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An appraisal of current service delivery and future models of care for young people with gender dysphoria

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Abstract

The clinical needs of young people with gender dysphoria (GD) have outpaced the capacity of health services to provide appropriate care. The study aimed to explore the interface of Paediatric Endocrinology and young people with GD, detailing the clinical characteristics and the clinical care provided, in order to inform future service development. Medical records of all young people with GD (n=91, 59 (65%) birth-assigned females and 32 (35%) birth-assigned males) referred to Paediatric Endocrinology during 2011–2019 for puberty suppression were reviewed. Median age at initial assessment was 14.6 years (range 8.8–17.6 years). There was a threefold increase from 2016 (n=22) to 2019 (n=73). Mental health disorders were present in 34 (37%) and autistic spectrum disorder in 21 (23%), while 54 (59%) had at least one comorbidity. Sixty-four (70%) young people fulfilled the criteria for consideration of fertility preservation, with 6 (9%) of them preserving their gametes. Seventy-nine (87%) young people commenced treatment with gonadotrophin-releasing hormone analogue, at a median age of 14.8 years (range 9.7–18.0 years). Six (8%) of those discontinued treatment, following a median duration of 6 months (range 6–18 months). Forty-one young people commenced gender-affirming hormones. One (2%) of those who started gender-affirming hormones discontinued treatment.

Conclusions: We have witnessed increasing numbers of young people with GD attending Paediatric Endocrinology, with an over-representation of comorbidities, necessitating provision of an individualised approach to treatment. Addressing young people’s acceptability of fertility services and ongoing close collaboration between endocrinology and mental health professionals require innovative models of multidisciplinary care.

What is Known:

• A worldwide increase in presentation of gender dysphoria has been mirrored in our service, with majority assigned female at birth and post-pubertal.

• An over-representation of comorbidities exists, notably mental health disorders and autistic spectrum disorder.

What is New:

• Coordination of interprofessional care to meet complex needs, at an individual level, while improving efficiency of working, at a systemic level, can be met by the development of specialist centres.

• The reasons for low uptake of fertility services demand further exploration.

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Availability of data and material

The authors confirm that the data supporting the findings of this study are available within the article.

Code availability

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Abbreviations

ASD:

Autistic spectrum disorder

BMI:

Body mass index

GD:

Gender dysphoria

GnRH:

Gonadotrophin-releasing hormone

MDT:

Multidisciplinary team

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Funding

This research did not receive any specific grant from funding agencies in the public, commercial or not-for-profit sectors.

Author information

Authors and Affiliations

  1. Department of Paediatric Endocrinology, Royal Hospital for Children, 1345 Govan Road, Glasgow, G51 4TF, UK

    Stephanie McCallion, Heather Kyle, M. Guftar Shaikh & Andreas Kyriakou

  2. Young People’s Gender Service, Sandyford Services, 2-6 Sandyford Place, Glasgow, G3 7NB, UK

    Simon Smith & Gordon Wilkinson

Authors
  1. Stephanie McCallion
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  2. Simon Smith
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  3. Heather Kyle
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  4. M. Guftar Shaikh
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  5. Gordon Wilkinson
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  6. Andreas Kyriakou
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Contributions

S.M. contributed to the study conception and design, material preparation, data collection and analysis, wrote the first draft and read and approved the final manuscript. S.S. contributed to the study conception and design and read and approved the final manuscript. H.K contributed to the study conception and design and read and approved the final manuscript. G.S contributed to the study conception and design and read and approved the final manuscript. G.W. contributed to the study conception and design and read and approved the final manuscript. A.K. provided overall supervision of the study from conception to completion, material preparation, data collection and analysis and read and approved the final manuscript.

Corresponding author

Correspondence to Andreas Kyriakou.

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Conflict of interest

The authors declare no competing interests.

Ethical approval

This study did not require ethics approval or informed consent as it was conducted as part of healthcare evaluation of routine clinical practice and according to national guidance. The procedures followed were in accordance with the Helsinki Declaration as revised in 2013.

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Additional information

Communicated by Peter de Winter

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McCallion, S., Smith, S., Kyle, H. et al. An appraisal of current service delivery and future models of care for young people with gender dysphoria. Eur J Pediatr 180, 2969–2976 (2021). https://doi.org/10.1007/s00431-021-04075-2

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  • DOI: https://doi.org/10.1007/s00431-021-04075-2

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