Efficacy of cannabinoids in neurodevelopmental and neuropsychiatric disorders among children and adolescents: a systematic review.

A better understanding of the endocannabinoid system and a relaxation in regulatory control of cannabis globally has increased interest in the medicinal use of cannabinoid-based products (CBP). We provide a systematic review of the rationale and current clinical trial evidence for CBP in the treatment of neuropsychiatric and neurodevelopmental disorders in children and adolescents. A systematic search of MEDLINE, Embase, PsycINFO, and the Cochrane Central Register of Trials was performed to identify articles published after 1980 about CBP for medical purposes in individuals aged 18 years or younger with selected neuropsychiatric or neurodevelopmental conditions. Risk of bias and quality of evidence was assessed for each article. Of 4466 articles screened, 18 were eligible for inclusion, addressing eight conditions (anxiety disorders (n = 1); autism spectrum disorder (n = 5); foetal alcohol spectrum disorder (n = 1); fragile X syndrome (n = 2); intellectual disability (n = 1); mood disorders (n = 2); post-traumatic stress disorder (n = 3); and Tourette syndrome (n = 3)). Only one randomised controlled trial (RCT) was identified. The remaining seventeen articles included one open-label trial, three uncontrolled before-and-after trials, two case series and 11 case reports, thus the risk of bias was high. Despite growing community and scientific interest, our systematic review identified limited and generally poor-quality evidence for the efficacy of CBP in neuropsychiatric and neurodevelopmental disorders in children and adolescents. Large rigorous RCTs are required to inform clinical care. In the meantime, clinicians must balance patient expectations with the limited evidence available.

Toppling television injuries in children and adolescents: a systematic review and meta-analysis.

CONTEXT: Toppling televisions (TVs) are a source of childhood injury but meta-analysis has not assessed the likelihood of TV injuries in children. OBJECTIVE: To present pooled results for injuries, following a systematic review. DATA SOURCES: MEDLINE, Scopus, Google Scholar and EMBASE databases were searched to 5 December 2022. STUDY SELECTION: Included studies met the following criteria: (1) assessed toppling TV injuries in paediatric populations; (2) reported point estimates as an OR or enabled its calculation and (3) used a comparison group. DATA EXTRACTION: A standardised form was used to include information on publication year, study design, population type, country, sample size, mean age, risk factors, point estimates or data used to calculate ORs. RESULTS: A total of 12 803 TV injuries were identified (five studies). Head and neck injuries (OR: 2.13, 95% CI: 1.21 to 3.75) and hospital admission (OR: 2.28, 95% CI: 1.80 to 2.90) were more likely in children aged under 6 years than over 6 years. Conversely, torso injuries were less likely in younger children (OR: 0.60, 95% CI: 0.51 to 0.70). Children under 6 were two and a half times more likely to die or be admitted to an intensive care unit (ICU) as a result of toppling TVs, although this was not statistically significant. Males did not sustain more TV injuries than females. CONCLUSIONS: Children aged under 6 years are more likely to die, sustain head injuries and require hospital treatment from toppling TVs. Strategies for injury prevention must go beyond warning labels to include community education, promotion and use of tip restraint devices, mandatory safety standards and a commitment from manufacturers to improve TV sets stability.

Using the Acute Flaccid Paralysis Surveillance System to Identify Cases of Acute Flaccid Myelitis, Australia, 2000‒2018.

Since 2012, the United States has reported a distinct syndrome of acute flaccid paralysis (AFP) with anterior myelitis, predominantly in children. This polio-like syndrome was termed acute flaccid myelitis (AFM). Australia routinely conducts AFP surveillance to exclude poliomyelitis. We reviewed 915 AFP cases in Australia for children <15 years of age during 2000‒2018 and reclassified a subset to AFM by using the US Council of State and Territorial Epidemiologists case definition. We confirmed 37 AFM cases by using magnetic resonance imaging findings and 4 probable AFM cases on the basis of cerebrospinal fluid pleocytosis. Nonpolio enteroviruses were detected in 33% of AFM cases from which stool samples were tested. Average annual AFM incidence was 0.07 cases/100,000 person-years in children <15 years of age. AFM occurred sporadically in Australia before 2010 but regularly since then, indicating sustained, albeit rare, clinical manifestation in children. The AFP surveillance system in Australia is well-positioned to identify future AFM cases.

Ear Abnormalities Among Children with Fetal Alcohol Spectrum Disorder: A Systematic Review and Meta-Analysis.

OBJECTIVE: To systematically review and conduct meta-analysis on studies that report the type and prevalence of functional and structural ear abnormalities among children with prenatal alcohol exposure and/or fetal alcohol spectrum disorder (FASD). STUDY DESIGN: MEDLINE, PubMed, Embase, Web of Science, PsycINFO, ERIC, CINAHL, and Maternity and Infant Care were searched from 1806 through March 2021. Reference lists of relevant articles were manually searched. Studies reporting on functional and/or structural ear abnormalities among children (<18 years) with prenatal alcohol exposure and/or FASD were eligible. Data extraction and quality assessment were performed by one reviewer and independently checked by another. A random effects meta-analysis was conducted. RESULTS: A total of 31 studies met the inclusion criteria and 25 were included in the meta-analyses, representing a total of 843 children with prenatal alcohol exposure and 1653 children with FASD. Functional ear abnormalities with the highest pooled prevalence were chronic serous otitis media (88.5%; 95% CI, 70.4%-99.3%), abnormal auditory filtering (80.1%; 95% CI, 76.5%-84.3%), and unspecified conductive hearing loss (68.0%; 95% CI, 51.9%-82.2%). Structural ear abnormalities with the highest pooled prevalence were microtia (42.9%; 95% CI, 26.8%-59.7%), railroad track ear (16.8%; 95% CI, 8.1%-27.7%), and misplaced ear (12.3%; 95% CI, 7.6%-17.9%). CONCLUSIONS: Our findings highlight the importance of examining the ears during assessment for FASD, and the need for public health messaging regarding the harms of prenatal alcohol exposure.

Practice change intervention to improve antenatal care addressing alcohol consumption during pregnancy: a randomised stepped-wedge controlled trial.

BACKGROUND: Clinical guideline recommendations for addressing alcohol consumption during pregnancy are sub-optimally implemented and limited evidence exists to inform practice improvements. The aim of this study was to estimate the effectiveness of a practice change intervention in improving the provision of antenatal care addressing alcohol consumption during pregnancy in public maternity services. METHODS: A randomised stepped-wedge controlled trial was undertaken with all public maternity services in three sectors (one urban, two regional/rural) of a single local health district in New South Wales, Australia. All antenatal care providers were subject to a seven-month multi-strategy intervention to support the introduction of a recommended model of care. For 35 months (July 2017 - May 2020) outcome data were collected from randomly selected women post an initial, 27-28 weeks and 35-36 weeks gestation antenatal visit. Logistic regression models assessed intervention effectiveness. RESULTS: Five thousand six hundred ninety-four interviews/online questionnaires were completed by pregnant women. The intervention was effective in increasing women's reported receipt of: assessment of alcohol consumption (OR: 2.63; 95% CI: 2.26-3.05; p < 0.001), advice not to consume alcohol during pregnancy and of potential risks (OR: 2.07; 95% CI: 1.78-2.41; p < 0.001), complete care relevant to alcohol risk level (advice and referral) (OR: 2.10; 95% CI: 1.80-2.44; p < 0.001) and all guideline elements relevant to alcohol risk level (assessment, advice and referral) (OR: 2.32; 95% CI: 1.94-2.76; p < 0.001). Greater intervention effects were found at the 27-28 and 35-36 weeks gestation visits compared with the initial antenatal visit. No differences by sector were found. Almost all women (98.8%) reported that the model of care was acceptable. CONCLUSIONS: The practice change intervention improved the provision of antenatal care addressing alcohol consumption during pregnancy in public maternity services. Future research could explore the characteristics of pregnant women and maternity services associated with intervention effectiveness as well as the sustainment of care practices over time to inform the need for, and development of, further tailored practice change support. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry (Registration number: ACTRN12617000882325; Registration date: 16/06/2017) https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=372985&isReview=true.

Trampoline centre injuries in children and adolescents: a systematic review and meta-analysis.

CONTEXT: No evidence-based review has compared injury risks sustained on trampolines at home and in trampoline centres. OBJECTIVE: To present pooled results for injury type, site and treatment from studies reporting injuries that occurred on trampolines at home and in trampoline centres. DATA SOURCES: MEDLINE, Scopus, Google Scholar and Embase databases were searched to 31 December 2021. STUDY SELECTION: Inclusion criteria: (1) assessment of trampoline injuries (home and trampoline centres); (2) children and adolescents; (3) the point estimate was reported as an odds ratio (OR); and (4) an internal comparison was used. DATA EXTRACTION: Data were reported according to Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) guidelines. A random-effects model was used to estimate effect. RESULTS: There were 1 386 843 injuries (n=11 studies). There was an increased likelihood of musculoskeletal and/or orthopaedic injuries (OR 2.45, 95% CI 1.66 to 3.61, p<0.001), lower extremity injury (OR 2.81, 95% CI 1.99 to 3.97, p<0.001), sprains (OR 1.64, 95% CI 1.36 to 1.97, p<0.001) and a need for surgery (OR 1.89, 95% CI 1.37 to 2.60, p<0.001) at trampoline centres compared with home trampolines. Conversely, upper extremity injury (OR 0.49, 95% CI 0.25 to 0.95, p=0.03), concussion (OR 0.48, 95% CI 0.35 to 0.65, p<0.001) and lacerations (OR 0.46, 95% CI 0.35 to 0.59, p<0.001) were less likely to occur at trampoline centres than at home. CONCLUSIONS: Children using trampoline centres are more likely to suffer severe trauma and require surgical intervention than children using home trampolines. Development and implementation of preventative strategies, public awareness, and mandatory safety standards are urgently required for trampoline centres.

Microcephaly in Australian infants: A retrospective audit.

AIM: To describe clinical characteristics, outcomes and causes of microcephaly in children whose condition was identified within the first year of life. METHODS: Retrospective review of medical records of microcephalic children born between 2008 and 2018 and admitted for any reason during the same period to a tertiary paediatric hospital. Microcephaly was defined as occipitofrontal circumference (OFC) more than two standard deviations below the mean (>-2 SD). RESULTS: Between January 2008 and September 2018, 1083 medical records were retrieved. Of the children, 886 were ineligible and 197 were confirmed cases of microcephaly. Of cases, 73 (37%) had primary microcephaly (at birth) and 72 (37%) had severe microcephaly (OFC > -3 SD). Of microcephalic children, 192 (98%) had congenital anomalies, of whom 93% had major anomalies, mostly cardiovascular or musculoskeletal. Neurological signs or symptoms were reported in 148 (75%), seizures being the most common. Of the 139 children with abnormal central nervous system (CNS) imaging, one or more structural brain abnormalities were identified in 124 (89%). Failure to reach developmental milestones was observed in 69%, visual impairment in 41% and cerebral palsy in 13%. Microcephaly was idiopathic in 51% and 24% had diagnosed genetic disorders. There was no association between developmental outcomes or structural brain anomalies and severity of microcephaly or timing of diagnosis. CONCLUSION: Our results suggest the need for a systematic investigative approach to diagnosis, including a careful history, examination, genetic testing and neuroimaging, to determine the underlying cause of microcephaly, identify co-morbidities, predict prognosis and guide genetic counselling and therapy.

Health-related out-of-pocket expenses for children living with rare diseases - tuberous sclerosis and mitochondrial disorders: A prospective pilot study in Australian families.

AIM: We aimed to describe health-related out-of-pocket (OOP) expenses incurred by Australian families living with children with chronic and complex diseases. METHODS: A prospective pilot study of OOP expenses in families with children with tuberous sclerosis (TS) or mitochondrial disorders (MD) in 2016-2017. An initial survey assessed the family's financial situation, child's health functioning and estimated previous 6 months' and lifetime OOP expenses. Thereafter, families completed a survey each month for 6 months, prospectively tracking OOP expenses. RESULTS: Initial surveys were completed by 13 families with 15 children; median age 7 years (range: 1-12); 5 with MD, 10 with TS. All families reported OOP expenses: 38% paid $2000 per annum, more than double the annual per-capita OOP costs reported for Australia by the Organisation for Economic Co-operation and Development. Eight families estimated $5000-$25 000 in OOP expenses over their child's lifetime and 62% of mothers reduced or stopped work due to caring responsibilities. Eleven families paid annual private health insurance premiums of $2000-$5122, but 72% said this was poor value-for-money. Prospective tracking by eight families (9 children) identified the median OOP expenditure was $863 (range $55-$1398) per family for 6 months. OOP spending was associated with visits to allied health professionals, non-prescription medicines, special foods, supplements and disposable items. Eight families paid for 91 prescription medications over 6 months. CONCLUSION: All families caring for children with TS or MD reported OOP expenses. A larger study is needed to explore the affordability of health care for children living with a broader range of chronic diseases.

Fetal alcohol spectrum disorder resources for educators: A scoping review.

Children with foetal alcohol spectrum disorder (FASD) can experience neurodevelopmental, physical, psychological and behavioural impairments that can result in a disrupted school experience. However, educators often have limited knowledge or experience in the identification and support of students with FASD, and there is a critical need for effective tools and resources to ensure students with FASD are supported in their ongoing learning and development. This scoping review aimed to identify and evaluate publicly available educator resources that aid in the identification, and support of students with FASD in primary/elementary school. In addition, educators and FASD experts were consulted to obtain feedback on currently available resources, and key issues and priorities for FASD resources. In total, 124 resources were identified by searching peer-reviewed and grey literature databases, app stores, podcast services and contacting FASD experts. Information was found on identification (23 resources) and support of students with FASD (119 resources). No resources provided information on the referral. Most resources were average (40%) to good (33%) quality, as measured by a composite tool based on adaptions of the NHMRC FORM Framework and iCAHE Guideline Quality Checklist. A minority of resources had been formally evaluated (7%). Review findings and consultations with experts and educators indicate a critical need for referral guides, evidence-based short-format resources and centralised access for school communities to high-quality resources. Taken together, this study has identified key areas for future resource development and research to better support primary school students with FASD.

Causes and Clinical Features of Childhood Encephalitis: A Multicenter, Prospective Cohort Study.

BACKGROUND: We aimed to determine the contemporary causes, clinical features, and short-term outcome of encephalitis in Australian children. METHODS: We prospectively identified children (≤14 years of age) admitted with suspected encephalitis at 5 major pediatric hospitals nationally between May 2013 and December 2016 using the Paediatric Active Enhanced Disease Surveillance (PAEDS) Network. A multidisciplinary expert panel reviewed cases and categorized them using published definitions. Confirmed encephalitis cases were categorized into etiologic subgroups. RESULTS: From 526 cases of suspected encephalitis, 287 children met criteria for confirmed encephalitis: 57% (95% confidence interval [CI], 52%-63%) had infectious causes, 10% enterovirus, 10% parechovirus, 8% bacterial meningoencephalitis, 6% influenza, 6% herpes simplex virus (HSV), and 6% Mycoplasma pneumoniae; 25% (95% CI, 20%-30%) had immune-mediated encephalitis, 18% acute disseminated encephalomyelitis, and 6% anti-N-methyl-d-aspartate receptor encephalitis; and 17% (95% CI, 13%-21%) had an unknown cause. Infectious encephalitis occurred in younger children (median age, 1.7 years [interquartile range {IQR}, 0.1-6.9]) compared with immune-mediated encephalitis (median age, 7.6 years [IQR, 4.6-12.4]). Varicella zoster virus encephalitis was infrequent following high vaccination coverage since 2007. Thirteen children (5%) died: 11 with infectious causes (2 influenza; 2 human herpesvirus 6; 2 group B Streptococcus; 2 Streptococcus pneumoniae; 1 HSV; 1 parechovirus; 1 enterovirus) and 2 with no cause identified. Twenty-seven percent (95% CI, 21%-31%) of children showed moderate to severe neurological sequelae at discharge. CONCLUSIONS: Epidemic viral infections predominated as causes of childhood encephalitis in Australia. The leading causes include vaccine-preventable diseases. There were significant differences in age, clinical features, and outcome among leading causes. Mortality or short-term neurological morbidity occurred in one-third of cases.

Polio - The old foe and new challenges: An update for clinicians.

The Global Polio Eradication Initiative since 1988 has seen the impact of poliovirus decline from frequent global epidemics in the early 1900s to being now only endemic in two countries today. Global vaccination programmes and surveillance for the disease have resulted in the landmark eradication of two of the three poliovirus strains in the last 5 years. Australia continues to contribute to global surveillance efforts for the disease via the Australian Paediatric Surveillance Unit and the Paediatric Active Enhanced Disease Surveillance Network, which aim to detect cases of acute flaccid paralysis in children, the key clinical feature of poliomyelitis. Today, in the era of the polio 'endgame', there is growing recognition of non-polio enteroviruses causing paralytic diseases that are polio-like, particularly in children, with an increased need for awareness and vigilance by paediatric clinicians.

Barriers to the implementation of clinical guidelines for maternal alcohol consumption in antenatal services: A survey using the theoretical domains framework.

ISSUE ADDRESSED: The aim of this study was to assess potential barriers to the implementation of clinical guideline recommendations regarding maternal alcohol consumption by antenatal clinicians and managers. METHODS: Cross-sectional surveys of antenatal clinicians and managers employed in a New South Wales Local Health District were undertaken. Survey items were developed based on 11 domains of the Theoretical Domains Framework. Consistent with previous studies, a cut point of less than 4 was applied to mean values of survey items (range: 1-5) to identify domains representing barriers to the implementation. RESULTS: Thirty-three antenatal clinicians and eight managers completed the surveys. For clinicians, the domains with the lowest mean values included "environmental context and resources" (ie, complexity of appointments and availability of supporting systems) (mean: 3.13, SD: 0.93); "social influences" (ie, expectations of others that alcohol will be addressed) (mean: 3.33, SD: 0.68); "beliefs about capabilities" (ie, confidence in providing guideline recommendations) (mean: 3.51, SD: 0.67); and "behavioural regulation" (ie, planning and responding to feedback) (mean: 3.53, SD: 0.64). For managers, "emotion regulation" (ie, stress in managing change) (mean: 2.13, SD: 0.64) and "environmental context and resources" (ie, complexities of managing change) (mean: 3.13, SD: 0.83) were the lowest scoring domains. CONCLUSIONS: The antenatal service environment and availability of resources appear to be primary barriers to both clinicians and managers implementing guidelines for maternal alcohol consumption. SO WHAT?: In the development of interventions to support the delivery of clinical guideline recommendations addressing alcohol consumption during pregnancy, a broad range of potential barriers at both the clinician and manager levels need to be considered and targeted by effective implementation strategies.

Antenatal care for alcohol consumption during pregnancy: pregnant women's reported receipt of care and associated characteristics.

BACKGROUND: Antenatal clinical guidelines recommend that during initial and subsequent antenatal visits all pregnant women: have their alcohol consumption assessed; be advised that it is safest not to consume alcohol during pregnancy and of the potential risks of consumption; and be offered referrals for further support if required. However, the extent to which pregnant women attending public antenatal services receive guideline recommended care at these visits, and the characteristics associated with its receipt, is unknown. The purpose of this study was to examine: 1) pregnant women's reported receipt of guideline recommended care addressing alcohol consumption during pregnancy; 2) characteristics associated with the receipt of care; and 3) pregnant women's acceptability of care. METHODS: From July 2017 - February 2018 a survey (telephone or online) was undertaken with 1363 pregnant women who had recently visited a public antenatal service in one health district in Australia. Receipt and acceptability of recommended care were assessed via descriptive statistics and associations via logistic regression analyses. RESULTS: At the initial antenatal visit, less than two thirds (64.3%) of pregnant women reported that they received an assessment of their alcohol consumption and just over one third (34.9%) received advice and referral appropriate to their self-reported level of alcohol consumption since pregnancy recognition. Less than 10% of women received such care at subsequent antenatal visits. Characteristics that significantly increased the odds of receiving all guideline elements at the initial antenatal visit included: less than university attainment (OR = 1.93; 95% CI:1.12, 3.34), not residing in an advantaged area (OR = 2.11; 95% CI:1.17, 3.79), first pregnancy (OR = 1.91; 95% CI:1.22, 2.99) and regional/rural service location (OR = 2.38; 95% CI:1.26, 4.48); and at subsequent visits: younger age (OR = 0.91; 95% CI:0.84, 0.99) and Aboriginal origin (OR = 3.17; 95% CI:1.22, 8.24). Each of the recommended care elements were highly acceptable to pregnant women (88.3-99.4%). CONCLUSIONS: Although care for alcohol consumption is both recommended by clinical guidelines and highly acceptable to pregnant women, its receipt in public antenatal services is suboptimal. There is a need and an opportunity for interventions to support antenatal care providers to routinely and consistently provide such care to all pregnant women.

Review of Aboriginal child health services in remote Western Australia identifies challenges and informs solutions.

BACKGROUND: Despite a national focus on closing the gap between Aboriginal and non-Aboriginal child health outcomes in Australia, there remain significant challenges, including provision of health services in very remote communities. We aimed to identify and map child health services in the very remote Fitzroy Valley, West Kimberley, and document barriers to effective service delivery. METHODS: Identification and review of all regional child health services and staffing in 2013. Verification of data by interview with senior managers and staff of key providers in the Western Australian Country Health Service, Kimberley Population Health Unit, Nindilingarri Cultural Health Services and non-government providers. RESULTS: We identified no document providing a comprehensive overview of child health services in the Fitzroy Valley. There were inadequate numbers of health professionals, facilities and accommodation; high staff turnover; and limited capacity and experience of local health professionals. Funding and administrative arrangements were complex and services poorly coordinated and sometimes duplicated. The large geographic area, distances, extreme climate and lack of public and private transport challenge service delivery. The need to attend to acute illness acts to deprioritise crucial primary and preventative health care and capacity for dealing with chronic, complex disorders. Some services lack cultural safety and there is a critical shortage of Aboriginal Health Workers (AHW). CONCLUSIONS: Services are fragmented and variable and would benefit from a coordinated approach between government, community-controlled agencies, health and education sectors. A unifying model of care with emphasis on capacity-building in Aboriginal community members and training and support for AHW and other health professionals is required but must be developed in consultation with communities. Innovative diagnostic and care models are needed to address these challenges, which are applicable to many remote Australian settings outside the Fitzroy Valley, as well as other countries globally. Our results will inform future health service planning and strategies to attract and retain health professionals to work in these demanding settings. A prospective audit of child health services is now needed to inform improved planning of child health services with a focus on identifying service gaps and training needs and better coordinating existing services to improve efficiency and potentially also efficacy.

Mother-Infant Bonding and Emotional Availability at 12-Months of Age: The Role of Early Postnatal Bonding, Maternal Substance Use and Mental Health.

INTRODUCTION: The quality of the mother-child relationship in the first year of life has far reaching implications across the life course (Bornstein in Annu Rev Psychol 65:121-158, 2014). Yet little is known about predictors of maternal bonding and emotional availability in early infancy. In this study we examined the extent to which postnatal bonding, maternal mental health, and substance use at 8-weeks postpartum predicted mother-infant bonding (self-report) and mother emotional availability (observational) at 12-months of age. METHODS: Data were obtained from an Australian longitudinal cohort study of pregnancy (n = 308). Data were collected during pregnancy, at birth, and postnatally at 8-weeks and 12-months. RESULTS: The results show strong continuity between postnatal bonding at 8-weeks and 12-months. Early postpartum stress and depression were associated with bonding at 12-months; however, the effect did not persist after adjustment for bonding at 8-weeks. Tobacco use at 8-weeks, but no other indicators of mental health, predicted lower emotional availability scores at 12-months. DISCUSSION: Results suggest that the mother's felt bond to her child is stable across the first year of life and that early bonding is a more robust indicator of bonding at 12-months than a mother's mental health or substance use. These findings point to the importance of clinical and public health investments in establishing a strong bond between mother and child in the early postpartum period.

The picture talk project: Aboriginal community input on consent for research.

BACKGROUND: The consent and community engagement process for research with Indigenous communities is rarely evaluated. Research protocols are not always collaborative, inclusive or culturally respectful. If participants do not trust or understand the research, selection bias may occur in recruitment, affecting study results potentially denying participants the opportunity to provide more knowledge and greater understanding about their community. Poorly informed consent can also harm the individual participant and the community as a whole. METHODS: Invited by local Aboriginal community leaders of the Fitzroy Valley, the Kimberley, Western Australia, The Picture Talk project explores the consent process for research. Focus groups of Aboriginal community members were conducted to establish preferences for methods of seeking individual consent. Transcripts were analysed through NVivo10 Qualitative software using grounded theory with inductive and deductive coding. Themes were synthesised with quotes highlighted. RESULTS: Focus groups with Aboriginal community members (n = 6 focus groups of 3-7 participants) were facilitated by a Community Navigator as a cultural guide and interpreter and a researcher. Participants were recruited from all main language groups of the Fitzroy Valley - Gooniyandi, Walmajarri, Wangkatjungka, Bunuba and Nikinya. Participants were aged ≥18 years, with 5 female groups and one male group. Themes identified include: Reputation and trust is essential; The Community Navigator is key; Pictures give the words meaning - milli milli versus Pictures; Achieving consensus in circles; Signing for consent; and Research is needed in the Valley. CONCLUSION: Aboriginal communities of the Fitzroy Valley recommend that researchers collaborate with local leaders, develop trust and foster a good reputation in the community prior to research. Local Aboriginal researchers should be employed to provide cultural guidance throughout the research process and interpret local languages especially for elders. Pictures are preferred to written text to explain research information and most prefer to sign for consent. The Fitzroy Valley welcomes research when collaborative and for the benefit of the community. Future research could include exploring how to support young people, promote health screening and improve understanding of medical knowledge.

Impact of Gastrostomy Placement on Nutritional Status, Physical Health, and Parental Well-Being of Females with Rett Syndrome: A Longitudinal Study of an Australian Population.

OBJECTIVES: To evaluate how age-related trends in nutritional status, physical health, and parental well-being in females with Rett syndrome may be related to gastrostomy placement and to examine the impact of the procedure on mortality. STUDY DESIGN: We included 323 females from the Australian Rett Syndrome Study and analyzed their demographic, genetic, and child and parental health data collected from over 6 waves of follow-up questionnaire between 2000 and 2011. We used mixed-effects models to estimate the association between repeated measures of outcomes and age, gastrostomy placement and their interaction and Cox proportional hazards regression models to estimate relative risks of mortality for individuals with gastrostomy. RESULTS: Nearly one-third (30.3%) of the cases underwent gastrostomy placement. Nutritional status based on weight, height, and body mass index (BMI) improved over time, and BMI was greater in individuals with gastrostomy placement than in those without (adjusted ß = 0.87, 95% CI 0.02-1.73). There was no association between gastrostomy placement and individual's physical health outcomes or parental physical and mental health, nor did the age trend of these outcomes vary by gastrostomy insertion status. Nevertheless, among those at risk of suboptimal weight, the all-cause mortality rate was greater in those who had gastrostomy placement compared with those who had not (hazard ratio 4.07, 95% CI 1.96-8.45). CONCLUSION: Gastrostomy placement was associated with improvement in BMI in females with Rett syndrome, but its long-term impact on individuals and their families is unclear.

The Spectrum and Burden of Influenza-Associated Neurological Disease in Children: Combined Encephalitis and Influenza Sentinel Site Surveillance From Australia, 2013-2015.

Background: There are few longitudinal studies of seasonal influenza-associated neurological disease (IAND) and none from the Southern Hemisphere. Methods: We extracted prospectively acquired Australian surveillance data from 2 studies nested within the Paediatric Active Enhanced Disease Surveillance (PAEDS) network: the Influenza Complications Alert Network (FluCAN) study and the Australian Childhood Encephalitis (ACE) study between 2013 and 2015. We described the clinical features and severity of IAND in children, including influenza-associated encephalitis/encephalopathy (IAE). We calculated the proportion of hospitalized influenza that is associated with IAND and IAE, and incidence of IAE. Results: Over 3 influenza seasons, we identified 54 cases of IAND at 2 tertiary children's hospitals from Australia that accounted for 7.6% of hospitalized influenza. These included 10 cases of IAE (1.4% hospitalized influenza). The mean annual incidence of IAE among Australian children (aged ≤14 years) was 2.8 per 1000000. The spectrum of IAND was broad and included IAE (n = 10) including distinct acute encephalopathy syndromes, simple febrile seizures (n = 14), other seizures (n = 16), acute ataxia (n = 4), and other subacute syndromes (transverse myelitis [n = 1], opsoclonus myoclonus [n = 1]). Two-thirds of children with IAND were aged ≤4 years; less than half had preexisting neurological disease or other risk factors for severe influenza. IAE caused death or neurological morbidity in half of cases. Conclusions: Seasonal influenza is an important cause of acute neurological disease in Australian children. The spectrum of seasonal IAND appears similar to that described during the 2009 H1N1 pandemic. IAE is associated with high morbidity and mortality.