Beyond Gender Identity Disorder Diagnoses Codes: An Examination of Additional Methods to Identify Transgender Individuals in Administrative Databases

Med Care. 2020 Oct;58(10):903-911. doi: 10.1097/MLR.0000000000001362.

Abstract

Background: Large administrative databases often do not capture gender identity data, limiting researchers' ability to identify transgender people and complicating the study of this population.

Objective: The objective of this study was to develop methods for identifying transgender people in a large, national dataset for insured adults.

Research design: This was a retrospective analysis of administrative claims data. After using gender identity disorder (GID) diagnoses codes, the current method for identifying transgender people in administrative data, we used the following 2 strategies to improve the accuracy of identifying transgender people that involved: (1) Endocrine Disorder Not Otherwise Specified (Endo NOS) codes and a transgender-related procedure code; or (2) Receipt of sex hormones not associated with the sex recorded in the patient's chart (sex-discordant hormone therapy) and an Endo NOS code or transgender-related procedure code.

Subjects: Seventy-four million adults 18 years and above enrolled at some point in commercial or Medicare Advantage plans from 2006 through 2017.

Results: We identified 27,227 unique transgender people overall; 18,785 (69%) were identified using GID codes alone. Using Endo NOS with a transgender-related procedure code, and sex-discordant hormone therapy with either Endo NOS or transgender-related procedure code, we added 4391 (16%) and 4051 (15%) transgender people, respectively. Of the 27,227 transgender people in our cohort, 8694 (32%) were transmasculine, 3959 (15%) were transfeminine, and 14,574 (54%) could not be classified.

Conclusion: In the absence of gender identity data, additional data elements beyond GID codes improves the identification of transgender people in large, administrative claims databases.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Adult
  • Aged
  • Data Analysis*
  • Databases, Factual*
  • Endocrine System Diseases
  • Female
  • Gender Dysphoria / diagnosis
  • Gonadal Hormones / administration & dosage
  • Humans
  • Male
  • Medicare
  • Middle Aged
  • Retrospective Studies
  • Transgender Persons / classification*
  • Transgender Persons / statistics & numerical data
  • United States

Substances

  • Gonadal Hormones