20 % arrêtent les hormones : un audit britannique révèle que plus de la moitié invoquent une détransition ou des regrets

Soins aux patients transgenres : une approche d'amélioration de la qualité en médecine générale

Études de cohorte & registres Détransition & regret Hormones croisées

Authors: Isabel Boyd, Thomas Hackett, Susan Bewley
Journal: Healthcare
Year: 2022
Source: www.mdpi.com/2227-9032/10/1/121

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 des 20 136 patients inscrits (337 pour 100 000) étaient trans ou de minorité de genre : 42 (62 %) hommes trans, 22 femmes trans et 4 non binaires, avec un âge médian de 22 ans.
Les problèmes de santé mentale étaient courants dans les dossiers : anxiété ou dépression chez 76 %, automutilation chez 54 %, trouble de la personnalité chez 10 % et autisme chez 15 %. 19 % avaient des antécédents consignés de maltraitance, négligence ou violence dans l'enfance.
Les patients en attente d'une clinique du genre du NHS avaient attendu 26 mois en moyenne. Sur 48 patients vus par une clinique, 15 (31 %) n'avaient été vus qu'en privé, et les 16 qui s'étaient adressés eux-mêmes sont allés dans des cliniques privées.
Il n'existait aucune recommandation de référence pour les médecins généralistes, et les instructions des cliniques du genre britanniques aux généralistes se contredisaient entre elles et avec les recommandations internationales sur les doses, les taux hormonaux cibles et les examens de suivi.
Comparé à une recommandation hormonale américaine de spécialistes, jusqu'à deux tiers des patients n'avaient pas eu tous les examens de suivi recommandés, surtout à cause de ces désaccords.
Sur 41 patients ayant commencé les hormones, 8 (20 %) ont choisi d'arrêter après environ cinq ans en moyenne. Quatre hommes trans avaient des notes décrivant une détransition et une femme trans avait des regrets consignés après l'ablation des testicules.
Aucune des recommandations examinées ne donnait de conseil sur la détransition, le regret ou la prise en charge des patients qui arrêtent le traitement.

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.

Methodological limitations

Very small numbers: The detransition and regret findings rest on 8 people who stopped out of 41 who started, so a single person changes the rate by about 2.5 percentage points and the true figure could be quite different. No statistical testing was done.
One practice in one area: A single training practice in a mixed rural and town area of Cornwall near a university. The authors say its rates of trans patients, mental illness, complications and detransition cannot be applied to other places.
Notes only: Data came only from electronic records with no contact with patients. Reasons for stopping, current identity and wellbeing were guessed from brief notes, and for the 29% not yet seen by a gender clinic it was unknown whether they still wanted to transition.
Some patients may be missed: Patients were found through diagnosis codes and hormone prescriptions, so people who only socially transitioned, got hormones themselves or never told the practice may be missing, as the authors admit.
Simple rate: The 20% stopping figure counts only people who chose to stop, out of those who started. It does not allow for how long people had been on treatment, which ranged from 17 months to 10 years.
Borrowed standard: With no family doctor guideline available, care was judged against a specialist guideline that UK clinics did not follow. So 'missed check-ups' partly reflects guidelines disagreeing rather than GP failings.
Mental health histories not checked: Diagnoses and childhood hardships were taken from notes without being confirmed, and whether they came before or after transition was not looked at.
No comparison group: Without comparing to other patients of similar age and sex at the practice, rates of mental illness, self-harm and complications cannot be compared with anyone else.
Checked by insiders: The two people extracting data were GPs in the practice's own local network, which had its own trans care lead and prescribing policies. Each record was checked twice, but disagreements were settled between them rather than by an outsider.
No ethics committee review: The project was classed as a quality check, so no research ethics approval or patient consent was sought, even though the findings are presented as research to generate questions.
No follow-up check: The practice did not re-check care after making changes. The authors say the lack of a suitable standard limited this, so the effect of any improvements is unknown.

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Summary

Key findings

Abstract

Conclusion