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Cohort profile: Study of Transition, Outcomes and Gender (STRONG) to assess health status of transgender people
  1. Virginia P Quinn1,
  2. Rebecca Nash2,
  3. Enid Hunkeler3,
  4. Richard Contreras1,
  5. Lee Cromwell4,
  6. Tracy A Becerra-Culqui1,
  7. Darios Getahun1,
  8. Shawn Giammattei5,
  9. Timothy L Lash2,
  10. Andrea Millman6,
  11. Brandi Robinson4,
  12. Douglas Roblin7,
  13. Michael J Silverberg6,
  14. Jennifer Slovis8,
  15. Vin Tangpricha9,10,
  16. Dennis Tolsma4,
  17. Cadence Valentine1,
  18. Kevin Ward2,
  19. Savannah Winter4,
  20. Michael Goodman2
  1. 1 Department of Research & Evaluation, Kaiser Permanente Southern California, Pasadena, California, USA
  2. 2 Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, Georgia, USA
  3. 3 Division of Research, Kaiser Permanente Northern California (emerita), Oakland, California, USA
  4. 4 Center for Clinical and Outcomes Research, Kaiser Permanente Georgia, Atlanta, Georgia, USA
  5. 5 The Rockway Institute, Alliant International University, San Francisco, California, USA
  6. 6 Division of Research, Kaiser Permanente Northern California, Oakland, California, USA
  7. 7 School of Public Health, Georgia State University, Atlanta, Georgia, USA
  8. 8 The Permanente Medical Group, Kaiser Permanente Northern California, Oakland, California, USA
  9. 9 Emory University School of Medicine, Atlanta, Georgia, USA
  10. 10 The Atlanta VA Medical Center, Atlanta, Georgia, USA
  1. Correspondence to Dr Michael Goodman; mgoodm2{at}emory.edu

Abstract

Purpose The Study of Transition, Outcomes and Gender (STRONG) was initiated to assess the health status of transgender people in general and following gender-affirming treatments at Kaiser Permanente health plans in Georgia, Northern California and Southern California. The objectives of this communication are to describe methods of cohort ascertainment and data collection and to characterise the study population.

Participants A stepwise methodology involving computerised searches of electronic medical records and free-text validation of eligibility and gender identity was used to identify a cohort of 6456 members with first evidence of transgender status (index date) between 2006 and 2014. The cohort included 3475 (54%) transfeminine (TF), 2892 (45%) transmasculine (TM) and 89 (1%) members whose natal sex and gender identity remained undetermined from the records. The cohort was matched to 127 608 enrollees with no transgender evidence (63 825 women and 63 783 men) on year of birth, race/ethnicity, study site and membership year of the index date. Cohort follow-up extends through the end of 2016.

Findings to date About 58% of TF and 52% of TM cohort members received hormonal therapy at Kaiser Permanente. Chest surgery was more common among TM participants (12% vs 0.3%). The proportions of transgender participants who underwent genital reconstruction surgeries were similar (4%–5%) in the two transgender groups. Results indicate that there are sufficient numbers of events in the TF and TM cohorts to further examine mental health status, cardiovascular events, diabetes, HIV and most common cancers.

Future plans STRONG is well positioned to fill existing knowledge gaps through comparisons of transgender and reference populations and through analyses of health status before and after gender affirmation treatment. Analyses will include incidence of cardiovascular disease, mental health, HIV and diabetes, as well as changes in laboratory-based endpoints (eg, polycythemia and bone density), overall and in relation to gender affirmation therapy.

  • transgender
  • cohort
  • electronic medical records

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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Footnotes

  • Contributors VPQ and MG prepared the original draft of the manuscript. RN conducted data analyses and put together tables and figures. RC and LC were responsible for the preparation and application of data collection programs and ascertainment of study variables. EH, VPQ, DG, MJS and DT led study implementation at participating sites and were actively involved in study planning and design. TAB-C, AM and BR were responsible for the day-to-day project management at each site. DR and TLL provided methodological input on various aspects of study design, including identification of sources of bias and ways of addressing threats to validity. VT and JS provided input on clinical aspects of the study and were responsible for adjudication of study eligibility, gender identity and gender affirmation. KW developed, pilot-tested and supervised the cohort validation and gender identity ascertainment review protocols and programming. SG, CV and SW are members of the Stakeholder Advisory Group who assisted with the development of inclusion and exclusion criteria, assessment of gender identity and interpretation of the data. All authors provided critical review of the manuscript for important intellectual content and approved the final version.

  • Funding This research was supported by the Contract AD-12-11-4532 from the Patient Centered Outcome Research Institute and by the Grant R21HD076387 from the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

  • Competing interests None declared.

  • Ethics approval Emory University IRB.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Once the initial data analyses are complete, we will be open to collaborations with outside investigators as permitted by the IRBs of participating sites as well as by local, state and federal laws and regulations. In particular, we will encourage collaborations with researchers whose expertise is under-represented on our research team. To become a collaborator, a researcher will be required to submit an application, which will undergo both a scientific and an IRB review. In view of the complexity of the database, interested investigators will be asked to form a collaborative arrangement with the STRONG investigators rather than simply receive the data themselves. No additional data are available.

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