Development & Implementation of an Interactive Digital Decision Aid on Gender Affirming Treatment in Youth
by Bianca Salvetti
Medical Devices & Digital Health
Nearly 10% of high school students in the United States identify as transgender or gender diverse (TGD) identity or has a gender identity different from their assigned sex at birth. In California, nearly 800,000 youth identify as TGD. TGD youth face many healthcare disparities, such as an increased risk of suicide, homicide, and victimization within healthcare settings. While the prevalence of TGD identity is highest among youth of color, TGD youth of color are more likely to report stigma and discrimination in all settings, leading to inequities in accessing gender-affirming care. These disparities can be mitigated by early access to gender-affirming treatment (GAT) and parental support. However, youth and their caregivers often have a misalignment in their goals and timeline for treatment, leading to delays in care.
Many TGD youth and caregivers seek information online, however, this information may be inaccurate or difficult to understand. Transphobia can negatively impact educational attainment and health literacy in TGD youth. People with low literacy levels may have difficulty accessing, reading, understanding, and evaluating online resources that are typically written at or above a 12th-grade reading level. Misinformation or misinterpretation of online data may mislead caregivers, delay care, and potentially invalidate their child’s identity.
Increasing knowledge among caregivers of TGD youth may increase age-appropriate access to care. Access to peer-concordant hormone therapy has been shown to improve several areas of well-being, including the benefit of self-disclosure. An interactive decision aid (DA), that provides balanced information on treatment benefits, risks, and potential long-term effects, is an innovative way to provide TGD youth and caregivers with educational support to enhance decision-making (DM). An interactive DA can be used to address information overload by layering information from simple details to more complex concepts. An interactive format is well-suited for youth and various learning methods.
A pilot study was conducted utilizing a novel, low literacy level, web-based DA on GAT for patients and caregivers to help with DM by improving knowledge and decreasing decisional conflict (DC) after the intake appointment. The pilot study found that the project was feasible and beneficial to DM, with 80% of participants indicating that the DA included information that helped them make a decision regarding treatment. However, many participants asked for enhanced visual graphics and better formatting to be able to utilize the DA on a variety of devices. The study also found that overall baseline knowledge scores were high and DC scores were low, highlighting that provider GAT counseling during the intake appointment may be adequate in enhancing knowledge and decreasing DC. The current project aims to redesign the intervention to be more interactive and useful across platforms. The project will be implemented prior to having a provider intake appointment as our clinic often has a 3-4m wait list, allowing for participants to review the information and come to the intake appointment as a partner in the DM process.