20% smette gli ormoni: audit del Regno Unito rileva che oltre la metà cita detransizione o rimpianto

Cura dei pazienti transgender: un approccio di miglioramento della qualità nella pratica generale

Studi di coorte e registro Detransizione e rimpianto Ormoni cross-sex

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 dei 20.136 pazienti iscritti (337 ogni 100.000) erano trans o di minoranza di genere: 42 (62%) uomini trans, 22 donne trans e 4 non binari, con un'età mediana di 22 anni.
I problemi di salute mentale erano frequenti nelle cartelle: ansia o depressione nel 76%, autolesionismo nel 54%, disturbo di personalità nel 10% e autismo nel 15%. Il 19% aveva registrazioni di abusi, trascuratezza o violenza nell'infanzia.
I pazienti in attesa di una clinica per il genere del NHS aspettavano in media da 26 mesi. Dei 48 pazienti visti da una clinica, 15 (31%) erano stati visti solo privatamente, e tutti i 16 che si erano rivolti da soli sono andati in cliniche private.
Non esisteva una linea guida per i medici di base con cui confrontarsi, e le istruzioni delle cliniche per il genere britanniche ai medici di base erano in disaccordo tra loro e con le linee guida internazionali su dosi, livelli ormonali target e controlli.
Rispetto a una linea guida specialistica statunitense sugli ormoni, fino a due terzi dei pazienti non aveva effettuato tutti i controlli raccomandati, soprattutto a causa di questi disaccordi.
Dei 41 pazienti che avevano iniziato gli ormoni, 8 (20%) hanno scelto di smettere dopo circa cinque anni in media. Quattro uomini trans avevano note che descrivevano la detransition e una donna trans aveva registrato un rimpianto dopo l'asportazione dei testicoli.
Nessuna delle linee guida esaminate offriva indicazioni sulla detransition, sul rimpianto o sull'assistenza ai pazienti che interrompono il trattamento.

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.

detrans.ai

Summary

Key findings

Abstract

Conclusion