Implementation of patient-reported outcome measurement in gender-affirming care

Introduction: Gender-affirming care includes psychosocial, hormonal, and/or surgical care to help an individual feel more comfortable with their gender identity and reduce gender dysphoria. Gender-affirming care has seen a higher rate of referrals than any other NHS service over the past five years. However, reports outline concerns with variation in NHS gender-affirming care and issues with gender-affirming care quality. Several national and international bodies call for evidence-based implementation of patient- reported outcome measures (PROMs) in gender-affirming care for improved monitoring of patient health outcomes, satisfaction, and providing data to drive clinical and health service-level improvements. The aim of this thesis is to develop and deploy strategies to implement PROMs in gender-affirming care to improve patient-centeredness of care, measurement of outcomes relevant to patients, and help to align care with international clinical guidance which state patient needs must be comprehensively measured to offer high-quality gender-affirming care. Methods: This thesis is a mixed-methods piece of research, and comprises seven experimental chapters. In the first experimental chapter, a systematic review is conducted on PROM implementation worldwide for gender- affirming care and synthesising previously reported barriers and enablers to implementation. The second and third studies conduct focus groups with patients and multidisciplinary healthcare professionals on the barriers and enablers to implementing PROMs in gender-affirming care. The fourth experimental chapter conducts an implementation study developing PROM implementation strategies for gender-affirming care based on data from the previous studies and with input from key stakeholders. The fifth experimental chapter conducts a cross-sectional study with patients and healthcare professionals assessing acceptability, feasibility, and appropriateness of the implementation strategies previously developed. The sixth experimental chapter conducts an open-ended survey to collect qualitative feedback on the developed implementation strategies. The final experimental chapter deploys implementation strategies in a real-world setting and assesses their fidelity qualitatively, and their effectiveness quantitatively on PROM completion rates. Results: The systematic review comprised 286 international articles with 85,395 patients, identifying key barriers with PROM implementation including evidence behind PROM used, engaging patients, and PROM complexity. The focus groups represented 14 patients and 10 multidisciplinary healthcare professionals and identified key considerations for PROM implementation include patient mistrust with PROMs, accessibility concerns, burden, lack of communication around PROMs, and time and financial costs with implementation. Data from the systematic review and focus groups were used to develop a guide comprising of strategies to implement PROMs, the Practical Guide to Implementing PROMs in Gender-Affirming Care (PG-PROM-GAC). A total of 132 patients and 13 healthcare professionals rated the PG-PROM-GAC as acceptable, appropriate, and feasible. A total of 64 patients and 9 healthcare professionals qualitatively identified support for the PG-PROM-GAC, and identified suggestions for improvement on its presentation, and considerations for impact of PROM selection and gender clinic resources. Data were used to iterate the PG-PROM-GAC and deploy it at a gender clinic. Participants qualitatively discussed sufficient fidelity of deployed implementation strategies. However, response rates decreased as the burden of reviewing additional amounts of implementation strategy material increased. Conclusion: This thesis presents key considerations which might help guide PROM implementation for gender-affirming care and other aspects of NHS care. However, the effectiveness of such approaches needs further evaluation before wholesale endorsement and/or further applications of these methods is adopted. This thesis has implications for: improving patient-centred care through identifying key concepts relevant for gender-affirming care PROM implementation; policy-making through providing insights relevant to underpin future local and national PROM initiatives; and improving care quality through identifying how to support healthcare professionals and patients with outcome measure implementation initiatives.