Embedding Patients, Providers, and Community Stakeholders in Research to Improve Transgender Health
transgender, health disparities
Background/Aims: The Institute of Medicine in its 2011 report highlights unique health challenges facing the transgender community. Evaluations of outcomes for medical gender reassignment (more appropriately termed “gender confirmation”) are rare and of low quality. The literature on treatment-related quality of life is limited and little is known about the long-term effects of contra-sex hormones on the risk of age-related chronic conditions. The Study of Transition, Outcomes & Gender (STRONG) research program will provide critical information about morbidity and mortality following gender confirmation treatments. It will also assess the comparative effectiveness of gender confirmation therapies for improving quality of life and alleviating gender dysphoria. The multidisciplinary STRONG research team includes investigators from five institutions. Members of the transgender community and health professionals who care for transgender individuals are an integral part of the team and are directly involved in all aspects of this research program including refinement of research questions, development of methods and content for data collection, and evaluation and dissemination of results.
Methods: We identified the population of transgender individuals enrolled in the Veterans Administration and Kaiser Permanente health plans in Georgia and Northern and Southern California with a combination of validated ICD codes and keyword string searches. To evaluate mortality and morbidity, we will conduct an electronic medical record-based retrospective cohort study. To assess quality of life and other patient reported outcomes, we will conduct an online cross-sectional survey. Online and in-person focus groups with transgender stakeholders will guide data collection and interpretation of results.
Results: ICD codes and keywords identified nearly 15,000 individuals. These preliminary findings indicate the STRONG program will represent the largest cohort of transgender individuals to date and the first such research effort in the United States. Six in-person focus groups have been completed with six more in progress. The study survey has been developed, programmed and pretested via online focus groups.
Discussion: The STRONG research program will help close the health disparities gap for the transgender community through increasing scientific knowledge. The research findings will provide guidance to clinicians and policy makers in the care they provide to this sizeable, but underserved, community.
Quinn VP, Becerra TA, Gillespie T, Hunkeler E, Baird T, Baisch NM, Owen-Smith A, Roblin D, Stephenson R, Tangpricha V, Valentine C, Goodman M. Embedding Patients, Providers, and Community Stakeholders in Research to Improve Transgender Health. J Patient Cent Res Rev 2015;2:114-115. http://dx.doi.org/10.17294/2330-0698.1137