Solo el 56% completa el tratamiento: Estudio de una clínica del Reino Unido muestra alta deserción y malos resultados

Acceso a la atención y frecuencia de detransición en una cohorte dada de alta por una clínica nacional de identidad de género para adultos en el Reino Unido: revisión retrospectiva de notas de casos

Estudios de cohorte y registros Destransición y arrepentimiento Salud mental y 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

De 175 adultos dados de alta en un año, el 56,1 % completó el tratamiento previsto y el 58 % recibió todos los tratamientos que pidió al principio.
El 94 % de quienes querían hormonas las recibió, pero solo el 47,7 % de quienes querían cirugía genital (56,5 % en la cirugía de hombre a mujer y 25,8 % en la de mujer a hombre).
El 21,7 % dejó de acudir a la clínica y el 19,4 % fue derivado de nuevo en los 16 meses de datos, la mayoría (24 de 34) sin haber terminado el tratamiento.
El autismo y afecciones similares (unas 6 veces más probabilidades), cada tipo adicional de adversidad en la infancia (unas 1,5 veces), los problemas con drogas o alcohol durante el tratamiento (unas 4 veces) y los problemas de salud mental durante el tratamiento (unas 2 veces) se asociaron cada uno con no recibir la atención prevista.
Doce personas (6,9 %) cumplían la definición de detransición del estudio. En dos se registró arrepentimiento, y cuatro de las doce fueron derivadas de nuevo a la clínica más tarde.
Se registraron problemas de salud mental durante el tratamiento en el 42,9 % de los pacientes, y tres personas murieron por suicidio mientras estaban en tratamiento.
Los autores advierten de que los nuevos modelos de servicio, más rápidos, pueden no satisfacer las necesidades de un grupo de pacientes variado y complejo.

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