Navigating information in gender-affirming mastectomy: Voices from transgender and gender-diverse individuals and healthcare providers

Introduction Preference-sensitive decision-making regarding gender-affirming mastectomy requires high-quality, accessible information. Insight into how surgical information practices are experienced, and which elements are essential to support preference-sensitive decision-making remains limited.Aim To explore how information is experienced and navigated within gender-affirming mastectomy care, and to identify informational elements required to support informed, preference-sensitive decision-making.Materials and methods This qualitative study used semi-structured interviews and focus groups with trans and gender diverse (TGD) individuals (n = 11) and healthcare providers (n = 18) involved in gender-affirming mastectomy care. TGD participants were purposively sampled across different stages of the care pathway. Healthcare providers included plastic surgeons, physician assistants, and psychologists. Participants were asked to reflect on current information practices and informational needs. An inductive thematic analysis was conducted, using iterative coding.Results Three overarching themes were identified using 1,000 codes. First, Information Content encompassed gaps and needs relating to information about surgical procedures, including logistics, choices, and outcomes. Second, Fragmentation described the misalignment between information-seeking behavior and information provision and a lack of coordination in this regard within the multidisciplinary care pathway. Third, Inclusivity highlighted gaps in tailoring information to varying literacy levels and neurodivergent needs, as well as limited representation of diverse bodies and identities, particularly for people of color and individuals with larger body types.Discussion Current information provision in gender-affirming mastectomy remains too generic, fragmented, and insufficiently inclusive to consistently support informed preference-sensitive decision-making. Information should be offered earlier and independent of pathway timing, explicit about preference-sensitive tradeoffs, coordinated through clearly owned responsibility, and designed by default for diverse literacy, neurotype, and identity. These principles offer a foundation for developing an inclusive decision-support framework for gender-affirming mastectomy.