HIV and sexual behaviors among the US transgender population: a systematic review and meta-analysis, 2006-2017;Becasen;Am J Public Health,2019

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