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 16(3) 301-307 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.

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