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 11
2
Abstract
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.
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.
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.
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.
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.
WHAT GAP THIS FILLS |
What is already known: There is a shift towards general practitioners (GPs) prescribing gender-affirming hormone therapy (GAHT) in primary care settings using an informed consent model of care. There is a lack of long-term data on health and wellbeing outcomes for people taking GAHT in Aotearoa New Zealand. |
What this study adds: The insights from this study offer a blueprint for current and future survey design, to ensure data collection is responsive to the needs of transgender and non-binary (TNB) communities and health care providers. These findings will inform future research to equip health care professionals involved in prescribing GAHT with local, evidence-based data to support their delivery of quality health care to TNB people. |
Introduction
Little is known about the health care pathways and long-term outcomes of transgender and non-binary (TNB) young people who are seeking gender-affirming hormone therapy (GAHT) in Aotearoa New Zealand (NZ). GAHT can play an important role in gender affirmation by helping align a person’s body with their gender. It can help reduce gender dysphoria, and improve psychological wellbeing and quality of life.1 In NZ, GAHT has traditionally been initiated in secondary care, usually requiring an assessment from a qualified mental health professional before prescribing.2 This approach can be experienced as pathologising of gender identity, and often results in long wait times and potential cost barriers for patients.2,3 In recent years, pathways have been developed to initiate GAHT in primary care by general practitioners (GPs)4 and guidelines for the initiation of GAHT in primary care have been endorsed by the Royal New Zealand College of General Practitioners,5 although adoption of these in practice is inconsistent due to a lack of funding and education. This approach takes the ethical stance of respecting people’s bodily autonomy and an adult’s capacity to provide informed consent for treatment, while recognising the GP as a specialist in taking a holistic approach which considers all aspects of a patient’s wellbeing.6 This model has advantages for TNB people, with clear potential to reduce stress and improve service access and acceptability.4,6
GPs have expressed concerns about initiating GAHT in younger adults related to age, co-existing mental health issues, neurodivergence and fears around regret, and possible de- or retransition (when a person stops their gender affirmation or transition, or transitions back to their gender assigned at birth).1,7 For GPs to feel comfortable and confident in their care of TNB patients, local evidence on long-term outcomes of this approach is needed. No longitudinal data exists for people initiating GAHT in NZ, but two small cross-sectional studies suggest that GAHT initiation in primary care is more acceptable to TNB people than in secondary care.4,8 In the absence of local long-term health data, GP concerns may be hard to allay. However, international research in specialised gender clinics and secondary care has shown low rates of physical risk9 and improvements in mental health.10–12 Alongside increased GP involvement in GAHT initiation, Te Whatu Ora (NZ’s national public health agency) are funding new community-driven models of gender affirming health care,13 making this an ideal time to gather long-term health and wellbeing outcomes for people on GAHT. This paper describes the findings from stakeholder engagement undertaken to inform the development of a survey-based prospective cohort study to understand the experiences of TNB people who initiate GAHT in NZ.
Methods
Participants
TNB people aged 18–25 years living in NZ were eligible to join the community advisory group (CAG). Invitations were sent to rainbow support groups to share with members. Eleven people contacted the researchers expressing interest; nine agreed to participate, and six attended the first hui (meeting).
Contacts known to the authors, who work with TNB people, were emailed a brief description of the project inviting participation. Participants included health care professionals (HCPs) who prescribe GAHT in primary care (GPs) and secondary care (endocrinologists, adolescent health, sexual health), and mental health professionals who support TNB people. Sixteen professionals expressed interest; 14 agreed to participate and attended the hui. HCPs were divided into three group based on their profession (GPs = 5, secondary care = 4, mental health = 5).
Six CAG members and 14 HCPs shared their views about data collection priorities and design of a prospective cohort study. Characteristics of participants are presented in Table 1.
Characteristic | Total participants (n = 20) | |
---|---|---|
n | ||
Community advisory group (CAG) members total | 6 | |
Age range | ||
18–20 years | 3 | |
21–24 years | 3 | |
Ethnicity (total count)A | ||
NZ European | 4 | |
Asian | 3 | |
Gender (total count)A | ||
Non-binary | 4 | |
Transmasculine, male | 2 | |
Transfeminine | 1 | |
Region of residence | ||
South Island cities | 3 | |
North Island cities | 3 | |
Health care professionals (HCP) total | 14 | |
Secondary care | ||
Endocrinologist | 2 | |
Adolescent health physician | 1 | |
Sexual health physician | 1 | |
Mental health | ||
Psychologist | 3 | |
Psychotherapist | 1 | |
Counsellor/Social worker | 1 | |
Primary care | ||
General practitioner (GP) | 5 | |
Region of employment/work | ||
South Island cities | 3 | |
North Island cities | 11 |
Data collection and analysis
All participants signed consent forms prior to the first hui. Participants were given gift vouchers in recognition of their contribution to this work. Ethical approval was granted by University of Otago Human Ethics Committee (Ref. D22/339, 8 December 2022).
Semi-structured interview schedules were used to guide discussions about study recruitment and data collection priorities to better understand the journeys to starting GAHT for TNB people in NZ (see Supplementary Table S1 and S2). An online hui was held with the CAG in April 2023 co-facilitated by three members of the research team: AK (transmasculine, Pākehā), MP (bisexual cisgender, Māori), and RC (cisgender, Pākehā). Three online hui with the three HCP groups were facilitated by RC and SG (cisgender, Pākehā) between May and June 2023.
Audio-recordings were transcribed using AI software Sonix, with manual corrections made by authors AK and MP. All authors familiarised themselves with the transcripts. Template analysis was used where data was initially coded based on themes identified from the interview schedule.14 New themes were added, if not already appearing in the initial coding list, and then the template was applied to all the transcripts and modified as necessary to take account of new data. The final template involved the over-arching themes of accessing, starting, and continuing GAHT as well as data about participant recruitment.
Results
Table 2 presents a descriptive summary of the important factors to consider when recruiting and Table 3 includes factors related to survey content. Both the CAG and HCPs shared ideas about eligibility, recruitment strategies, and people’s willingness to participate. Understanding information needs, decision-making, and factors impacting on access to services were key considerations related to GAHT initiation across all groups, as were questions around goals and the unique gender affirmation needs of non-binary people.
Table 4 presents HCPs suggestions about data collection to capture longer-term outcomes (topics that were not discussed in the CAG hui). Understanding the psychosocial impacts of GAHT (eg on wellbeing and mental health, social participation, employment, and relationships) and any mitigating factors that were deemed important. A number of HCPs expressed a desire for local data on the long-term medical and physical impacts of GAHT, some of which would need to be measured via clinical follow-up.
Data collection topic | Description of knowledge gaps | |
---|---|---|
Psychosocial impacts of GAHT over time |
| |
Understanding the role other factors potentially have on wellbeing (in a positive or negative way), such as: |
| |
Ongoing use of, and access to GAHT (beyond the initial prescription) |
| |
Understanding medical and physical impacts of long-term GAHT use | Self-reported outcomes:
|
Discussion
TNB community members and HCPs agreed that NZ-specific data relating to long-term outcomes for people on GAHT is needed and identified priorities for data collection. Overall, the CAG focused on the need to understand people’s experiences accessing GAHT and the barriers faced (including not being trusted or believed by HCPs). HCPs wanted the proposed research to improve information provision at initial appointments and commented on the potential for the findings to increase the confidence of GPs to initiate GAHT. Both the CAG and HCPs said they thought that TNB people would want to participate in this research for altruistic reasons.
The CAG and HCPs identified a need to ensure the information provided about GAHT is thorough and well understood, including on decision-making relating to fertility. The HCPs were also interested in the alignment of current information about the effects of GAHT with people’s experience of being on GAHT over time. Through a survey that follows people’s experiences of initiating and continuing GAHT, insights can be gained into TNB people’s knowledge and the impact of the information on their decisions during their GAHT journey.
Understanding the unique health care needs, goals, and experiences of non-binary people was identified as a priority by both groups. There is a gap in international (and local) research on understanding non-binary people’s experiences of GAHT. The CAG wanted to explore non-binary people’s experiences with HCPs, around being respected, honouring their gender affirmation goals, and understanding their desire for and access to variations in the standard hormone regimes. HCPs acknowledged the need for knowledge about the unique health care needs of non-binary people including goals, outcomes, and prescribing. Both the HCP and CAG discussed their experiences of non-standard GAHT prescribing for this group – an area where evidence to guide practice is currently lacking.19
HCPs deliberated on follow-up measures of psychosocial wellbeing, and the need to understand potential mitigating factors. HCPs shared that it was important to understand experiences of stopping (and sometimes restarting) GAHT as individual experiences are varied, nuanced, and have not been well researched. Limited overseas research shows low levels of regret among people taking GAHT,20–22 yet fear of future regret is often cited as a concern and contributes to reluctance among GAHT prescribers. Following participants over time will enable collection of information about satisfaction, regret, and continuation or cessation of GAHT. Increasing the available information about GAHT for HCPs and TNB people could promote appropriate access to GAHT for TNB people. Exploring longer term medical and physical consequences of GAHT was of interest to some HCPs, and while complications are uncommon in international research, no local data exist.12 Obtaining biomedical results and data from medical records will be beyond the scope of future research.
Strengths and limitations
We drew on the expertise of TNB people and HCPs from a range of disciplines involved in transgender health care, who were knowledgeable about existing research and knowledge gaps. Our CAG was small, so ideas shared about research priorities may not reflect those of wider communities. We lacked input from Māori and Pacific TNB people, and people from rural areas where experiences might differ. Outreach and ongoing partnership with TNB community members from diverse backgrounds will be prioritised in subsequent phases of this research.
Conclusions
There is a need to collect data from people commencing GAHT in NZ, but this research should include TNB community input to ensure it is responsive to their needs as well as those of health care providers. This stakeholder engagement informed the design of a prospective cohort study to follow TNB people starting GAHT in primary or secondary care in NZ. We intend to commence recruitment in 2024. This research will help equip HCPs with knowledge that will improve the quality of care provided to TNB people in NZ.
Data availability
The data presented here are not available for sharing due to the small number of participants and in order to preserve their confidentiality.
Declaration of funding
This research was supported by funding from a University of Otago Research Grant (2023) and a University of Otago Dean’s Grant (2023).
Acknowledgements
We thank all our community advisory group participants and the health care professionals who spoke to us to inform this work. This work was funded by grants from the University of Otago (2022).
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