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
- 20,136 पंजीकृत मरीज़ों में से 68 (प्रति 1,00,000 पर 337) ट्रांस या जेंडर-माइनॉरिटी थे: 42 (62%) ट्रांस पुरुष, 22 ट्रांस महिलाएँ और 4 नॉन-बाइनरी, माध्य आयु 22 वर्ष।
- रिकॉर्ड में मानसिक स्वास्थ्य की समस्याएँ आम थीं: 76% में चिंता या अवसाद, 54% में स्वयं को नुकसान पहुँचाना, 10% में व्यक्तित्व विकार और 15% में ऑटिज़्म। 19% के रिकॉर्ड में बचपन में दुर्व्यवहार, उपेक्षा या हिंसा दर्ज थी।
- एनएचएस जेंडर क्लिनिक का इंतज़ार कर रहे मरीज़ औसतन 26 महीने से इंतज़ार कर रहे थे। क्लिनिक द्वारा देखे गए 48 मरीज़ों में से 15 (31%) को केवल निजी तौर पर देखा गया था, और खुद रेफ़र करने वाले सभी 16 निजी क्लिनिकों में गए।
- पारिवारिक डॉक्टरों के लिए मिलान करने हेतु कोई दिशानिर्देश नहीं था, और जीपी को दिए गए यूके जेंडर क्लिनिकों के निर्देश खुराक, लक्षित हार्मोन स्तर और जाँचों के बारे में आपस में और अंतरराष्ट्रीय दिशानिर्देशों से भिन्न थे।
- एक अमेरिकी विशेषज्ञ हार्मोन दिशानिर्देश से मिलान करने पर, दो तिहाई तक मरीज़ों की सभी अनुशंसित जाँचें नहीं हुई थीं, ज़्यादातर इन्हीं असहमतियों के कारण।
- हार्मोन शुरू करने वाले 41 मरीज़ों में से 8 (20%) ने औसतन लगभग पाँच साल बाद बंद करना चुना। चार ट्रांस पुरुषों के नोट्स में डीट्रांजिशन का वर्णन था और एक ट्रांस महिला का वृषण निकलवाने के बाद पछतावा दर्ज था।
- समीक्षा किए गए किसी भी दिशानिर्देश में डीट्रांजिशन, पछतावे या इलाज बंद करने वाले मरीज़ों की देखभाल के बारे में कोई सलाह नहीं थी।
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.