Only 56% Complete Treatment: UK Clinic Study Shows High Dropout and Poor Outcomes

Access to care and frequency of detransition among a cohort discharged by a UK national adult gender identity clinic: retrospective case-note review

mental healthcohort studydetransitiontraumagender dysphoriagender-affirming careadolescent

Authors: R. Hall, L. Mitchell, J. Sachdeva
Year: 2021
Journal: BJPsych Open
Source: www.cambridge.org/core/journals/bjpsych-open/article/access-to-care-and-frequency-of-detransition-among-a-cohort-discharged-by-a-uk-national-adult-gender-identity-clinic-retrospective-casenote-review/3F5AC1315A49813922AAD76D9E28F5CB

Methodological Limitations

The study relied solely on clinical notes with missing information, and the authors explicitly state that 'the logistic regression relied on routinely collected information; there may be important variables which we could not examine.'
The GIC does not diagnose concurrent mental or physical health issues itself, so the study relied on documentation of diagnoses made elsewhere, meaning background characteristics data 'may be underestimates.'
The primary outcome was defined according to the service model, and the authors acknowledge that 'whether this is the case from a service user perspective remains unknown' - patient satisfaction levels might be similar irrespective of group, but 'these data are not routinely collected.'
The study could not quantify outcomes for service users in terms of mental and physical health improvements compared with baseline 'owing to a lack of data,' and notes that 'at present there is no standardised approach to measure and record such outcomes.'
Data collection occurred for only 16 months after the most recent discharge, which may have led to underestimation of detransitioning frequency, with the authors noting evidence that people detransition on average 4-8 years after completion of transition, with regret expressed after 10 years.
There is no automatic mechanism to inform GICs of service users who subsequently detransition, so 'other instances may have been missed' - the detransition rate of 6.9% is likely an underestimate.
The study gleaned 'only a limited understanding of those who detransitioned, owing to our reliance on notes,' and regret was specifically documented in only two cases but 'may or may not have been experienced by others too.'
The first 20 sets of notes were independently reviewed by two authors, but the remaining 155 sets of notes were extracted by only one author (R.E.H.), introducing potential for inconsistent data extraction.
Information on speech and language therapy was 'too sparsely documented to include,' and psychotherapy was 'not collated as a distinct intervention, as provision changed during the period studied,' meaning two potentially relevant interventions were excluded from analysis.
The study had small numbers for some subgroups, leading to wide confidence intervals in the multivariate analysis (e.g., neurodevelopmental disorders OR 5.7, 95% CI 1.7-19; substance misuse OR 4.3, 95% CI 1.1-17.6), indicating imprecise estimates.
Three completed suicides occurred during treatment but the study could not determine whether these rates were comparable with other UK clinics due to lack of data.
The authors acknowledge that 'the association we observed between mental health issues and substance misuse during transition and not accessing care is mediated by clinician bias in reluctance to refer these service users for surgery; this warrants further exploration' - suggesting an unexamined confounding variable.
The study compares its GRS rates unfavorably to older studies but notes multiple alternative explanations (changing demographics, differing diagnostic rates, inaccurately elicited treatment goals) without being able to distinguish between them.
Patient and public involvement was limited to discussion with 'a future service user' (singular) in the capacity of a lived experience consultant, which is minimal involvement for a study about a highly contested and sensitive topic.

Key Findings

Only 56% of patients completed their planned treatment pathway, with 22% disengaging from care entirely and 19% being re-referred shortly after discharge.
Hormone therapy was accessed by 94% of those who sought it, but gender reassignment surgery rates were much lower—57% for feminizing and just 26% for masculinizing procedures.
Four factors were independently linked to worse outcomes: neurodevelopmental disorders, adverse childhood experiences, substance misuse during treatment, and mental health concerns during treatment.
The detransition rate of 6.9% is notably higher than previously reported UK figures, though the authors note this may still be an underestimate due to limited follow-up time.
The study raises concerns about implementing streamlined care models uniformly, given the significant heterogeneity and complex needs of patients accessing gender identity services.

Abstract

Background: UK adult gender identity clinics (GICs) are implementing a new streamlined service model. However, there is minimal evidence from these services underpinning this. It is also unknown how many service users subsequently 'detransition'. Aims: To describe service users' access to care and patterns of service use, specifically, interventions accessed, reasons for discharge and re-referrals; to identify factors associated with access; and to quantify 'detransitioning'. Method: A retrospective case-note review was performed as a service evaluation for 175 service users consecutively discharged by a tertiary National Health Service adult GIC between 1 September 2017 and 31 August 2018. Descriptive statistics were used for rates of accessing interventions sought, reasons for discharge, re-referral and frequency of detransitioning. Using multivariate analysis, we sought associations between several variables and 'accessing care' or 'other outcome'. Results: The treatment pathway was completed by 56.1%. All interventions initially sought were accessed by 58%; 94% accessed hormones but only 47.7% accessed gender reassignment surgery; 21.7% disengaged; and 19.4% were re-referred. Multivariate analysis identified coexisting neurodevelopmental disorders (odds ratio [OR] = 5.7, 95% CI = 1.7-19), previous adverse childhood experiences (ACEs) per reported ACE (OR = 1.5, 95% CI = 1.1-1.9), substance misuse during treatment (OR = 4.3, 95% CI = 1.1-17.6) and mental health concerns during treatment (OR = 2.2, 95% CI 1.1-4.4) as independently associated with accessing care. Twelve people (6.9%) met our case definition of detransitioning. Conclusions: Service users may have unmet needs. Neurodevelopmental disorders or ACEs suggest complexity requiring consideration during the assessment process. Managing mental ill health and substance misuse during treatment needs optimising. Detransitioning might be more frequent than previously reported.

Summary

This retrospective study of 175 patients discharged from a UK gender identity clinic found that only 58% accessed all interventions they initially sought, with neurodevelopmental disorders, adverse childhood experiences, substance misuse, and mental health concerns during treatment being associated with poorer access to care. The study also found that 6.9% of patients detransitioned (returned to their original gender role), a rate notably higher than previously reported, and that nearly 20% were re-referred shortly after discharge, suggesting significant unmet needs within gender identity services.

Conclusion

Service users may have unmet needs. Neurodevelopmental disorders or ACEs suggest complexity requiring consideration during the assessment process. Managing mental ill health and substance misuse during treatment needs optimising. Detransitioning might be more frequent than previously reported.