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20% Stop Hormones: UK Audit Finds Over Half Cite Detransition or Regret

Care of Transgender Patients: A General Practice Quality Improvement Approach

cohort studydetransitionmedical ethicsgender dysphoriagender-affirming careprimary carequality improvement
Authors
Isabel Boyd, Thomas Hackett, Susan Bewley
Year
2022
Journal
Healthcare

Methodological Limitations

  • Small single-practice sample size (n=68) from a remote, demographically specific area of Southwest England with a nearby university, severely limiting generalizability; authors explicitly state prevalence rates, mental health problems, complications, and detransition rates 'are not generalizable to other populations of patients with Gender Dysphoria'
  • Retrospective electronic health record review only, with no patient contact or verification; authors note 'data collection from the electronic record only' and that for 29% of patients not yet referred or seen in a GIC, 'it was not possible to know just by reviewing their electronic records whether they were still pursuing transition or not'
  • No formal research ethics committee approval obtained; authors self-determined the project was 'quality improvement, not research' through their own interpretation of NHS HRA/MRC decision tools, raising questions about independent ethical oversight for sensitive data collection on a vulnerable population without patient consent
  • Patient consent was explicitly not obtained; authors state 'Patient consent was not obtained due to anonymization of all data,' yet the study collects detailed sensitive information including mental health histories, adverse childhood experiences, and detransition experiences
  • Potential selection bias in identifying patients through Read codes and hormone prescriptions; authors acknowledge 'the prevalence rate of gender dysphoria at this surgery may be an underestimate if patients have not presented to medical services, have undergone social transition alone, or are sourcing hormones off the internet'
  • No appropriate primary care audit standard existed, forcing use of secondary care (Endocrine Society) guidelines that may be inappropriate for primary care context; authors acknowledge this 'constrained the audit cycle' and that using this standard may represent 'the inadequacy of using the blunt tools of a conflicting international guideline'
  • Significant conflict between multiple guidelines used as reference standards; the authors highlight that 'there was considerable variation regarding drug dosing recommendations, target hormone levels, type of monitoring including blood tests, and recommended investigations,' making any 'substandard' determination arbitrary
  • No statistical testing performed; authors state 'No tests for statistical significance were used,' limiting ability to assess whether observed patterns exceed chance
  • Potential observer bias in data extraction despite double collection; two GPs with pre-existing involvement in transgender care at the practice (including one who 'visited the local GIC in 2019') extracted data, with discrepancies resolved through discussion rather than independent arbitration
  • The practice had specific policies that may have influenced patient outcomes and data (e.g., 'bridging hormones will not be prescribed,' requiring GIC follow-up until formal discharge for GP prescribing), yet these restrictive policies are not critically examined as potential sources of harm or selection effects
  • High rates of mental health comorbidities (76% anxiety/depression, 54% deliberate self-harm, 15% autistic spectrum disorder) raise questions about capacity for informed consent and whether adequate mental health assessment preceded hormonal interventions, yet this is not systematically evaluated
  • The detransition rate denominator was potentially manipulated; authors chose 'the number who had started hormone treatment' rather than all identified patients, and excluded patients not contacted, possibly inflating the apparent rate
  • Authors cite and appear to endorse controversial sources including Littman (2019) on 'rapid onset gender dysphoria'—a concept widely criticized as methodologically flawed and potentially harmful—suggesting potential ideological framing
  • The study's framing emphasizes 'regret,' 'detransition,' and 'undesired treatment outcomes' without proportional discussion of benefits of gender-affirming care, and calls for research to investigate 'overdiagnosis, overtreatment, or iatrogenic harm' while not similarly calling for research into under-treatment or access barriers
  • One author (Susan Bewley) has published critical perspectives on transgender healthcare (e.g., 'Sex, gender and medical data' questioning data integrity in transgender populations), yet no explicit disclosure of this prior advocacy orientation is made in conflicts of interest beyond 'no conflict of interest'
  • The 'quality improvement' framing may be a category error given the study's clear research aims (generating 'hypothesis-generating' findings for replication, calling for national policy changes, comparing with existing literature, calculating population prevalence rates); this designation avoids ethical scrutiny while producing generalizable knowledge claims

Key Findings

  • No UK-wide or international primary care guidelines exist for transgender healthcare, and existing guidance from gender identity clinics is often contradictory, making quality care difficult to deliver.
  • Up to two-thirds of transgender patients in the audit did not receive all recommended monitoring standards, largely due to conflicting instructions between different gender identity clinics and international guidelines.
  • A significant portion of patients (20%) stopped hormone therapy, with more than half of those citing regret or detransition experiences—raising concerns about current assessment and treatment approaches.
  • Patients faced long waits for gender identity clinic appointments (averaging 26 months) and high rates of co-existing mental health conditions, including anxiety, depression, self-harm, and autism spectrum disorder.
  • The authors call for urgent development of evidence-based, standardized primary care guidelines with measurable quality standards, and recommend this audit approach be replicated nationally to improve understanding of patient outcomes.

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.

Summary

This paper describes a quality improvement project conducted at a single general practice in England to audit care for transgender and gender minority patients. The study found significant inconsistencies between UK gender identity clinics and international guidelines regarding hormone prescribing and monitoring standards, with up to two-thirds of patients not receiving all recommended monitoring. The authors also identified long waits for specialist care, high rates of mental health comorbidities, and some undesired treatment outcomes including detransition, calling for standardized, evidence-based primary care guidelines to be developed.

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.