Priorities for data collection through a prospective cohort study on gender-affirming hormone therapy in Aotearoa New Zealand: community and clinical perspectives

Rona Carroll; Sally B. Rose; Alex Ker; Michaela A. Pettie; Susan M. Garrett

doi:10.1071/HC23170

RESEARCH ARTICLE (Open Access)

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Priorities for data collection through a prospective cohort study on gender-affirming hormone therapy in Aotearoa New Zealand: community and clinical perspectives

Rona Carroll

¹ ^* , Sally B. Rose

¹ , Alex Ker ¹ , Michaela A. Pettie ² , Susan M. Garrett

¹

+ Author Affiliations

- Author Affiliations

¹ Department of Primary Health Care and General Practice, University of Otago, Te Whare Wānanga o Otāgo ki Te Whanganui-a-Tara, PO Box 7343, Wellington South, Wellington 6242, New Zealand.

² Department of Public Health, University of Otago, Te Whare Wānanga o Otāgo ki Te Whanganui-a-Tara, Wellington 6242, New Zealand.

^* Correspondence to: rona.carroll@otago.ac.nz

Handling Editor: Felicity Goodyear-Smith

Journal of Primary Health Care https://doi.org/10.1071/HC23170

Submitted: 7 December 2023 Accepted: 20 January 2024 Published: 19 February 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of The Royal New Zealand College of General Practitioners. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Introduction

Gender affirming hormone therapy (GAHT) is an important aspect of health care for many transgender and non-binary (TNB) people, but little is known about the long-term outcomes for TNB people in Aotearoa New Zealand (NZ). Pathways to access GAHT are shifting from secondary care towards primary care, so this is an opportune time to commence local research on long-term health and wellbeing outcomes for people initiating GAHT.

Aim

This paper aims to report on the key findings from four meetings held to inform the design of a prospective cohort study to follow the journey of people initiating GAHT in primary and secondary care settings in NZ.

Methods

We worked with a community advisory group of six TNB young people and sought input from 14 health care providers involved in the care of TNB people initiating GAHT (GPs, secondary care doctors, and mental health providers). Semi-structured interview schedules were used to guide discussions. Template analysis was used to initially code data based on themes identified from the interview schedule and new themes from discussions were added.

Results

Participants shared ideas about recruitment and data collection priorities for baseline and follow-up surveys. These included understanding the journey to starting hormone therapy (information-seeking, decision-making), access to services for GAHT initiation, appropriateness of information provision, receipt of the first prescription, goals for and experience of GAHT, and the unique needs of non-binary people.

Discussion

Input from a TNB advisory group and health care professionals has informed the development of a survey that will be used to understand the experience of, and outcomes for, people starting GAHT in NZ. Findings from this planned prospective cohort study have the potential to improve access to GAHT for TNB people who wish to pursue this option.

Keywords: community collaboration, general practice, hormone/endocrinology, non-binary, primary care, prospective cohort study, transgender.

References

1 van Leerdam TR, Zajac JD, Cheung AS. The effect of gender-affirming hormones on gender dysphoria, quality of life, and psychological functioning in transgender individuals: a systematic review. Transgend Health 2023; 8(1): 6-21.
| Crossref | Google Scholar |

2 Delahunt JW, Denison HJ, Sim DA, et al. Increasing rates of people identifying as transgender presenting to Endocrine Services in the Wellington region. N Z Med J 2018; 131(1468): 33-42.
| Google Scholar | PubMed |

3 Fraser G, Brady A, Wilson MS. What if I’m not trans enough? What if I’m not man enough?”: transgender young adults’ experiences of gender-affirming healthcare readiness assessments in Aotearoa New Zealand. Int J Transgend Health 2021; 22(4): 454-467.
| Crossref | Google Scholar | PubMed |

4 Ker A, Fraser G, Fleming T, et al. ‘A little bubble of utopia’: constructions of a primary care-based pilot clinic providing gender affirming hormone therapy. Health Sociol Rev 2021; 30(1): 25-40.
| Crossref | Google Scholar | PubMed |

5 Carroll R, Carroll RW, Bullock J, et al. Primary Care Gender Affirming Hormone Therapy Initiation Guidelines. 2023. Available at https://blogs.otago.ac.nz/rainbow/ [Accessed 30 March 2023].

6 Spanos C, Grace JA, Leemaqz SY, et al. The informed consent model of care for accessing gender-affirming hormone therapy is associated with high patient satisfaction. J Sex Med 2021; 18(1): 201-208.
| Crossref | Google Scholar | PubMed |

7 Olson-Kennedy J, Chan Y-M, Rosenthal S, et al. Creating the trans youth research network: a collaborative research endeavor. Transgend Health 2019; 4(1): 304-312.
| Crossref | Google Scholar | PubMed |

8 Towers S, Prizgintas D, Crossen K. Community‐based model for adolescent transgender health care. J Paediatr Child Health 2021; 57(10): 1617-1620.
| Crossref | Google Scholar | PubMed |

9 D’hoore L, T’Sjoen G. Gender-affirming hormone therapy: an updated literature review with an eye on the future. J Intern Med Suppl 2022; 291(5): 574-592.
| Crossref | Google Scholar | PubMed |

10 Chen D, Berona J, Chan Y-M, et al. Psychosocial functioning in transgender youth after 2 years of hormones. N Engl J Med 2023; 388(3): 240-250.
| Crossref | Google Scholar | PubMed |

11 Allen LR, Watson LB, Egan AM, et al. Well-being and suicidality among transgender youth after gender-affirming hormones. Clin Pract Pediatr 2019; 7(3): 302-311.
| Crossref | Google Scholar |

12 Tordoff DM, Wanta JW, Collin A, et al. Mental health outcomes in transgender and nonbinary youths receiving gender-affirming care. JAMA Netw Open 2022; 5(2): e220978.
| Crossref | Google Scholar | PubMed |

13 Rainbow health gets funding boost. 2022. Available at https://www.beehive.govt.nz/release/rainbow-health-gets-funding-boost [Accessed 30 March 2023]

14 King N Template analysis. In: Symon G, Cassell C, editors. Qualitative methods and analysis in organizational research: A practical guide. Sage Publications Ltd; 1998. pp. 118–134.

15 Kroenke K, Spitzer R, Williams JBW. The PHQ‐9: validity of a brief depression severity measure. J Gen Inter Med 2001; 16(19): 606-613.
| Crossref | Google Scholar |

16 Spitzer RL, Kroenke K, Williams JBW, et al. A brief measure for assessing generalised anxiety disorder: the GAD-7. Arch Intern Med 2006; 166(10): 1092-1097.
| Crossref | Google Scholar |

17 Testa RJ, Habarth J, Peta J, et al. Development of the gender minority stress and resilience measure. Psychol Sex Orientat Gend Divers 2015; 2(1): 65-77.
| Crossref | Google Scholar |

18 Jones BA, Bouman WP, Haycraft E, et al. The Gender Congruence and Life Satisfaction Scale (GCLS): Development and validation of a scale to measure outcomes from transgender health services. Int J Transgend 2019; 20(1): 63-80.
| Crossref | Google Scholar |

19 Cocchetti C, Ristori J, Romani A, et al. Hormonal treatment strategies tailored to non-binary transgender individuals. J Clin Med 2020; 9(6): 1609.
| Crossref | Google Scholar | PubMed |

20 Turban JL, Loo SS, Almazan AN, et al. Factors leading to “Detransition” among transgender and gender diverse people in the United States: a mixed-methods analysis. LGBT Health 2021; 8(4): 273-280.
| Crossref | Google Scholar | PubMed |

21 MacKinnon KR, Ashley F, Kia H, et al. Preventing transition “regret”: an institutional ethnography of gender-affirming medical care assessment practices in Canada. Soc Sci Med 2021; 291: 114477.
| Crossref | Google Scholar | PubMed |

22 Olson KR, Durwood L, Horton R, et al. Gender identity 5 years after social transition. Pediatrics 2022; 150(2): e2021056082.
| Crossref | Google Scholar | PubMed |