Collecting patient-reported outcomes data in transgender and gender diverse adults seeking surgery: barriers and facilitators from the patient perspective.

Abstract

Purpose: Patient-reported outcome measures (PROMs) evaluate how patients feel and function. While several prior studies have explored barriers and facilitators to integrating PROM data collection in clinical workflows from patient perspectives, research on this topic remains limited for transgender and gender-diverse (TGD) patients seeking gender-affirming surgery. The objective of this qualitative study was to identify barriers and facilitators to collecting PROM data in TGD patients undergoing surgery from the patient perspective.

Methods: Interpretive descriptive approach was used. In-depth semi-structured interviews were conducted with adult TGD patients who were seeking or had undergone gender-affirming surgery at a single academic tertiary center to understand barriers and facilitators to completing PROMs related to their care. All interviews were audio-recorded, transcribed verbatim and analyzed using content analysis.

Results: A total of 14 interviews were completed with participants (median age 32.5 years, range 21-60 years), of whom nine were assigned female at birth and five were assigned male at birth. Eight participants identified as men, five identified as women, and one identified as non-binary. Nine participants received masculinizing and five participants received feminizing procedures. Barriers to completing PROMs were organized into four sub-domains of difficulty engaging with content (e.g., uncomfortable questions, unclear or not inclusive questions), mode of administration (e.g., delivery method, location and environment of completion), concerns about privacy and confidentiality (e.g., mistrust of source, data privacy concerns), and fear of negative impact on care (e.g., fear of losing medical care). Facilitators were organized into four subdomains of altruism (e.g., importance of TGD-specific research, desire to give back to prospective patients), belief in research value (e.g., ensure accurate data, sense of social responsibility), desire to improve medical care and programs (e.g., reduce healthcare-related microaggressions), and access to gender-affirming care.

Conclusion: Adult TGD patients have multiple barriers and facilitators to completing PROMs. Healthcare providers and systems should address barriers to create safe spaces that ensure sustained engagement of TGD individuals in PROM data collection efforts.