This HO_readme20240123.txt file was generated on 20240123 by Tiffany Ho ------------------- GENERAL INFORMATION ------------------- 1. Title of Dataset Transgender and Gender Diverse Adults in University of Utah Health 2. Author Information Principal Investigator Contact Information Name: Tiffany Ho Institution: University of Utah, Family and Preventive Medicine Address: 375 Chipeta Way, Salt Lake City, UT 84108 Email: tiffany.ho@hsc.utah.edu ORCID: 0000-0001-9332-9777 Associate or Co-investigator Contact Information Name: Sharon Talboys Institution: University of Utah, Family and Preventive Medicine, Division of Public Health Address: 375 Chipeta Way, Salt Lake City, UT 84108 Email: sharon.talboys@utah.edu ORCID: 0000-0001-6517-478X 3. Date of data collection (single date, range, approximate date) 20130101 to 20230430 4. Geographic location of data collection (where was data collected?): University of Utah Healthcare, Electronic Health Records 5. Information about funding sources that supported the collection of the data: Health Studies Fund, University of Utah Department of Family and Preventive Medicine -------------------------- SHARING/ACCESS INFORMATION -------------------------- 1. Licenses/restrictions placed on the data: CC BY NC - Allows others to use and share your data non-commercially and with attribution 2. Links to publications that cite or use the data: NA 3. Links to other publicly accessible locations of the data: NA 4. Links/relationships to ancillary data sets: NA 5. Was data derived from another source? No 6. Recommended citation for the data: Ho, Tiffany and Talboys, Sharon. 2024. "Transgender and Gender Diverse Adults in University of Utah Health". The Hive: University of Utah Research Data Repository. http://doi.org/10.7278/S50d-h68c-s203. --------------------- DATA & FILE OVERVIEW --------------------- 1. File List A. Filename: 20240111_DataDictionary_Ho Short description: provides explanation of each variable B. Filename: 20240111_Table4ActivelyManagedvsNot_Ho Short description: Each CSV file provides data used to calculate various tables including those who received gender-affirming care within the University of Utah Health care system. Table 4 is comparing those who received gender-affirming hormone therapy (GAHT) and/or gender-affirming surgery (GAS) with those who did not receive either. C. Filename: 20240111_table5GAHTvsGAS_Ho Short description: Table 5 compares the demographics of those who only received GAHT versus those who received GAS. D. Filename: 20240111_table6GAHT_Ho Short description: Table 6 compares those on estrogen- versus testosterone-based GAHT. E. Filename: 20240111_table7GAS_Ho Short description: Table 7 compares demographics of those who underwent feminizing versus masculinizing GAS. 2. Relationship between files: Each CSV file provides data used to calculate various tables including those who received gender-affirming care within the University of Utah Health care system. Variables and tables are comparing the demographics of various subpopulations within the cohort for gender-affirming hormone therapy and/or gender-affirming surgery. 3. Additional related data collected that was not included in the current data package: NA 4. Are there multiple versions of the dataset? yes/no No -------------------------- METHODOLOGICAL INFORMATION -------------------------- 1. Description of methods used for collection/generation of data: This retrospective cohort study examined clinical encounter data from a Utah-based healthcare system for individuals over the age of 18 years old seeking gender-affirming care. Clinical and administrative billing diagnosis encounters between January 2013 –April 2023 were used to determine the base cohort. Inpatient, outpatient, and procedural visits, as well as medication orders and laboratory results relevant to gender-affirming care were also retrieved. The data was derived from the health system’s enterprise data warehouse upon approval by the University of Utah’s Institutional Review Board (IRB_00159449). The diagnostic International Classification of Disease (ICD) version 9 and 10 codes specific for “gender dysphoria,” and TGD adults were selected based on methodology described in earlier studies. Adults aged 18 years and older were included in the dataset if they had at least one clinical encounter that billed specific codes commonly associated with TGD individuals Dubin S, Cook T, Liss A, Doty G, Moore K, Greene R, et al. Comparing Electronic Health Record Domains’ Utility to Identify Transgender Patients. Transgender Health. 2022 Feb 14;7(1):78–84. Roblin D, Barzilay J, Tolsma D, Robinson B, Schild L, Cromwell L, et al. A novel method for estimating transgender status using electronic medical records. Ann Epidemiol. 2016 Mar;26(3):198–203. Quinn VP, Nash R, Hunkeler E, Contreras R, Cromwell L, Becerra-Culqui TA, et al. Cohort profile: Study of Transition, Outcomes and Gender (STRONG) to assess health status of transgender people. BMJ Open. 2017 Dec 27;7(12):e018121. 2. Methods for processing the data: Race, ethnicity, marital status and sex related variables are used as in the raw dataset. The surgery cohort was identified by selecting those who have a CPT code associated with gender-affirming surgery codes. And first gender affirming surgery date was used as the index date for surgery cohort. The hormone cohort includes people who have at least 2 hormone prescriptions on different dates, and the first hormone therapy date was used as the index date for hormone cohort. Age at index date was calculated by subtracting birth date from index date, later categorized into groups. Body Mass Index was calculated two different ways. First method involves selecting Body Mass Index before and closest to index date, while the second method involves taking the mean of all Body Mass Index values before and at index date. Body Mass Index from first method later categorized into groups. Zip codes that are closest to index date was used to identify rural or urban status of the patients. The most repeated insurance status was picked as insurance type. 3. Instrument- or software-specific information needed to interpret the data: R Studio was used to generate the tables 4. Standards and calibration information, if appropriate: NA 5. Environmental/experimental conditions: None - this is a retrospective chart review 6. Describe any quality-assurance procedures performed on the data: The accuracy of the TGD cohort was verified via a random sample of 50 patients selected based on ICD codes with 100% accuracy. Furthermore, a random sample of 50 known TGD adults were selected from an outpatient clinic list and 100% of the known TGD adults appeared in the ICD based selection. Due to discordance in the type of hormone therapy, gender-affirming surgery and/or gender identity, manual chart review was completed for 101 TGD adults in the GAHT group and 22 were excluded as they did not meet the criteria for TGD. Thirty-nine adults had prescriptions for both testosterone- and estrogen-based therapy. Of those, five were excluded as they did not meet the criteria for TGD (all postmenopausal cis-women on hormone replacement therapy), four adults had detransitioned back to their natal sex, and one adult had active prescriptions for both injectable testosterone and oral estradiol. To reduce mis-categorization for gender-affirming surgeries, manual chart review was performed for 93 adults who had surgery types that were either incongruent with each other or with the category of GAHT (e.g. individual with hysterectomy who was also on estrogen due to endometrial cancer). Thirteen adults from the GAS group were excluded as they did not meet the criteria for TGD. 7. People involved with sample collection, processing, analysis and/or submission: Bayarmaa Mark (Biostatistician) ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: 20240111_Table4ActivelyManagedvsNot_Ho.csv ----------------------------------------- 1. Number of variables: 15 2. Number of cases/rows: 4764 3. Variable List See codebook file: 20240111_DataDictionary_Ho.docx 4. Missing data codes: NA 5. Specialized formats of other abbreviations used NA ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: 20240111_table5GAHTvsGAS_Ho.cs ----------------------------------------- 1. Number of variables: 23 2. Number of cases/rows: 2995 3. Variable List See codebook file: 20240111_DataDictionary_Ho.docx 4. Missing data codes: NA 5. Specialized formats of other abbreviations used NA ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: 20240111_table6GAHT_Ho.csv ----------------------------------------- 1. Number of variables: 25 2. Number of cases/rows: 2400 3. Variable List See codebook file: 20240111_DataDictionary_Ho.docx 4. Missing data codes: NA 5. Specialized formats of other abbreviations used NA ----------------------------------------- DATA-SPECIFIC INFORMATION FOR: 20240111_table7GAS_Ho.csv ----------------------------------------- 1. Number of variables: 24 2. Number of cases/rows: 1216 3. Variable List See codebook file: 20240111_DataDictionary_Ho.docx 4. Missing data codes: NA 5. Specialized formats of other abbreviations used NA