Summary

Doctors checked the records of all 68 trans and gender-minority patients at one Cornish family doctor practice to see how their care compared with guidelines. There was no family doctor guideline to check against, and UK gender clinics and international guidelines gave conflicting advice on doses and check-ups. Judged against a US specialist guideline, up to two-thirds had missed some recommended check-ups. Patients waited an average of 26 months for an NHS gender clinic and had high rates of recorded anxiety, depression and self-harm. Of 41 who had started hormones, eight chose to stop, and five of them had notes recording detransition or regret. The authors call for proper family doctor guidance and larger checks like this. With so few patients, one practice and no talking to patients, the figures are a starting point for questions, not national rates.

Key findings

• 등록 환자 20,136명 중 68명(10만 명당 337명)이 트랜스 또는 성소수자였습니다. 트랜스 남성 42명(62%), 트랜스 여성 22명, 논바이너리 4명이었고 중앙값 연령은 22세였습니다.
• 기록에서 정신 건강 문제가 흔했습니다. 불안 또는 우울이 76%, 자해가 54%, 성격장애가 10%, 자폐가 15%였습니다. 19%는 아동기 학대, 방임 또는 폭력이 기록되어 있었습니다.
• NHS 성별 클리닉을 기다리는 환자는 평균 26개월을 기다렸습니다. 클리닉 진료를 받은 48명 중 15명(31%)은 민간에서만 진료받았고, 스스로 의뢰한 16명은 모두 민간 클리닉에 갔습니다.
• 가정의가 대조해 볼 지침이 없었고, 영국 성별 클리닉이 일반의에게 주는 지시는 서로, 그리고 용량, 목표 호르몬 수치, 검진에 관한 국제 지침과 일치하지 않았습니다.
• 미국 전문 호르몬 지침과 비교하면 최대 3분의 2의 환자가 권고된 검진을 모두 받지 못했는데, 대부분 이런 불일치 때문이었습니다.
• 호르몬을 시작한 41명 중 8명(20%)이 평균 약 5년 후 중단을 선택했습니다. 트랜스 남성 4명은 기록에 디트랜지션이 적혀 있었고 트랜스 여성 1명은 고환 제거 후 후회가 기록되어 있었습니다.
• 검토된 어떤 지침도 디트랜지션, 후회, 치료를 중단한 환자의 진료에 관한 조언을 주지 않았습니다.

Abstract

Primary care must ensure high quality lifelong care is offered to trans and gender minority patients who are known to have poor health and adverse healthcare experiences. This quality improvement project aimed to interrogate and audit the data of trans and gender minority patients in one primary care population in England. A new data collection instrument was created examining pathways of care, assessments and interventions undertaken, monitoring, and complications. General practitioners identified a sample from the patient population and then performed an audit to examine against an established standard of care. No appropriate primary care audit standard was found. There was inconsistency between multiple UK gender identity clinics' (GIC) individual recommended schedules of care and between specialty guidelines. Using an international, secondary care, evidence- informed guideline, it appeared that up to two-thirds of patients did not receive all recommended monitoring standards, largely due to inconsistencies between GIC and international guidance. It is imperative that an evidence-based primary care guideline is devised alongside measurable standards. Given the findings of long waits, high rates of medical complexity, and some undesired treatment outcomes (including a fifth of patients stopping hormones of whom more than half cited regret or detransition experiences), this small but population-based quality improvement approach should be replicated and expanded upon at scale.

Conclusion

These findings complement secondary care-generated knowledge and suggest room for improvement. Gender minority/trans people will be better served by evidence-based primary care guidance, including monitoring and communication standards. Existing guidance is contradictory. Given the findings of long waits for GIC assessment, and some unwanted outcomes and complications (including detransition), this small but hypothesis-generating primary care-focused, population-based, quality improvement approach should be replicated and expanded upon at scale.