Transgender Treatment Ascertained from Electronic Medical Records and Survey Results: An Analysis of Disagreement Open Access

Gerth, Joseph (Spring 2018)

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Background: Transgender individuals often seek gender confirmation treatment, which includes hormone therapy and/or surgery, to better align their physical characteristics with their identity. The long-term effects of these therapies remain unclear and are subject to increasing research interest. Proper assessment of treatment receipt is critical to understanding the outcomes of these interventions.


Methods: The “Study of Transition, Outcomes & Gender (STRONG)” is an electronic medical records (EMR) based cohort of transgender individuals identified from three Kaiser Permanente health plans located in Georgia, Northern California, and Southern California.   As subset of cohort members were asked to complete a survey. Treatment information from the EMR was compared to their survey responses to assess the extent of agreement regarding transmasculine(TM)/transfeminine (TF) status, hormone therapy, top surgery, and bottom surgery. A logistic regression model was used to assess how certain demographic characteristics were related to disagreement between data sources.  To account for non-response these models were weighted based on inverse probability of participation.


Results: Agreement was high between EMR and survey information regarding TM/TF status (99%) and hormone therapy status (97%). Lower agreement was observed for top surgery (72%) and bottom surgery (83%). Using survey responses as the “gold standard”, both top and bottom had reasonably high specificity (95% and 93%, respectively), but the sensitivity of EMR-based treatment history was low (49% and 68%, respectively). The likelihood of disagreement between EMR and survey data varied across different groups of study participants.  For top surgery the disagreement was more evident among TM while history of bottom surgery was more discordant among TF subjects. In addition, the disagreement with respect to both types of surgery was more evident among older study cohort members than in their younger counterparts.


Discussion: Our findings offer assurance that EMR-based data are less likely to misclassify cohort participants with respect to their TM/TF status or hormone therapy receipt.  However, EMR data may not capture the complete history of gender affirmation surgeries. This information is useful in future study of outcomes related to gender confirmation therapy.


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