Practical guide to implementing patient-reported outcome measures in gender-affirming care: evaluating acceptability, appropriateness and feasibility

Objective Assess acceptability, appropriateness and feasibility of the Practical Guide to Implementing patient-reported outcome measures (PROMs) in Gender-Affirming Care (PG-PROM-GAC) from a sample of patients and healthcare professionals. Design Cross-sectional study conducted August–October 2023. Setting Participants were recruited from a National Health Service (NHS) gender clinic. Participants Patient participants seeking care and healthcare professionals working at an NHS gender clinic were eligible for participation. The PG-PROM-GAC was sent to participants via email for review. Outcome measures Three validated tools to measure acceptability, appropriateness and feasibility were administered: the acceptability of intervention measure (AIM), intervention appropriateness measure (IAM) and feasibility of intervention measure (FIM). The percentage of participants indicating agreement or disagreement with items on the AIM, IAM and FIM was calculated. Results A total of 132 transgender and gender diverse (TGD) patients (mean age, SD: 33, 14) and 13 gender-affirming healthcare professionals (mean age, SD: 43, 11) completed the AIM, IAM and FIM, representing a range of gender identities. The cumulative percentage of patients indicating agree or strongly agree on the AIM, IAM and FIM for the patient-relevant strategies in the PG-PROM-GAC was over 50% for each item. The cumulative percentage of patients indicating disagree or strongly disagree on the AIM, IAM and FIM for the PG-PROM-GAC was less than 20% for each item. The cumulative percentage of healthcare professionals indicating agree or strongly agree on the AIM, IAM and FIM for the healthcare professional-relevant strategies in the PG-PROM-GAC was over 38% for each item. The cumulative percentage of healthcare professionals indicating disagree or strongly disagree on the AIM, IAM and FIM for the PG-PROM-GAC was less than 15% for each item. Conclusions Gender-affirming healthcare professionals and TGD patients find the PG-PROM-GAC acceptable, appropriate and feasible. The PG-PROM-GAC is ready-to-use for clinicians, policy-makers and researchers committed to service improvement for gender-affirming care.


Introduction to PROMs
Patient-reported outcome measures (PROMs) are questionnaires that measure how people feel and function [6].They can be used to measure health outcomes so that healthcare professionals can better understand the patient perspective as it relates to their health.The benefits of PROMs are extensively researched and include: Improving communication between patients and healthcare professionals [7] Improving patient satisfaction [8] Improving health outcomes [9,10] For gender services, PROMs can guide shared decision-making, challenge bias where appropriate, track quality of care, and provide data to enable service improvements [1].PROM data can also help compare between treatments and show which treatments are most effective [11].This data can be used to show the need for additional funding for necessary services that improve patient outcomes.
Over 200 PROMs for adult gender-affirming care [1], and 38 PROMs for paediatric gender-affirming care [12] have been identified.This guide can be used to help implement a PROM most suitable for your setting.A few examples of PROMs include: the Gender Congruence and Life Satisfaction Scale (GCLS) [13], and the Utrecht Gender Dysphoria Scale (UGDS) [14].

Patient-Relevant Strategies
Provide accessible educational material (mixture of videos, animations, written information) which explains: what PROMs are, why they are being implemented, how they may benefit patient care, how they work, how data will be handled, and that care access will not be jeopardised with PROM completion.Care should be taken to ensure material is not too onerous.Coproduce educational material with service users to help with accessibility and increase engagement.

Provide contact information of organisations or key individuals who may be able to support patients to complete PROMs (i.e., Citizens Advice, Support Worker, Assistant Psychologist).
Ask patients for feedback on a regular basis (e.g., annually) for how PROM implementation is going and suggestions for improvement.Seek permission from patients prior to asking for feedback on PROM implementation.Where possible, gather input from patients at service evaluations in conjunction with PROM implementation feedback.Ensure patient feedback is from diverse populations.
Confirm when patients would prefer to complete PROMs (i.e., before a clinic appointment, after a clinic appointment, in between appointments), and where they would prefer to complete PROMs (i.e., at home, in clinic) prior to having a PROM sent to them.Also confirm how patients would like to receive communication about completing PROMs (such as reminders) (i.e., through email, text message, post).
BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) Ensure that peer support staff are available to contact if PROM completion is difficult.Also consider whether and how patients can access a peer support worker who is similar to the patient (i.e., age, neurodivergent, ethnicity).This may mean some of the support is provided remotely or more ad-hoc and the acceptability of this should be ascertained and led by patients.If the PROM distress falls beyond the scope of peer support services, work in collaboration with third sector organisations like LGBT switchboard or crisis mental health services.
Potentially implement a parallel PROM implementation system for monitoring waiting list patients and outcomes resulting from waiting lists.

Conduct an information session specifically about PROM completion and data use so patients can speak/air their views with clinicians/assistants/peer support about any questions or misgivings.
Set up multi-factor authentication set up for electronic PROMs so that patients can securely and remotely access their PROM and so that it cannot be accessed by unintended recipients.
Provide a dedicated and private space to complete the PROM in clinic as an option.

Confirm who patients would like PROM data to be shared with. Allow patients to choose levels of data usage and sharing as part of the consent process (i.e., 'I do not consent for you to use my data for research use, but you can use it for service level feedback and for my clinician to see if I am in distress').
BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s) BMJ Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance

Organise staff meetings aimed at identifying a PROM to implement which is not burdensome (i.e., not too lengthy or complex to score, has a computerised adaptive test option) and formalising the PROM implementation plan. Also, organise a meeting with service users to identify measures which would be acceptable to them. Develop a formal implementation blueprint for the clinic on PROM implementation. Involve local patient advisory groups as points of contact to provide support on PROM implementation. This could include tailoring PROM implementation strategies to your clinic in partnership with service users. Involve local organisations as points of support to aid PROM implementation (e.g., Citizens Advice as a point of support to patients who may need help filling in a form, ethnically diverse organisations). Survey local organisations to see if they would be willing to be involved and if they have the knowledge required to support a gender-affirming care PROM implementation effort. Inform higher-level leaders (i.e., senior managers) of the PROM implementation strategy for higher-level buy in. Assess/confirm patient accessibility needs to adapt PROMs as needed (i.e., large-print, high contrast versions, providing overlays, different languages).
Publishing Group Limited (BMJ) disclaims all liability and responsibility arising from any reliance Supplemental material placed on this supplemental material which has been supplied by the author(s)