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

• 68 نفر از 20,136 بیمار ثبت‌نام‌شده (337 در هر 100,000) ترنس یا اقلیت جنسیتی بودند: 42 نفر (62%) مرد ترنس، 22 زن ترنس و 4 غیرباینری، با میانهٔ سن 22.
• مشکلات روانی در پرونده‌ها رایج بود: اضطراب یا افسردگی در 76%، آسیب به خود در 54%، اختلال شخصیت در 10% و اوتیسم در 15%. در 19% سوءاستفاده، غفلت یا خشونت دوران کودکی ثبت شده بود.
• بیمارانی که منتظر کلینیک جنسیت NHS بودند به‌طور میانگین 26 ماه منتظر مانده بودند. از 48 بیمار که کلینیک دیده بودند، 15 نفر (31%) فقط به‌صورت خصوصی دیده شده بودند و هر 16 نفری که خودشان ارجاع داده بودند به کلینیک‌های خصوصی رفتند.
• رهنمودی برای پزشکان خانواده وجود نداشت که کارشان را با آن بسنجند، و دستورهای کلینیک‌های جنسیت بریتانیا به پزشکان عمومی با یکدیگر و با رهنمودهای بین‌المللی دربارهٔ دوزها، سطح هدف هورمون و معاینه‌ها اختلاف داشت.
• در مقایسه با یک رهنمود هورمونی تخصصی آمریکایی، تا دوسوم بیماران همهٔ معاینه‌های توصیه‌شده را انجام نداده بودند، بیشتر به‌دلیل همین اختلاف‌ها.
• از 41 بیماری که هورمون را شروع کردند، 8 نفر (20%) پس از حدود پنج سال به‌طور میانگین تصمیم به قطع گرفتند. چهار مرد ترنس یادداشت‌هایی دربارهٔ دترنزیشن داشتند و یک زن ترنس پس از برداشتن بیضه‌ها پشیمانی ثبت‌شده داشت.
• هیچ‌یک از رهنمودهای بررسی‌شده توصیه‌ای دربارهٔ دترنزیشن، پشیمانی یا مراقبت از بیمارانی که درمان را قطع می‌کنند نداشت.

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.