Solo il 56% completa il trattamento: Uno studio di una clinica britannica mostra un alto tasso di abbandono e scarsi risultati

Accesso alle cure e frequenza della detransizione in una coorte dimessa da una clinica nazionale britannica per l'identità di genere degli adulti: revisione retrospettiva delle note dei casi

Studi di coorte e registro Detransizione e rimpianto Salute mentale e suicidio

Authors: R. Hall, L. Mitchell, J. Sachdeva
Journal: BJPsych Open
Year: 2021
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

Summary

Clinicians at an English adult gender clinic reviewed the notes of everyone discharged in one year. They wanted to see who got the treatment they wanted, who dropped out, and who went back to living as their birth sex. Just over half completed the planned treatment. 58% got everything they first asked for. Nearly all who wanted hormones got them, but fewer than half who wanted genital surgery had it. About one in five stopped attending and one in five were referred back soon after leaving. People with autism or similar conditions, more childhood hardship, or drug, alcohol or mental health problems during treatment were less likely to get care as planned. Twelve people (6.9%) detransitioned, far more than an earlier UK clinic figure of 0.3%. Because data came only from notes and follow-up was at most 16 months, the detransition figure is probably too low.

Key findings

Dei 175 adulti dimessi in un anno, il 56,1% ha completato il trattamento pianificato e il 58% ha ricevuto tutti i trattamenti richiesti inizialmente.
Il 94% di chi voleva gli ormoni li ha ottenuti, ma solo il 47,7% di chi voleva la chirurgia genitale (56,5% per la chirurgia da maschio a femmina e 25,8% per quella da femmina a maschio).
Il 21,7% ha smesso di frequentare la clinica e il 19,4% è stato rinviato alla clinica entro i 16 mesi di dati, la maggior parte (24 su 34) senza aver terminato il trattamento.
Autismo e condizioni simili (probabilità circa 6 volte maggiori), ogni tipo aggiuntivo di difficoltà infantile (circa 1,5 volte), problemi di droga o alcol durante il trattamento (circa 4 volte) e problemi di salute mentale durante il trattamento (circa 2 volte) erano ciascuno associati al mancato ottenimento delle cure come pianificate.
Dodici persone (6,9%) rientravano nella definizione di detransition dello studio. Per due è stato registrato un rimpianto, e quattro delle dodici sono state poi rinviate alla clinica.
Problemi di salute mentale sono stati registrati durante il trattamento per il 42,9% dei pazienti, e tre persone sono morte per suicidio durante il trattamento.
Gli autori avvertono che i nuovi modelli di servizio, più rapidi, potrebbero non rispondere ai bisogni di un gruppo di pazienti eterogeneo e complesso.

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.

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.

Methodological limitations

Notes only: The study relied only on routine clinic notes with missing information. The authors say there may be important factors they could not look at.
Other conditions likely under-recorded: The clinic does not diagnose mental or physical conditions itself, so other diagnoses depended on records from elsewhere and may be too low.
Clinic's idea of success: 'Getting care' was defined by the clinic's own treatment pathway. The authors admit they do not know if patients would see it the same way, because patient satisfaction is not routinely recorded.
No health results: Changes in mental or physical health could not be measured because of missing data, so the study cannot say whether treatment helped.
Too short to catch detransition: Data stopped 16 months after the last discharge, while detransition is often reported 4 to 8 years after transition and regret after about 10 years. So the 6.9% figure is likely too low.
Detransitions may be missed: Nothing tells the clinic when former patients detransition, so other cases may have been missed. Regret was recorded for only two people, and others may or may not have felt it.
Narrow definition: Detransition meant going back to living in one's birth sex. Six more people with partial transitions, on-and-off hormone use or cancelled surgery did not count, and two who stopped hormones without going back were left out.
Mostly one person checking notes: Only the first 20 of 175 sets of notes were checked by a second person; the other 155 were reviewed by one author alone.
Uncertain numbers: Small groups made the figures very uncertain. For example, autism and similar conditions could mean anywhere from about 2 to 19 times higher odds of not getting care.
Clinicians' choices may play a part: The authors note that the link between mental health or drug problems and not getting care may partly reflect clinicians being reluctant to refer these patients for surgery, which the data cannot separate.
Some treatments left out: Speech and voice therapy was too poorly recorded to include, and talking therapy was not looked at because what was offered changed during the study.
One clinic, one year: One of seven English adult gender clinics over one year of discharges, so patterns may differ elsewhere or later. The three suicides during treatment could not be compared with other clinics.

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Summary

Key findings

Abstract

Conclusion