Accelerating implementation of adolescent digital health prevention programs: analysis of insights from Australian stakeholders.

Background: Chronic disease risk factors are increasing amongst adolescents, globally. Digital health prevention programs, which provide education and information to reduce chronic disease risk factors need to be equitable and accessible for all. For their success, multiple highly engaged stakeholders should be involved in development and implementation. This study aimed to evaluate stakeholders' support for, and perspectives on potential public health impact of digital health prevention programs for adolescents and potential pathways for future implementation. Methods: Qualitative semi-structured online interviews with stakeholders. Stakeholder mapping identified key individuals, groups and organizations across Australia that may influence the implementation of digital health prevention programs for adolescents. Recorded and transcribed interviews were analyzed within the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) Framework, using deductive content analysis. Findings: Nineteen interviews were conducted in 2023 with stakeholders from government, health, non-government organizations, youth services, education, community settings and others. Four overarching themes were identified: (i) existing digital health initiatives are not fit for purpose; (ii) the co-creation of digital health prevention programs is critical for successful implementation; (iii) digital health prevention programs must address equity and the unique challenges raised by technology and; (iv) system level factors must be addressed. Interpretation: Stakeholders broadly supported digital health prevention programs, yet raised unique insights to ensure that future programs create public health impact by improving chronic disease risk factors among adolescents. These insights can be applied in future development of digital health prevention programs for adolescents to strengthen widespread implementation.

Exploring how Australian general practice registrars define cultural safety with Aboriginal and Torres Strait Islander patients: a mixed method study.

BACKGROUND: Understanding how the general practice medical workforce defines cultural safety may help tailor education and training to better enable community-determined culturally safe practice. This project seeks to explore how Australian general practice registrars define cultural safety with Aboriginal and Torres Strait Islander patients and alignment with an Australian community derived definition of cultural safety. METHODS: This mixed method study involved a survey considering demographic details of general practice registrars, questionnaire, and semi-structured interviews to explore how general practice registrars defined cultural safety and a culturally safe consultation. RESULTS: Twenty-six registrars completed the survey. Sixteen registrars completed both the survey and the interview. CONCLUSION: This study shows amongst this small sample that there is limited alignment of general practice registrars' definitions of cultural safety with a community derived definition of cultural safety. The most frequently cited aspects of cultural safety included accessible healthcare, appropriate attitude, and awareness of differences.

HIV self-testing knowledge, attitudes, and practices among Asian-born gay, bisexual, and other men who have sex with men in Australia: a qualitative study.

Background: Achieving virtual elimination of HIV transmission in Australia requires a combination of high treatment rates and high testing coverage among individuals at risk of acquiring HIV. HIV self-testing (HIVST) is an additional testing approach for key populations. Objective: We aimed to examine the knowledge, attitudes, and practices of HIVST among Asian-born gay, bisexual and other men who have sex with men (GBMSM). Methods: This qualitative study used semi-structured interviews of overseas-born GBMSM of Asian background in Australia. Participants were recruited from personal networks, social media platforms, snowballing, and the Melbourne Sexual Health Centre. Twenty-five participants were purposively sampled with a range of ages and previous levels of experience with HIVST. Interview transcripts were imported into Nvivo 12 for data management. Results: The age of the participants ranged from 19 to 44 years, with a median of 30 years. Most were unaware of HIVST before the interview, and only a few had ever used one. All had limited sexual health knowledge (i.e., HIV testing, PrEP) before they arrived in Australia. Upon learning about HIVST during the interview, many expressed willingness to use HIVST, but in limited circumstances, such as traveling overseas, interim testing while taking on-demand PrEP, and point-of-sex testing. Almost all were open to distributing HIVST to their casual partners or friends, especially those they knew who engaged in high-risk sexual practice (i.e., condomless anal sex) and were not engaged in sexual healthcare. About half still preferred conventional serology testing because of regular HIV testing as part of PrEP prescription and the need for testing for other sexually transmitted infections. Conclusion: HIVST may be an acceptable additional testing approach for HIV testing among Asian-born GBMSM. Peer education and secondary distribution may help raise HIVST awareness and use.

Trends in childhood leukemia incidence in urban countries and their relation to environmental factors, including space weather.

Leukemia is the most common cancer in children. Its incidence has been increasing worldwide since 1910th, suggesting the presence of common sources of the disease, most likely related to people's lifestyle and environment. Understanding the relationship between childhood leukemia and environmental conditions is critical to preventing the disease. This discussion article examines established potentially-carcinogenic environmental factors, such as vehicle emissions and fires, alongside space weather-related parameters like cosmic rays and the geomagnetic field. To discern the primary contributor, we analyze trends and annual variations in leukemia incidence among 0-14-year-olds in the United States, Canada, Australia, and Russia from 1990 to 2018. Comparisons are drawn with the number of vehicles (representing gasoline emissions) and fire-affected land areas (indicative of fire-related pollutants), with novel data for Russia introduced for the first time. While childhood leukemia incidence is rising in all countries under study, the rate of increase in Russia is twice that of other nations, possibly due to a delayed surge in the country's vehicle fleet compared to others. This trend in Russia may offer insights into past leukemia levels in the USA, Canada, and Australia. Our findings highlight vehicular emissions as the most substantial environmental hazard for children among the factors examined. We also advocate for the consideration of potential modulation of carcinogenic effects arising from variations in cosmic ray intensity, as well as the protective role of the geomagnetic field. To support the idea, we provide examples of potential space weather effects at both local and global scales. The additional analysis includes statistical data from 49 countries and underscores the significance of the magnetic field dip in the South Atlantic Anomaly in contributing to a peak in childhood leukemia incidence in Peru, Ecuador and Chile. We emphasize the importance of collectively assessing all potentially carcinogenic factors for the successful future predictions of childhood leukemia risk in each country.

Predictors of mortality shortly after entering a long-term care facility.

OBJECTIVE: Moving into a long-term care facility (LTCF) requires substantial personal, societal and financial investment. Identifying those at high risk of short-term mortality after LTCF entry can help with care planning and risk factor management. This study aimed to: (i) examine individual-, facility-, medication-, system- and healthcare-related predictors for 90-day mortality at entry into an LTCF and (ii) create risk profiles for this outcome. DESIGN: Retrospective cohort study using data from the Registry of Senior Australians. SUBJECTS: Individuals aged ≥ 65 years old with first-time permanent entry into an LTCF in three Australian states between 01 January 2013 and 31 December 2016. METHODS: A prediction model for 90-day mortality was developed using Cox regression with the purposeful variable selection approach. Individual-, medication-, system- and healthcare-related factors known at entry into an LTCF were examined as predictors. Harrell's C-index assessed the predictive ability of our risk models. RESULTS: 116,192 individuals who entered 1,967 facilities, of which 9.4% (N = 10,910) died within 90 days, were studied. We identified 51 predictors of mortality, five of which were effect modifiers. The strongest predictors included activities of daily living category (hazard ratio [HR] = 5.41, 95% confidence interval [CI] = 4.99-5.88 for high vs low), high level of complex health conditions (HR = 1.67, 95% CI = 1.58-1.77 for high vs low), several medication classes and male sex (HR = 1.59, 95% CI = 1.53-1.65). The model out-of-sample Harrell's C-index was 0.773. CONCLUSIONS: Our mortality prediction model, which includes several strongly associated factors, can moderately well identify individuals at high risk of mortality upon LTCF entry.

Fear of the human 'super predator' in native marsupials and introduced deer in Australia.

Recent experiments have demonstrated that carnivores and ungulates in Africa, Asia, Europe and North America fear the human 'super predator' far more than other predators. Australian mammals have been a focus of research on predator naiveté because it is suspected they show atypical antipredator responses. To experimentally test if mammals in Australia also most fear humans, we quantified the responses of four native marsupials (eastern grey kangaroo, Bennett's wallaby, Tasmanian pademelon, common brushtail possum) and introduced fallow deer to playbacks of predator (human, dog, Tasmanian devil, wolf) or non-predator control (sheep) vocalizations. Native marsupials most feared the human 'super predator', fleeing humans 2.4 times more often than the next most frightening predator (dogs), and being most, and significantly, vigilant to humans. These results demonstrate that native marsupials are not naïve to the peril humans pose, substantially expanding the taxonomic and geographic scope of the growing experimental evidence that wildlife worldwide generally perceive humans as the planet's most frightening predator. Introduced fallow deer fled humans, but not more than other predators, which we suggest may result from their being introduced. Our results point to both challenges concerning marsupial conservation and opportunities for exploiting fear of humans as a wildlife management tool.

Long term declines in the functional diversity of sharks in the coastal oceans of eastern Australia.

Human impacts lead to widespread changes in the abundance, diversity and traits of shark assemblages, altering the functioning of coastal ecosystems. The functional consequences of shark declines are often poorly understood due to the absence of empirical data describing long-term change. We use data from the Queensland Shark Control Program in eastern Australia, which has deployed mesh nets and baited hooks across 80 beaches using standardised methodologies since 1962. We illustrate consistent declines in shark functional richness quantified using both ecological (e.g., feeding, habitat and movement) and morphological (e.g., size, morphology) traits, and this corresponds with declining ecological functioning. We demonstrate a community shift from targeted apex sharks to a greater functional richness of non-target species. Declines in apex shark functional richness and corresponding changes in non-target species may lead to an anthropogenically induced trophic cascade. We suggest that repairing diminished shark populations is crucial for the stability of coastal ecosystems.

Goal setting in later life: an international comparison of older adults' defined goals.

BACKGROUND: Studies of goal setting in later life tend to focus on health-related goal setting, are pre-determined by the researcher (i.e., tick box), and/or are focused on a specific geographical area (i.e., one country). This study sought to understand broader, long-term goals from the perspective of older adults (65 + years) from Australia, New Zealand (NZ), United Kingdom (UK), Ireland, Canada, and the United States of America (USA). METHODS: Through a cross-sectional, online survey (N = 1,551), this exploratory study examined the qualitative goal content of older adults. Thematic analysis was used to analyze the qualitative data, and bivariate analyses were used to compare thematic differences between regions and by participants' sex. RESULTS: Over 60% of the participants reported setting goals, and participants from the Australia-NZ and Canada-USA regions were more likely to set goals than the UK-Ireland region. The following six overarching themes were identified from the 946 goals reported: health and well-being; social connections and engagement; activities and experiences; finance and employment; home and lifestyle; and attitude to life. CONCLUSIONS: This study supports previous research that demonstrates that older adults can and do set personal goals that are wide ranging. These findings support the need for health professionals to consider different methods for elucidating this important information from older adults that builds rapport and focuses on aspects viewed as more important by the older adult and therefore potentially produces improved health outcomes.

A systematic literature review of the epidemiology and burden of herpes zoster in selected locales in Asia Pacific.

Herpes zoster (HZ) is a painful rash which typically affects older adults. This is of concern in Asia-Pacific given its aging population. As HZ epidemiology and burden are evolving, this systematic literature review aimed to update the current understanding of HZ burden and associated costs for selected Asia-Pacific locales. MEDLINE and Embase were searched for English articles of HZ studies conducted in Australia, China, Hong Kong, Japan, Korea, New Zealand, Singapore, and Taiwan. Eligible outcomes included HZ incidence and prevalence, occurrence of HZ-related complications, healthcare resource utilization, costs, and HZ-associated quality of life outcomes. This paper focused on HZ data in the general adult population (N = 90 articles). Substantial HZ-related disease and economic burden were observed in these locales, consistent with global trends. These findings reinforce the increasing burden of HZ and need for preventive strategies, which may include raising awareness and encouraging timely vaccination.

Herpes zoster, also known as shingles, is a painful rash that usually resolves after a few weeks, although some people experience serious or long-lasting complications. Shingles is common, affecting around one in every three individuals in their lifetime, and older persons are more likely to have shingles. Given the aging population in the Asia-Pacific region, shingles represents an increasingly important health issue as the proportion of older people increases. Vaccination can help prevent shingles and avoid its complications. New data on the trends and burden of shingles in this region are regularly generated. Therefore, in this study, we looked at studies from selected countries published over the past twenty years to summarize the latest available information on: how many people experience shingles in selected Asia-Pacific areas, how these individuals and societies are affected, and the related costs. Consistent with previous research, this study observed an increasing trend in the number of persons with shingles and costs of managing it, especially in older adults. In populations that are aging, there is a need for ways to reduce the risk of shingles and to lessen its burden on the healthcare system and society. Our findings can help to inform current development of strategies to reduce the risk of shingles, including education (on the burden and risk of shingles) and encouraging uptake of preventive measures.

Seven-years of alcohol consumption in Australia by wastewater analysis: Exploring patterns by remoteness and socioeconomic factors.

BACKGROUND: Wastewater analysis provides a complementary measure of alcohol use in whole communities. We assessed absolute differences and temporal trends in alcohol consumption by degree of remoteness and socioeconomics indicators in Australia from 2016 to 2023. METHODS: Alcohol consumption estimates from 50 wastewater treatment plants (WWTP) in the Australian National Wastewater Drug Monitoring Program were used. Trends were analysed based on 1) site remoteness: Major Cities, Inner Regional and a combined remoteness category of Outer Regional and Remote, and 2) using two socioeconomic indexes from the Australian Bureau of Statistics (ABS) relating to advantage and disadvantage for Income, education, occupation, and housing. RESULTS: Consumption estimates were similar for Major Cities and Inner Regional areas (14.3 and 14.4L/day/1000 people), but significantly higher in Outer Regional and Remote sites (18.6L/day/1000 people). Consumption was decreasing in Major cities by 4.5% annually, Inner Regional by 2.4%, and 3.5% in the combined Outer Regional and Remote category. Consumption estimates were higher in socioeconomically advantaged quartiles than those of lower advantage (0%-25% mean = 13.0, 75%-100% mean = 17.4). Consumption in all quartiles decreased significantly over the 7 year period with annual rates of decrease of 0.9%, 3.7%, 3.6%, and 3.0% for the lowest to highest quartile, respectively. CONCLUSIONS: Declines in Australian alcohol consumption have been steeper in large urban areas than regional and remote areas. There were smaller annual decreases in the most socioeconomically disadvantaged areas. If continued, these trends may increase Australian health inequalities. Policy and prevention work should be appropriately targeted to produce more equitable long-term outcomes.

Investigating the effects of synbiotic supplementation on functional movement, strength and muscle health in older Australians: a study protocol for a double-blind, randomized, placebo-controlled trial.

BACKGROUND: Aging has been associated with a progressive loss of skeletal muscle quality, quantity and strength, which may result in a condition known as sarcopenia, leading to a decline in physical performance, loss of independence and reduced quality of life. While the cause of impaired physical functioning observed in elderly populations appears to be multifactorial, recent evidence suggests that age-associated alterations in gut microbiota could be a contributing factor. The primary objective will be to assess the effects of a dietary synbiotic formulation on sarcopenia-related functional outcomes such as handgrip strength, gait speed and physical performance within older individuals living independently. The secondary objective will be to examine associations between changes in gut microbiota composition, functional performance and lean muscle mass. METHODS: Seventy-four elderly (60-85 years) participants will be randomized in a double-blind, placebo-controlled fashion to either an intervention or control group. The intervention group (n = 37) will receive oral synbiotic formulation daily for 16 weeks. The control group (n = 37) will receive placebo. Assessments of physical performance (including Short Physical Performance Battery, handgrip strength and timed up-and-go tests) and muscle ultrasonography will be performed at 4 time points (baseline and weeks 8, 16 and 20). Likewise, body composition via bioelectric impedance analysis and blood and stool samples will be collected at each time point. Dual-energy X-ray absorptiometry will be performed at baseline and week 16. The primary outcomes will be between-group changes in physical performance from baseline to 16 weeks. Secondary outcomes include changes in body composition, muscle mass and architecture, fecal microbiota composition and diversity, and fecal and plasma metabolomics. DISCUSSION: Gut-modulating supplements appear to be effective in modifying gut microbiota composition in healthy older adults. However, it is unclear whether these changes translate into functional and/or health improvements. In the present study, we will investigate the effects of a synbiotic formulation on measures of physical performance, strength and muscle health in healthy older populations. TRIAL REGISTRATION: This study was prospectively registered with the Australian New Zealand Clinical Trials Registry (ACTRN12622000652774) in May 2022.

The reliability of the College of Intensive Care Medicine of Australia and New Zealand "Hot Case" examination.

BACKGROUND: High stakes examinations used to credential trainees for independent specialist practice should be evaluated periodically to ensure defensible decisions are made. This study aims to quantify the College of Intensive Care Medicine of Australia and New Zealand (CICM) Hot Case reliability coefficient and evaluate contributions to variance from candidates, cases and examiners. METHODS: This retrospective, de-identified analysis of CICM examination data used descriptive statistics and generalisability theory to evaluate the reliability of the Hot Case examination component. Decision studies were used to project generalisability coefficients for alternate examination designs. RESULTS: Examination results from 2019 to 2022 included 592 Hot Cases, totalling 1184 individual examiner scores. The mean examiner Hot Case score was 5.17 (standard deviation 1.65). The correlation between candidates' two Hot Case scores was low (0.30). The overall reliability coefficient for the Hot Case component consisting of two cases observed by two separate pairs of examiners was 0.42. Sources of variance included candidate proficiency (25%), case difficulty and case specificity (63.4%), examiner stringency (3.5%) and other error (8.2%). To achieve a reliability coefficient of > 0.8 a candidate would need to perform 11 Hot Cases observed by two examiners. CONCLUSION: The reliability coefficient for the Hot Case component of the CICM second part examination is below the generally accepted value for a high stakes examination. Modifications to case selection and introduction of a clear scoring rubric to mitigate the effects of variation in case difficulty may be helpful. Increasing the number of cases and overall assessment time appears to be the best way to increase the overall reliability. Further research is required to assess the combined reliability of the Hot Case and viva components.

The feasibility, acceptability and appropriateness of screening for frailty in Australians aged 75 years and over attending Australian general practice.

Background Globally, frailty is associated with a high prevalence of avoidable hospital admissions and emergency department visits, with substantial associated healthcare and personal costs. International guidelines recommend incorporation of frailty identification and care planning into routine primary care workflow to support patients who may be identified as pre-frail/frail. Our study aimed to: (1) determine the feasibility, acceptability, appropriateness and determinants of implementing a validated FRAIL Scale screening Tool into general practices in two disparate Australian regions (Sydney North and Brisbane South); and (2) map the resources and referral options required to support frailty management and potential reversal. Methods Using the FRAIL Scale Tool, practices screened eligible patients (aged ≥75years) for risk of frailty and referred to associated management options. The percentage of patients identified as frail/pre-frail, and management options and referrals made by practice staff for those identified as frail/pre-frail were recorded. Semi-structured qualitative interviews were conducted with practice staff to understand the feasibility, acceptability, appropriateness and determinants of implementing the Tool. Results The Tool was implemented by 19 general practices in two Primary Health Networks and 1071 consenting patients were assessed. Overall, 80% of patients (n =860) met the criterion for frailty: 33% of patients (n =352) were frail, and 47% were pre-frail (n =508). They were predominantly then referred for exercise prescription, medication reviews and geriatric assessment. The Tool was acceptable to staff and patients and compatible with practice workflows. Conclusions This study demonstrates that frailty is identified frequently in Australians aged ≥75years who visit their general practice. It's identification, linked with management support to reverse or reduce frailty risk, can be readily incorporated into the Medicare-funded annual 75+ Health Assessment.

'If you are feeling alone and you are not feeling safe, it impacts everything': a mixed-methods exploration of international students' accommodation, subjective wellbeing and mental health help-seeking.

BACKGROUND: The international education sector is important not only to Australian society, but also to the national economy. There are growing concerns about the potential wellbeing challenges facing international students in their host country, owing to acculturative stress; including loneliness, isolation and experiences of racism. Risks include poor mental health and decreased likelihood to access support due to stigma, language and cultural barriers, not knowing where to seek help, and poor mental health knowledge. METHODS: This study explored students' perceptions of their accommodation, subjective wellbeing (through the Personal Wellbeing Index, ['PWI']), mental health help-seeking and individual engagement with evidence-based everyday health promotion actions (informed by the '5 Ways to Wellbeing' model) through an online survey (N = 375) and three online focus groups (N = 19). A mixed-methods approach using descriptive statistics, ANOVA, regression analysis and thematic analysis, were used. RESULTS: The PWI of international students in the survey was observed to be substantially lower (M = 60.7) than that reported for the Australian population (M = 77.5). Accommodation impacted on wellbeing (loneliness, belonging, connectedness) in a number of different ways including through location, safety, and shared accommodation. In terms of help-seeking, international students noted a number of barriers to accessing support for mental health: cost of accessing support, language and cultural barriers, lack of information on where to find support and stigma. CONCLUSIONS: In the discussion, implications of the findings are considered, including that more could be done to shape policy and practice in service and facility provision around wellbeing, connectedness, and help-seeking for mental health support of international students.

Australian public perspectives on genomic newborn screening: which conditions should be included?

BACKGROUND: Implementing genomic sequencing into newborn screening programs allows for significant expansion in the number and scope of conditions detected. We sought to explore public preferences and perspectives on which conditions to include in genomic newborn screening (gNBS). METHODS: We recruited English-speaking members of the Australian public over 18 years of age, using social media, and invited them to participate in online focus groups. RESULTS: Seventy-five members of the public aged 23-72 participated in one of fifteen focus groups. Participants agreed that if prioritisation of conditions was necessary, childhood-onset conditions were more important to include than later-onset conditions. Despite the purpose of the focus groups being to elicit public preferences, participants wanted to defer to others, such as health professionals or those with a lived experience of each condition, to make decisions about which conditions to include. Many participants saw benefit in including conditions with no available treatment. Participants agreed that gNBS should be fully publicly funded. CONCLUSION: How many and which conditions are included in a gNBS program will be a complex decision requiring detailed assessment of benefits and costs alongside public and professional engagement. Our study provides support for implementing gNBS for treatable childhood-onset conditions.

Australian Headache Epidemiology Data (AHEAD): a pilot study to assess sampling and engagement methodology for a nationwide population-based survey.

BACKGROUND: There are no robust population-based Australian data on prevalence and attributed burden of migraine and medication-overuse headache (MOH) data. In this pilot cross-sectional study, we aimed to capture the participation rate, preferred response method, and acceptability of self-report questionnaires to inform the conduct of a future nationwide migraine/MOH epidemiological study. METHODS: We developed a self-report questionnaire, available in hard-copy and online, including modules from the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire, the Eq. 5D (quality of life), and enquiry into treatment gaps. Study invitations were mailed to 20,000 randomly selected households across Australia's two most populous states. The household member who most recently had a birthday and was aged ≥ 18 years was invited to participate, and could do so by returning a hard-copy questionnaire via reply-paid mail, or by entering responses directly into an online platform. RESULTS: The participation rate was 5.0% (N = 1,000). Participants' median age was 60 years (IQR 44-71 years), and 64.7% (n = 647) were female. Significantly more responses were received from areas with relatively older populations and middle-level socioeconomic status. Hard copy was the more commonly chosen response method (n = 736). Females and younger respondents were significantly more likely to respond online than via hard-copy. CONCLUSIONS: This pilot study indicates that alternative methodology is needed to achieve satisfactory engagement in a future nationwide migraine/MOH epidemiological study, for example through inclusion of migraine screening questions in well-resourced, interview-based national health surveys that are conducted regularly by government agencies. Meanwhile, additional future research directions include defining and addressing treatment gaps to improve migraine awareness, and minimise under-diagnosis and under-treatment.

Benchmarking the university campus food environment and exploring student perspectives about food insecurity and healthy eating: a case study from Australia.

OBJECTIVE: To benchmark the university food environment and explore students' experiences with food insecurity and healthy eating in order to inform interventions to improve access and affordability of healthy foods for university students. DESIGN: A food environment audit was conducted on the university campus using the Uni-Food tool from April to May 2022 and was comprised of three main components, university systems and governance, campus facilities and environment, and food retail outlets. A qualitative study design was also used to conduct focus groups and semi-structured interviews with students to explore key themes regarding their experiences with food insecurity and healthy eating. SETTING: Macquarie University, Australia. PARTICIPANTS: For the food environment audit 24 retail outlets on campus and for the qualitative component 29 domestic and international students enrolled at Macquarie University. RESULTS: The university only scored 27% in total for all components in the food environment audit. The results showed the need for better governance and leadership of the food environment. The qualitative component suggested that the main barriers to accessing healthy foods were related to availability, pricing, and knowledge of healthy foods. Future intervention ideas included free fruits and vegetables, food relief, discounts, improved self-catering facilities, education, and increased healthy food outlets. CONCLUSIONS: Improving governance measures related to healthy eating on campus are a core priority to strengthen the food environment and students identified pricing and availability as key issues. These findings will inform effective and feasible interventions to improve food security and healthy eating on campus.

'High hopes for treatment': Australian stakeholder perspectives of the clinical translation of advanced neurotherapeutics for rare neurological diseases.

INTRODUCTION: Advanced therapies offer unprecedented opportunities for treating rare neurological disorders (RNDs) in children. However, health literacy, perceptions and understanding of novel therapies need elucidation across the RND community. This study explored healthcare professionals' and carers' perspectives of advanced therapies in childhood-onset RNDs. METHODS: In this mixed-methodology cross-sectional study, 20 healthcare professionals (clinicians, genetic counsellors and scientists) and 20 carers completed qualitative semistructured interviews and custom-designed surveys. Carers undertook validated psychosocial questionnaires. Thematic and quantitative data analysis followed. RESULTS: Participants described high positive interest in advanced therapies, but low knowledge of, and access to, reliable information. The substantial 'therapeutic gap' and 'therapeutic odyssey' common to RNDs were recognised in five key themes: (i) unmet need and urgency for access; (ii) seeking information; (iii) access, equity and sustainability; (iv) a multidisciplinary and integrated approach to care and support and (v) difficult decision-making. Participants were motivated to intensify RND clinical trial activity and access to advanced therapies; however, concerns around informed consent, first-in-human trials and clinical trial procedures were evident. There was high-risk tolerance despite substantial uncertainties and knowledge gaps. RNDs with high mortality, increased functional burdens and no alternative therapies were consistently prioritised for the development of advanced therapies. However, little consensus existed on prioritisation to treatment access. CONCLUSIONS: This study highlights the need to increase clinician and health system readiness for the clinical translation of advanced therapeutics for RNDs. Co-development and use of educational and psychosocial resources to support clinical decision-making, set therapeutic expectations and promotion of equitable, effective and safe delivery of advanced therapies are essential. PATIENT OR PUBLIC CONTRIBUTION: Participant insights into the psychosocial burden and information need to enhance the delivery of care in this formative study are informing ongoing partnerships with families, including co-production and dissemination of psychoeducational resources featuring their voices hosted on the Sydney Children's Hospitals Network website SCHN Brain-Aid Resources.

Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury.

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.