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What are the health outcomes of trans and gender diverse young people in Australia? Study protocol for the Trans20 longitudinal cohort study.

ABSTRACT: INTRODUCTION:Being transgender is frequently accompanied by gender dysphoria, which often coexists with mental health concerns. Increased referrals of transgender and gender diverse (TGD) youth to gender clinics have been observed in many countries. Nevertheless, there are limited empirical data on the presentation and outcomes of these patients, and there is an urgent need for more evidence to ensure optimal medical and psychosocial interventions. Here, we describe Trans20, a longitudinal study of TGD patients attending a multidisciplinary paediatric gender service in Melbourne, Australia. Trans20 aims to understand the demographic and clinical characteristics of these patients, to document the natural history of gender diversity presenting in childhood and to investigate long-term outcomes for those receiving interventions. METHODS AND ANALYSIS:Trans20 is a prospective cohort study based on children and adolescents first seen at the Royal Children's Hospital Gender Service (RCHGS) between February 2017 and February 2020. Current estimates indicate the final sample size will be approximately 600. Patients and their parents complete online questionnaires prior to the first appointment with RCHGS and regularly thereafter as part of routine clinical care. On discharge from RCHGS, patients are invited to continue undertaking questionnaires biennially. In this way, a naturally forming cohort study has been created. The primary outcomes include gender dysphoria, physical and mental health, schooling, family functioning and quality of life. Subgroup analyses based on factors such as gender identity, birth-assigned sex and treatment received will be performed using bivariate and multivariate modelling as appropriate, and relevant statistical methods will be applied for the repeated measures over time. ETHICS AND DISSEMINATION:The Royal Children's Hospital Human Research Ethics Committee approved this study (#36323). Findings from Trans20 will have translational impact by informing future treatment guidelines and gender affirming healthcare practices and will be disseminated through conferences and peer reviewed journals.

SUBMITTER: Tollit MA

PROVIDER: S-EPMC6858096 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:IntroductionThis study aimed to explore the experiences of healthcare access in a diverse sample of trans and gender diverse individuals with complex needs using qualitative methods. We recruited 12 individuals using trans community-based networks facilitated by the Gender Centre. Each individual participated in an in-depth, semi structured interview conducted by a peer interviewer. Interviews were analysed thematically.FindingsParticipants had a range of complex health needs to manage, including ongoing access to gender-affirming hormones, mental health care and sexual health care. Some also had chronic diseases. Accordingly, scheduling appointments and affording the co-payments required were major preoccupations. Most participants were not in full time work, and economic hardship proved to be a major compounding factor in issues of healthcare access, impacting on the choice of clinician or practice. Other barriers to accessing health included issues within health services, such as disrespectful attitudes, misgendering, 'deadnaming' (calling the person by their previous name), displaying an excessive interest is aspects of the participants' life that were irrelevant to the consultation, and displaying ignorance of trans services such that the participants felt an obligation to educate them. In addition, participants noted how stereotyped ideas of trans people could result in inaccurate assumptions about their healthcare needs. Positive attributes of services were identified as respectful communication styles, clean, welcoming spaces, and signs that indicated professionalism, care and openness, such as relevant information pamphlets and visibility of LGBTIQ service orientation. Participants valued peer-based advice very highly, and some would act on and trust medical advice from peers above advice from medical professionals.ConclusionThese findings demonstrate a need for comprehensive wrap-around service provision for trans people with complex needs which includes a substantial peer-based component, and addresses physical and mental health and social services conveniently and affordably.

Project description:BackgroundBoth anxiety and depression have been identified as negative health outcomes associated with the distressing nature of the Covid-19 pandemic, especially among young people. Within this age demographic, trans and gender diverse people may be particularly vulnerable to pandemic-related mental health outcomes, such as anxiety and depression, due to the social challenges, gender dissonance, and poor mental health they experience. Furthermore, the social distancing measures impose several unique social and help-seeking challenges which may further contribute to the worsening of mental health. While there has been acknowledgment that vulnerable populations may be disproportionally affected by the pandemic, the experiences of trans and gender diverse youth have received very little empirical attention.AimsTo explore the mental health impact of Covid-19 on the lives of young trans and gender diverse people in the UK.MethodIn total, 243 people took part in an online survey between May and July in 2020. Eighty-two people were removed due to providing insufficient data. The analyzed dataset therefore comprised of 161 respondents ranging from 16 to 25 years (M = 20; SD = 2.68). Participants were asked how social distancing measures had impact on their social lives, mental health and access to health services. They were also asked to complete validated measures of anxiety and depression.ResultsThis study found that those who experienced a greater impact of the Covid-19 outbreak and its associated social distancing measures, reported poorer mental health. Lack of social support, negative interpersonal interactions, unsupportive and non-affirming living environments and the inability to access mental health support and gender-affirming interventions were all factors that were associated with poor mental health.ConclusionThe findings provide specific direction for the tailoring of mental health service delivery to this population, noting the need for private, safe spaces in which young people can feel supported and have their gender identity affirmed.

Project description:BACKGROUND:Young people have unique social, emotional and developmental needs that require a welcoming and responsive health system, and policies that support their access to health care. Those who are socially or culturally marginalised may face additional challenges in navigating health care, contributing to health inequity. The aim of this study was to understand health system navigation, including the role of technology, for young people belonging to one or more marginalised groups, in order to inform youth health policy in New South Wales, Australia. METHODS:This qualitative longitudinal study involved 2-4 interviews each over 6 to 12 months with marginalised young people aged 12-24 years living in NSW. The analysis used Nvivo software and grounded theory. RESULTS:We interviewed 41 young people at baseline who were living in rural or remote areas, sexuality and/or gender diverse, refugee, homeless, and/or Aboriginal. A retention rate of over 85% was achieved. Nineteen belonged to more than one marginalised group allowing an exploration of intersectionality. General practitioners (family physicians) were the most commonly accessed service throughout the study period. Participants were ambivalent about their healthcare journeys. Qualitative analysis identified five themes: 1. Technology brings opportunities to understand, connect and engage with services 2. Healthcare journeys are shaped by decisions weighing up convenience, engagement, effectiveness and affordability. 3. Marginalised young people perceive and experience multiple forms of discrimination leading to forgone care. 4. Multiple marginalisation makes health system navigation more challenging 5. The impact of health system complexity and fragmentation may be mitigated by system knowledge and navigation support CONCLUSIONS: The compounding effects of multiple discrimination and access barriers were experienced more strongly for young people belonging to mutiple marginalised groups. We identify several areas for improving clinical practice and policy. Integrating technology and social media into processes that facilitate access and navigation, providing respectful and welcoming services that recognise diversity, improving health literacy and involving professionals in advocacy and navigation support may help to address these issues.

Project description:ObjectivesMental disorders typically emerge during adolescence and young adulthood and put young people at risk for prolonged socioeconomic difficulties. This study describes the longitudinal course of social and occupational functioning of young people attending primary care-based, early intervention services.DesignA longitudinal study of young people receiving mental healthcare.SettingData were collected between January 2005 and August 2017 from a designated primary care-based mental health service.Participants554 young people (54% women) aged 12-32 years.MeasuresA systematic medical file audit collected clinical and functional information at predetermined time intervals (ie, 3 months to 5+ years) using a clinical pro forma. Group-based trajectory modelling (GBTM) was used to identify distinct trajectories of social and occupational functioning over time (median number of observations per person=4; median follow-up time=23 months).ResultsBetween first clinical contact and time last seen, 15% of young people had reliably deteriorated, 23% improved and 62% did not demonstrate substantive change in function. Of the whole cohort, 69% had functional scores less than 70 at time last seen, indicative of ongoing and substantive impairment. GBTM identified six distinct functional trajectories whereby over 60% had moderate-to-serious functional impairment at entry and remained chronically impaired over time; 7% entered with serious impairment and deteriorated further; a quarter were mildly impaired at entry and functionally recovered and only a small minority (4%) presented with serious impairments and functionally improved over time. Not being in education, employment or training, previous hospitalisation and a younger age at baseline emerged as significant predictors of these functional trajectories.ConclusionYoung people with emerging mental disorders have significant functional impairment at presentation for care, and for the majority, it persists over the course of clinical care. In addition to providing clinical care earlier in the course of illness, these data suggest that more sophisticated and more intensive individual-level and organisational strategies may be required to achieve significant and sustained functional improvements.

Project description:IntroductionCrohn's disease and ulcerative colitis are common chronic idiopathic inflammatory bowel diseases (IBD), which cause considerable morbidity. Although the precise mechanisms of disease remain unclear, evidence implicates a strong multidirectional interplay between diet, environmental factors, genetic determinants/immune perturbations and the gut microbiota. IBD can be brought into remission using a number of medications, which act by suppressing the immune response. However, none of the available medications address any of the underlying potential mechanisms. As we understand more about how the microbiota drives inflammation, much interest has focused on identifying microbial signals/triggers in the search for effective therapeutic targets. We describe the establishment of the Australian IBD Microbiota (AIM) Study, Australia's first longitudinal IBD bioresource, which will identify and correlate longitudinal microbial and metagenomics signals to disease activity as evaluated by validated clinical instruments, patient-reported surveys, as well as biomarkers. The AIM Study will also gather extensive demographic, clinical, lifestyle and dietary data known to influence microbial composition in order to generate a more complete understanding of the interplay between patients with IBD and their microbiota.MethodsThe AIM Study is an Australian multicentre longitudinal prospective cohort study, which will enrol 1000 participants; 500 patients with IBD and 500 healthy controls over a 5-year period. Assessment occurs at 3 monthly intervals over a 24-month period. At each assessment oral and faecal samples are self-collected along with patient-reported outcome measures, with clinical data also collected at baseline, 12 and 24 months. Intestinal tissue will be sampled whenever a colonoscopy is performed. Dietary intake, general health and psychological state will be assessed using validated self-report questionnaires. Samples will undergo metagenomic, transcriptomic, proteomic, metabolomic and culturomic analyses. Omics data will be integrated with clinical data to identify predictive biomarkers of response to therapy, disease behaviour and environmental factors in patients with IBD.Ethics and disseminationEthical approval for this study has been obtained from the South Eastern Sydney Local Health District Research Ethics Committee (HREC 2019/ETH11443). Findings will be reported at national and international gastroenterology meetings and published in peer-reviewed journals.Trial registration numberACTRN12619000911190.

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What are the health outcomes of trans and gender diverse young people in Australia? Study protocol for the Trans20 longitudinal cohort study.

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