Title: Implementing high quality patient-reporting outcome measurement to improve NHS gender identity clinics
Funder: Department of Health and Social Care

Abstract: Background In England, approximately 500,000 people identify as transgender or nonbinary (TG/NB). TG/NB people require complex and individualised gender identity services including hormone therapy, psychotherapy, and gender-affirming surgery. This population faces barriers and discrimination when accessing care. In the NHS, a high level of undesirable treatment variation in gender identity clinics exists, and deficiencies in the quality of care. GENDER-Q is a new patient-reported outcome measure (PROM), developed to rigorous standards, for use with TG/NB people accessing gender identity services. GENDER-Q has applications for cost-effectiveness studies and quality improvement initiatives. Key stakeholders have expressed concerns that the GENDER-Q will 'sit on a shelf', limiting patient benefit, unless an evidence-based implementation strategy is developed for the NHS. Research Question/Aim To explore barriers and facilitators, and develop an evidence-based strategy to implement GENDER-Q in NHS gender identity clinics. Objectives Develop an evidence-based GENDER-Q implementation framework Pilot the implementation strategy, deploying GENDER-Q in an NHS gender identity clinic, and evaluate implementation strategy effectiveness to optimise it for full NHS deploymentMethods Conduct a systematic review following Synthesis without meta-analysis (SWiM) and Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) methodological and reporting guidance addressing: How have PROMs been administered for gender identity services globally? What are the barriers and facilitators influencing PROM adoption for gender identity services? Results will be conceptualised within a CFIR model, a tool used to guide implementation strategies, and built upon in subsequent workstreams. Conduct 2-6 focus groups with TG/NB people and staff at NHS gender identity clinics. Synthesise evidence from workstream (a) and information from research partners to inform an interview guide. Digitally conduct, record, transcribe, and double-code focus groups. Identity barriers and facilitators using thematic analysis and add to the CFIR-based model. Administer GENDER-Q to 250 patients at an NHS gender identity clinic following the developed implementation strategy. Determine effectiveness of the implementation strategy through indicators such as completion rates and patient enablement. Results will inform changes to the GENDER-Q implementation strategy for deployment across English NHS gender identity clinics.Impact The TG/NB community is medically underserved. GENDER-Q implementation will help capture TG/NB patient voices in clinical practice and research, and increase standards in patient-centred care. I will also gain translational research skills, transferrable to other PROMs, aligning with NHS PROM initiatives. Dissemination To scientific community Publications will be disseminated as open access in international high impact journals. Findings will be presented at international meetings on LGBTQ+ health, and outcomes science, with research partners as co-presenters. I will follow GRIPP2 reporting guidelines to report the experience of working with my research partners and submit findings to the NIHR INVOLVE website, and a PPI blog. To public Plain English reports will be co-developed with my research partners and shared with TG/NB charities and community groups. Gender identity clinic staff will be provided these to share with patients. Dissemination will also be through the Q-Portfolio website (www.qportfolio.org), social media, newspaper articles, blog posts, and local LGBTQ+ community events involving my research partners.

Lay abstract: BackgroundIn England, 500,000 people are transgender or nonbinary (TG/NB). TG/NB people often need care at gender identity clinics. This care can include medicines, talking therapy, and surgery. These treatments can change how someone looks, feels, and functions.There are many different treatments for TG/NB people, and we do not know which work best. A big reason for this is that we cannot measure the outcomes of these different treatments to compare them.It is possible to measure how someone looks, feels, and functions, using questionnaires. A questionnaire has recently been made to measure the outcomes of treatments for TG/NB people. It is called GENDER-Q. It is now important that we start using GENDER-Q in the NHS, so that we can improve TG/NB care.AimThe aim of this project is to understand how we should introduce GENDER-Q into NHS gender identity clinics.MethodsFirst, I will summarise all the studies that have looked at introducing questionnaires into gender identity clinics in the past. This is called a systematic review. In the systematic review, I will look for patterns in previous studies that can tell us what will make introducing GENDER-Q easier or more difficult.I will then interview TG/NB people, to ask them what they think would help make GENDER-Q work well in the NHS. I will also interview staff at gender identity clinics, to get their views on what would help them to use GENDER-Q.I will put all of the information I find together using a tool called the Consolidated Framework for Implementation Research. This will help us to understand what needs to be done to introduce the GENDER-Q.Using this understanding, we will start using the GENDER-Q at one NHS gender identity clinic. I will study how many patients complete GENDER-Q. I will also use a survey to see whether patients find the GENDER-Q helpful.With all of this information, I will make a plan to introduce GENDER-Q in NHS gender identity clinics across the UK.Patient and public involvementI have four research partners helping me with my project who have experience with NHS gender identity clinics. These four individuals include: two trans women, one trans man, and one nonbinary individual. My research partners have helped with all stages of this project and application so far. They have also volunteered to help with: finding people to join the study, making posters to invite people to participate in this study, interviewing TG/NB patients, making a plan to introduce GENDER-Q in the NHS, and spreading the findings of this research.I will hold monthly meetings with my research partners online. In these meetings, my research partners will help to plan the next steps of my work. We will write about our experience of working together for the NIHR INVOLVE website, and speak about this at a scientific meeting.DisseminationI will publish this work in scientific journals, and speak about it at scientific meetings. I will also use social media, blogs, newspaper articles, charity newsletters, and reports at gender identity clinics to share results with members of the public.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: DISPUTED AETIOLOGY AND OTHER