OBJECTIVES:In individuals with schizophrenia receiving either clozapine or olanzapine, this study examined changes in 1) body weight and other cardiometabolic measures and microbiota biodiversity and composition between commencement and completion of 24-week semaglutide intervention; 2) body weight between commencement and 76-week follow-up. METHODS:24-week intervention (16-weeks full-dose (1.0 mg/week) after 8-weeks' titration) of open-label nurse-administered semaglutide in a public mental health setting, with one-year post-intervention follow-up (76-week trial-completion). PARTICIPANTS:people with schizophrenia without diabetes receiving clozapine or olanzapine with BMI > 27 kg/m2. PRIMARY ENDPOINTS:%body weight change at 24-weeks, and 76-weeks. Secondary endpoints: %change in waist circumference, HbA1c at 24-weeks and 76-weeks, body composition at 24-weeks. Gut microbiota changes were compared at baseline, 10-weeks and 24-weeks intervention completion. RESULTS:Mean age: 41.5 years (range 18-61), 65.4% female. Intervention completed by 65.4% (n = 17/26). 24-week intervention: intention-to-treat body weight reduction: -9.8% (95% CI: [-12.7%, -6.8%], p < 0.001) or - 10.1 kg (95% CI [-13.6, -6.6]); waist circumference reduction: -7.3% (95% CI: [-10.1%, -4.4%], p < 0.001); HbA1c non-significant reduction: -5.3% (95% CI [-10.4%, 0.1%], p = 0.055). Microbial alpha diversity decreased as time on semaglutide increased, with enrichment of Parasutterella excrementihominis. Trial completion: 88.2% (n = 15/17). Average body weight change baseline-76-weeks: -5.1% (95% CI: [-8.3%, -1.9%], p = 0.001) or - 5.3 kg (95% CI: [-8.9, -1.7]). DISCUSSION:Semaglutide was associated with significant weight loss in overweight/obese people with schizophrenia. These benefits attenuated following semaglutide discontinuation. Gut microbial compositional differences consistent with improvement in health outcomes may occur in semaglutide-treated people living with schizophrenia.

ObjectiveTo explore quality of life outcomes for caregivers of children with childhood dementia including the positive and negative impact of caregiving. The secondary aim was to explore caregivers’ perspectives on healthcare services for children with dementia.DesignCross-sectional, mixed-methods study with analyses of quantitative and qualitative data collected via online survey.SettingAustralian tertiary referral children’s hospitals, clinics and community advocacy groups.Patients40 caregivers of children with dementia.InterventionsThe survey was developed by a multidisciplinary team of clinicians including paediatric neurologists and behavioural scientists with experience in caring for families with childhood dementias and mixed-methods research.Main outcome measuresSurveys assessed caregiver-reported health-related quality of life, psychological distress, the impacts of caregiving and perspectives on healthcare services and how they may be improved for children with dementia.ResultsPsychological distress was reported by 72.5%, caregiver stress by 67%, chronic pain or discomfort by 43% and for 87.5% their child’s condition had a moderate or severe impact on their ability to do regular daily activities. Caregivers voiced a desire for more integrated care, increased general awareness and education around childhood dementia and a greater need for more trained support services.ConclusionsCaregivers of children with dementia experience high levels of psychological distress, physical and social consequences. This study highlights the need for integrated care and psychosocial support to efficiently connect children and families with appropriate healthcare services and resources.

OBJECTIVES:To describe the characteristics, clinical presentation, documented risk factors for suicide, circumstances of death and toxicology of deaths by suicide in Australia, 2000-2024, among people known to be receiving menopause hormonal therapy. DESIGN:A retrospective descriptive study. SETTING:National population-level data retrieved from the National Coronial Information System. MAIN OUTCOME MEASURES:Characteristics, clinical presentation, circumstances of death, documented risk factors for suicide and toxicology in all cases of death by suicide among people known to be receiving menopause hormonal therapy at their time of death in Australia, 2000-2024. RESULTS:63 cases were identified with a mean age of 54 years (range 50-59). Mental health diagnoses were present in almost all cases (93.7 %), with a preponderance of anxiety and depression. Prior suicidal behaviours were present in over half (52.4 %) and chronic pain in one-third (30.2 %). Almost all of these women (96.8 %) had at least one risk factor for suicide and 79.3 % had two or more risk factors. The most common circumstances of death were drug toxicity (39.7 %) or hanging (36.5 %). Psychoactive drugs were present in blood in the majority (93.5 %), most commonly antidepressants (53.2 %), hypnosedatives (50.0 %) and opioids (29.0 %). CONCLUSIONS:Menopause hormonal therapy remains the most effective treatment for management of vasomotor symptoms and this study does not demonstrate any causal risk for suicide. Rather, it highlights that women prescribed menopause hormonal therapy who suicide have multiple risk factors for suicide including psychiatric complexity, prior suicidal behaviours, physical health comorbidity and concomitant psychoactive substance use.

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.

Objective: The objective of this study was to determine the association between gender and perceived gender equity in the critical care workforce and other health specialties. Design and setting: We conducted an online cross-sectional survey between September and November 2020. Data on demographics and perceptions of equity including the representation of women across departments and in leadership roles, knowledge of and access to flexible work practices and carers leave, and opportunities for promotion were collected. Participants: The study population included health professionals from critical care (defined as intensive care and emergency) and other specialties. We conducted a descriptive gender-disaggregated analysis. Results: A total of 478 respondents (70% women) completed the survey. The mean age of respondents was 43.9 +/- 11.2 years. Approximately half of respondents were medical practitioners (n = 235, 54%), followed by nurses (n = 135, 36%)-the remainder were from other professions. The critical care workforce accounted for 280 (64%) of responder practice settings. Statistically significant differences were reported between genders on issues such as having confidence that their department would resolve equity issues (87 [70.7%] men vs. 146 [48.2%] women; p = 0.007), access to flexible work practices (5/124 [4.0%] men vs. 20/305 [6.6%] women p = 0.001), and taking unpaid leave for carer responsibilities (91 [30.3%] women vs 9 [7.4%] men, p < 0.001). Conclusions: This work highlights differences in how men and women perceive gender equity, particularly in the critical care workforce. These findings are important to understand health care practitioners' perceptions of gender equity, as these perceptions inform behaviour.

Background: Complex psychosis is associated with high social and economic costs. The key skills and attributes needed by mental health professionals to provide optimal clinical care to people experiencing complex psychosis have not previously been defined. A framework detailing these skills and attributes is needed to support the identification of training needs for those working with this population. Methods: A modified online Delphi method was used to reach consensus on the skills and attributes essential for mental health professionals to deliver optimal clinical care to people experiencing complex psychosis. Participants were international healthcare professionals and academic researchers who self-identified as experts in complex psychosis. Participants were asked to rate their level of agreement with each item on a five-point Likert-type scale and to provide comments. Qualitative feedback was used to modify existing, or create new, items for subsequent rounds. Results: 64 responses were received across three Delphi rounds. 167 items reached consensus and were endorsed (132 in Round 1, 31 in Round 2 and 4 in Round 3). Median score range for endorsed items was 4.5/5, with 88.6% scoring 5/5. All 167 endorsed items were included in the framework, categorised into 14 overarching domains. Conclusion: Multiple skills and attributes were identified as being core components required in the delivery of optimal care by mental health professionals to people experiencing complex psychosis. The resulting framework provides a benchmark for training and skill development of mental health clinicians at both individual and team levels to optimise effective working with this high-needs population.

Purpose To provide an overview of various sepsis International Classification of Diseases (ICD) coding methods and their diagnostic accuracy. Methods We undertook a systematic scoping review between 1991 and 2020 (search terms: sepsis, coding, and epidemiology) to include studies reporting the accuracy of a sepsis ICD coding method. Studies were grouped by ICD coding method, number of diagnostic accuracy parameters, ICD version, reference standard, design, country, setting, type of dataset and sepsis definition. ICD coding methods were categorised as explicit or implicit, with the explicit methods further divided into wide and narrow groups. Descriptive statistics were used to present data. Results We analysed 17 studies, of which 16 (94.1%) used retrospective medical chart review as the reference standard for clinical sepsis, and eight (47.1%) used hospital administrative data to identify sepsis. There were 53 assessments of various ICD coding methods, with 32 (60.4%) of them being explicit and 21 (39.6%) implicit methods. The coding methods had a median sensitivity of <75% but a median specificity of >85%. However, a wide variation was noted in the diagnostic accuracy parameters of all ICD coding methods. Most of the studies showed high methodological quality. Conclusion None of the current ICD coding methods is optimal for identifying sepsis.

BACKGROUND:Childhood dementias are a group of rare pediatric conditions characterized by progressive neurocognitive decline. Quantifying and characterising phenotypes to identify similarities between specific conditions is critical to inform opportunities to optimize care and advance research. METHODS:This cross-sectional study recruited primary caregivers of children (<18 years) living with a dementia syndrome from neurology and metabolic clinics in Sydney and Adelaide, Australia. Sociodemographic and clinical data were collated. Behavior, eating, sleep, pain, and neurological disability were assessed using validated tools, including Strengths and Difficulties, Child Eating Behaviour, and Children's Sleep Habits questionnaires and visual analog of pain and modified Rankin scales. Data were analyzed with descriptive statistics. RESULTS:Among 45 children with 23 different dementia syndromes, the modified Rankin Scale demonstrated at least moderate neurological disability and functional dependence in 82% (37/45). Families reported delays in receiving an accurate diagnosis following initial symptoms (mean: 1.6 ± 1.4 years, range: 0-5 years). The most prevalent phenotypes included communication, comprehension, or recall difficulties (87%, 39/45); disturbances in sleep (80%, 36/45); appetite changes (74%, 29/39); mobility issues (53%, 24/45); and hyperactive behavior (53%, 21/40). Behavioral problems had a "high" or "very high" impact on everyday family life in 73% (24/33). CONCLUSIONS:Childhood dementia disorders share substantial behavioral, motor, sensory, and socioemotional symptoms, resulting in high care needs, despite their vast heterogeneity in age of onset and progression. Considering their unifying characteristics under one collective term is an opportunity to improve treatment, provide quality care, and accelerate research.

Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents’ healthcare experiences, psychosocial impacts, and information and support needs. Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child’s rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child’s condition trajectory. This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

Objective To describe (i) the clinical characteristics of individuals referred to the Tertiary Referral Service for Psychosis (TRSP) and (ii) the recommendations TRSP made for future treatment across psychopharmacological and other intervention domains. Method Retrospective audit of clinical data collected during the assessment process of individuals who accessed TRSP between 02/06/2020 and 31/12/2022. Categories of recommendations made following collaborative care planning comprised psychopharmacological, neuropsychological, psychological, psychosocial, physical health, substance misuse and other domains. Results Eighty-two individuals were included, with diagnoses most commonly of schizophrenia (54.9%) and schizoaffective disorder (30.5%). The median PANSS score was 88.0 (73–100). Social occupational functioning was very poor (SOFAS M = 37.0, SD = 15.1). Cognitive functioning was poor (RBANS: M = 74.6; SD: 15.0). 67.1% had physical health comorbidities, with high prevalence of smoking (52.4%) and substance misuse (25.6%). Psychopharmacological recommendations (made for 81.7%) included clozapine trial (25.6%), clozapine dose change/augmentation (22.0%) and rationalisation of polypharmacy (12.2%). Neuropsychological (73.2%), psychological (39.0%) and psychosocial (85.4%) recommendations included access to cognitive remediation, psychological therapy and disability support. Physical health and substance misuse interventions were recommended for 91.5% and 20.7%, respectively. Conclusions Individuals referred to the TRSP had marked clinical and functional impairments. Holistic collaborative care planning complemented psychopharmacological interventions with psychological, psychosocial and physical healthcare recommendations.

BACKGROUND:There is no universal trigger or tool to aid sepsis diagnosis. OBJECTIVES:The objective of this study was to identify triggers and tools to assist the early detection of sepsis that can be readily implemented across various health care settings. METHODS:A systematic integrative review was conducted using MEDLINE, CINAHL, EMBASE, Scopus, and the Cochrane Database of Systematic Reviews. Relevant grey literature and subject-matter expert consultation also informed the review. Study types included systematic reviews, randomised controlled trials, and cohort studies. All patient populations across prehospital, emergency department, and acute hospital inpatient settings, excluding the intensive care unit, were included. Sepsis triggers and tools were evaluated for efficacy in detecting sepsis and association with process measures and patient outcomes. Methodological quality was appraised using Joanna Briggs Institute tools. RESULTS:Of the 124 included studies, most were retrospective cohort (49.2%) in adults (83.9%) within the emergency department (44.4%). The most commonly evaluated sepsis tools were qSOFA (12 studies) and SIRS (11 studies) with a median sensitivity of 28.0% versus 51.0% and a specificity of 98.0% versus 82.0%, respectively, for sepsis diagnosis. Lactate plus qSOFA (two studies) had a sensitivity between 57.0 and 65.5%, whereas the National Early Warning Score (four studies) demonstrated median sensitivity and specificity >80%, but the latter was considered difficult to implement. Amongst triggers, lactate (18 studies) at the threshold of ≥2.0 mmol/L showed higher sensitivity for predicting sepsis-related clinical deterioration than <2.0 mmol/L. Automated sepsis alerts and algorithms (35 studies) showed median sensitivity between 58.0 and 80.0% and specificity between 60.0 and 93.1%. There were limited data for other sepsis tools and maternal, paediatric, and neonatal populations. Overall methodological quality was high. CONCLUSION:No single sepsis tool or trigger is applicable across various settings and populations, but considering efficacy and ease of implementation, there is evidence to use lactate plus qSOFA for adult patients. More research is needed in maternal, paediatric, and neonatal populations.

Introduction: Intensive care unit clinical research is often implemented by specialised research co-ordinators (RCs). Clinical research activity within Australian and New Zealand intensive care units has escalated, particularly during the COVID-19 pandemic. Growth of the intensive care RC workforce to match research demand is poorly understood. Aim: The aim of this study was to repeat an Intensive Care Research Coordinator Interest Group workforce survey conducted in 2004 and 2009 to describe the current workforce and role satisfaction and also to determine reported symptoms of depression, anxiety, stress, and burnout in Australian and New Zealand intensive care RCs. Methods: In April 2021, an online anonymised survey was distributed to intensive care RCs to complete demographic and workforce questions, the McCloskey/Mueller Satisfaction Scale, the Depression Anxiety Stress Scales-21, and the Maslach Burnout Inventory-Human Services Survey for Medical Personnel. Results: Of 128 Intensive Care Research Coordinator Interest Group eligible members, 98 (77%) completed the survey. Respondents were mainly women (91%), the median age was 47 years, 37% have a postgraduate qualification, and a third have over 10 years of RCC experience (31%). Half do not have permanent employment (52%). The mean Depression Anxiety Stress Scales-21 scores were within the normal range, and respondents reported symptoms of depression (21 [21%]), anxiety (23 [23%]), and stress (26 [27%]). Nearly half of the respondents (44%) exhibited an early symptom of burnout by reporting problematic experiences of work. The overall role satisfaction score was 3.5/5 (neutral; neither satisfied nor dissatisfied). Conclusions: Intensive care RCs are an experienced group of professionals with limited satisfaction in the role. One-fifth of the ICU RCs experienced depression, anxiety, or stress symptoms, with close to half reporting signs of burnout. These results highlight the need to address areas of concern to ensure retention of this specialised intensive care workforce. Crown Copyright (c) 2022 Published by Elsevier Ltd on behalf of Australian College of Critical Care Nurses Ltd. All rights reserved.

BACKGROUND: Sepsis is a global health problem. Limited data exist on the prevalence of sepsis using current definitions in ICUs in India. RESEARCH QUESTION: In adult patients admitted to ICUs in India, what is the prevalence of sepsis using the previous (Second International Consensus Definitions for Sepsis and Septic Shock [Sepsis-2]) and current (Third International Consensus Definitions for Sepsis and Septic Shock [Sepsis-3]) definitions? STUDY DESIGN AND METHODS: Prospective, observational, multicentre, 1-day, cross-sectional study. The primary outcome was the sepsis prevalence using both the Sepsis-2 and Sepsis3 definitions and their concordance (using Cohen's k coefficient). Additional outcomes included reporting on current microbiological characteristics, antimicrobial use, multidrug-resistant infections, and 30-day discharge and mortality status in patients with sepsis. RESULTS: A total of 35 ICUs (85.7% private, 14.3% public) participated, enrolling 680 patients (median age, 60 years [interquartile range, 24 years]; 62.1% men). The most common primary diagnosis was renal disease, and common comorbidities were diabetes (44.0%) and chronic renal failure (11.6%). The sepsis prevalence on the study day was 382 of 677 patients (56.4%). Prevalence by Sepsis-3 and Sepsis-2 definitions was 33.2% and 46.2%, respectively, with minimal concordance (kappa = 0.32). In patients with sepsis, the most common microorganisms were bacterial (77.9%) followed by fungal (14.1%) infections. Approximately 45% of infections were caused by multidrug-resistant organisms. Mortality at 30 days after the study day (27.6% vs 5.3%; P<.01) and rates of discharge against medical advice (12.8% vs 4.9%; P<.01) were significantly higher in the sepsis cohort compared with the cohort without sepsis, respectively. INTERPRETATION: Thismulticenter point prevalence study in Indian ICUs showed a high burden of sepsis using both Sepsis-2 and Sepsis-3 criteria, with associated high rates of antimicrobial resistance and mortality. These findings have implications for public health and future research.

Introduction: Sepsis is life-threatening organ failure that occurs in response to infection, often necessitating multiple interventions within the critical care environment. It causes significant mortality and morbidity, impacting a person's activities and participation. To date there is little research in the areas of communication and swallowing in patients with sepsis identifying the health burden and cost to patients, families and health services.

Background: Critical care healthcare professionals are a key part of any pandemic response and are at an increased risk for physical and psychological harm, yet their self-reported suggestions to ameliorate the negative effects of pandemics on their wellbeing have rarely been sought. Objectives: The objective of this study was to explore and interpret themes of critical care healthcare professionals' responses to the question 'What do you think could assist your wellbeing during the COVID-19 crisis?' Methods: A descriptive study using an online survey, performed in April 2020, investigating pandemic preparedness and psychological burden during the early stages of the COVID-19 pandemic among critical care professionals was carried out. Informal snowball sampling was used. Thematic analysis of qualitative data from an open-ended survey item was informed by Braun and Clark. Findings: Eighty percent (2387/3770) of respondents completed the open-ended survey. Three themes were generated from the synthesis: adequate resourcing for the role; consistent, clear information, and prioritised communications; and the need for genuine kindness and provision of support for healthcare professional wellbeing. Conclusions: There is merit for considering the perceptions, concerns, and suggestions of critical care clinicians during a pandemic. Suggestions included simple measures to maintain physical and mental health, clear messaging, consistent information, trust in health and political leaders, supportive working environments, specific training, and allowances for personal circumstances. This information is important for health and political leaders and policy makers to implement strategies to reduce the burden associated with delivering care in the context of a pandemic. (c) 2021 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

Objective: The aim of the study was to determine whether adjunctive hydrocortisone reduced healthcare expenditure and was cost-effective compared with placebo in New Zealand patients in the Adjunctive Glucocorticoid Therapy in Patients with Septic Shock (ADRENAL) trial.Design: This is a health economic analysis using data linkage to New Zealand Ministry of Health data-bases to determine resource use, costs, and cost-effectiveness for a 24-month period.Setting: The study was conducted in New Zealand. Participants and intervention: Patients with septic shock were randomised to receive a 7-day continuous infusion of 200 mg of hydrocortisone or placebo in the ADRENAL trial.Main outcome measures: Healthcare expenditure was associated with all hospital admissions, emergency department presentations, outpatient visits, and pharmacy expenditure. Effectiveness outcomes included mortality at 6 months and 24 months and quality of life at 6 months. Cost-effectiveness out-comes were assessed with reference to quality-adjusted life years gained at 6 months and life years gained at 24 months.Results: Of 3800 patients in the ADRENAL trial, 419 (11.0%) were eligible, and 405 (96.7% of those eligible) were included. The mean total costs per patient over 24 months were $143,627 +/- 100,890 and $143,772 +/- 97,117 for the hydrocortisone and placebo groups, respectively (p = 0.99). Intensive care unit costs for the index admission were $50,492 and $62,288 per patient for the hydrocortisone and placebo groups, respectively (p = 0.09). The mean number of quality-adjusted life years gained at 6 months and mean number of life years gained at 24 months was not significantly different by treatment group, and the probability of hydrocortisone being cost-effective was 55% at 24 months.Conclusions: In New Zealand, adjunctive hydrocortisone did not reduce total healthcare expenditure or improve outcomes compared with placebo in patients with septic shock. (c) 2021 Australian College of Critical Care Nurses Ltd. Published by Elsevier Ltd. All rights reserved.

Introduction:Australian antenatal care includes specific screening and service provision for domestic and family violence (DFV) and mental health. However, the COVID-19 pandemic resulted in major care changes, including greatly expanded telehealth. Given difficulties in a safe assessment and management of disclosures via telehealth, DFV and mental health service provision might be substantially impacted. This study therefore aimed to assess COVID-19 effects on DFV and mental health screening, as well as broader service provision from the perspective of local maternity service providers.Methods:Mixed-methods study of staff surveys and interviews of staff directly involved in pregnancy care (doctors, midwives, and allied health) in three Sydney (Australia) maternity units, from October 2020 to March 2021. Surveys and interviews interrogated perceived effects of the COVID-19 pandemic on delivery (ensuring required services occurred), timeliness, and quality of (a) overall maternity care and (b) DFV and mental health screening and care; and also advantages and disadvantages of telehealth. Surveys were descriptively analyzed. Interviews were conducted online, recorded, and transcribed verbatim prior to thematic analysis.Results:In total, 17 interviews were conducted and 109 survey responses were received. Breakdown of survey respondents was 67% of midwives, 21% of doctors, and 10% of allied health. Over half of survey respondents felt the pandemic had a negative effect on delivery, timeliness, and quality of overall pregnancy care, and DFV and mental health screening and management. Perceived telehealth positives included convenience for women (73%) and reducing women's travel times (69%). Negative features included no physical examination (90%), difficulty regarding non-verbal cues (84%), difficulty if interpreter required (71%), and unsure if safe to ask some questions (62%). About 50% felt telehealth should continue post-pandemic, but for <25% of visits. Those perceived suitable for telehealth were low-risk and multiparous women, whereas those unsuited were high-risk pregnancy, non-English speaking, and/or mental health/psychosocial/DFV concerns. "Change to delivery of care" was the central interview theme, with subthemes of impact on mental health/DFV screening, telehealth (both positive and negative), staff impact (e.g., continuity of care disruption), and perceived impact on women and partners.Discussion:While telehealth may have an ongoing, post-pandemic role in Australian maternity care, staff believe that this should be limited in scope, mostly for low-risk pregnancies. Women with high risk due to physical health or mental health, DFV, and/or other social concerns were considered unsuited to telehealth.

Abstract Introduction Biomedical progress has facilitated breakthrough advanced neurotherapeutic interventions, whose potential to improve outcomes in rare neurological diseases has increased hope among people with lived experiences and their carers. Nevertheless, gene, somatic cell and other advanced neurotherapeutic interventions carry significant risks. Rare disease patient organizations (RDPOs) may enhance patient experiences, inform expectations and promote health literacy. However, their perspectives are understudied in paediatric neurology. If advanced neurotherapeutics is to optimize RDPO contributions, it demands further insights into their roles, interactions and support needs. Methods We used a mixed‐methodology approach, interviewing 20 RDPO leaders representing paediatric rare neurological diseases and following them up with two online surveys featuring closed and open‐ended questions on advanced neurotherapeutics (19/20) and negative mood states (17/20). Qualitative and quantitative data were analysed using thematic discourse analysis and basic descriptive statistics, respectively. Results Leaders perceived their roles to be targeted at educational provision (20/20), community preparation for advanced neurotherapeutic clinical trials (19/20), information simplification (19/20) and focused research pursuits (20/20). Although most leaders perceived the benefits of collaboration between stakeholders, some cited challenges around collaborative engagement under the following subthemes: conflicts of interest, competition and logistical difficulties. Regarding neurotherapeutics, RDPO leaders identified support needs centred on information provision, valuing access to clinician experts and highlighting a demand for co‐developed, centralized, high‐level and understandable, resources that may improve information exchange. Leaders perceived a need for psychosocial support within themselves and their communities, proposing that this would facilitate informed decision‐making, reduce associated psychological vulnerabilities and maintain hope throughout neurotherapeutic development. Conclusion This study provides insights into RDPO research activities, interactions and resource needs. It reveals a demand for collaboration guidelines, central information resources and psychosocial supports that may address unmet needs and assist RDPOs in their advocacy. Patient or Public Contribution In this study, RDPO leaders were interviewed and surveyed to examine their perspectives and roles in advanced neurotherapeutic development. Some participants sent researchers postinterview clarification emails regarding their responses to questions.