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BACKGROUND: Maternal and paternal perinatal depression and anxiety are theorised to adversely impact infant development. Yet, few studies have assessed both mental health symptoms and clinical diagnoses within the one study. Moreover, research on fathers is limited. This study therefore aimed to examine the association between symptoms and diagnoses of maternal and paternal perinatal depression and anxiety with infant development. METHOD: Data were from the Triple B Pregnancy Cohort Study. Participants included 1539 mothers and 793 partners. Depressive and anxiety symptoms were assessed using the Edinburgh Postnatal Depression Scale and Depression Anxiety Stress Scales. Major depressive disorder, generalized anxiety disorder, social anxiety disorder, panic disorder, and agoraphobia were assessed using the Composite International Diagnostic Interview in trimester three. Infant development was assessed at 12-months using the Bayley Scales of Infant and Toddler Development. RESULTS: Antepartum, maternal depressive and anxiety symptoms were associated with poorer infant social-emotional (d = -0.11, p = .025) and language development (d = -0.16, p = .001). At 8-weeks postpartum, maternal anxiety symptoms were associated with poorer overall development (d = -0.11, p = .030). No association was observed for clinical diagnoses in mothers, nor paternal depressive and anxiety symptoms or clinical diagnoses; albeit risk estimates were largely in the expected direction of adverse effects on infant development. CONCLUSIONS: Evidence suggests that maternal perinatal depression and anxiety symptoms may adversely impact infant development. Effects were small but findings underscore the importance of prevention, early screening and intervention, alongside consideration of other risk factors during early critical periods.

Accurate information on dose, frequency and timing of maternal alcohol consumption is critically important when investigating fetal risks from prenatal alcohol exposure. Identification of distinct alcohol use behaviours can also assist in developing directed public health messages about possible adverse child outcomes, including Fetal Alcohol Spectrum Disorder. We aimed to determine group-based trajectories of time-specific, unit-level, alcohol consumption using data from 1458 pregnant women in the Asking Questions about Alcohol in Pregnancy (AQUA) longitudinal study in Melbourne, Australia. Six alcohol consumption trajectories were identified incorporating four timepoints across gestation. Labels were assigned based on consumption in trimester one and whether alcohol use was continued throughout pregnancy: abstained (33.8%); low discontinued (trimester one) (14.4%); moderate discontinued (11.7%); low sustained (13.0%); moderate sustained (23.5%); and high sustained (3.6%). Median weekly consumption in trimester one ranged from 3 g (low discontinued) to 184 g of absolute alcohol (high sustained). Alcohol use after pregnancy recognition decreased dramatically for all sustained drinking trajectories, indicating some awareness of risk to the unborn child. Further, specific maternal characteristics were associated with different trajectories, which may inform targeted health promotion aimed at reducing alcohol use in pregnancy.

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.

PURPOSE: The Asking Questions about Alcohol in Pregnancy (AQUA) study, established in 2011, is a prebirth cohort of 1570 mother and child pairs designed to assess the effects of low to moderate prenatal alcohol exposure and sporadic binge drinking on long-term child development. Women attending general antenatal clinics in public hospitals in Melbourne, Australia, were recruited in their first trimester, followed up three times during pregnancy and at 12 and 24 months postpartum. The current follow-up of the 6-8-year-old children aims to strengthen our understanding of the relationship between these levels of prenatal alcohol exposure and neuropsychological functioning, facial dysmorphology, brain structure and function. PARTICIPANTS: Between June 2018 and April 2021, 802 of the 1342 eligible AQUA study families completed a parent-report questionnaire (60%). Restrictions associated with COVID-19 pandemic disrupted recruitment, but early school-age neuropsychological assessments were undertaken with 696 children (52%), and 482 (36%) craniofacial images were collected. A preplanned, exposure-representative subset of 146 children completed a brain MRI. An existing biobank was extended through collection of 427 (32%) child buccal swabs. FINDINGS TO DATE: Over half (59%) of mothers consumed some alcohol during pregnancy, with one in five reporting at least one binge-drinking episode prior to pregnancy recognition. Children's craniofacial shape was examined at 12 months of age, and low to moderate prenatal alcohol exposure was associated with subtle midface changes. At 2 years of age, formal developmental assessments showed no evidence that cognitive, language or motor outcome was associated with any of exposure level. FUTURE PLANS: We will investigate the relationship between prenatal alcohol exposure and specific aspects of neurodevelopment at 6-8 years, including craniofacial shape, brain structure and function. The contribution of genetics and epigenetics to individua

BACKGROUND AND AIMS: Alcohol consumption is common in adolescence and young adulthood and may continue into pregnancy, posing serious risk to early fetal development. We examine the frequency of periconception alcohol use (prior to pregnancy awareness) and the extent to which adolescent and young adult alcohol use prospectively predict periconception use. DESIGN: A longitudinal, population-based study. SETTING: Victoria, Australia. PARTICIPANTS: A total of 289 women in trimester three of pregnancy (age 29-35 years; 388 pregnancies). MEASURES: The main exposures were binge [≥ 4.0 standard drinks (SDs)/day] and frequent (≥ 3 days/week) drinking in adolescence (mean age = 14.9-17.4 years) and young adulthood (mean age 20.7-29.1 years). Outcomes were frequency (≥ 3 days/week, ≥ monthly, never) and quantity (≥ 4.0 SDs, ≥ 0.5 and < 4.0 SDs, none) of periconception drinking. FINDINGS: Alcohol use was common in young adulthood prior to pregnancy (72%) and in the early weeks of pregnancy (76%). The proportions drinking on most days and binge drinking were similar at both points. Reflecting a high degree of continuity in alcohol use behaviours, most women who drank periconceptionally had an earlier history of frequent (77%) and/or binge (85%) drinking throughout the adolescent or young adult years. Young adult binge drinking prospectively predicted periconception drinking quantity [odds ratio (OR) = 3.7, 95% confidence interval (CI) = 1.9-7.4], compared with women with no prior history. Similarly, frequent young adult drinking prospectively predicted frequent periconception drinking (OR = 30.7, 95% CI = 12.3-76.7). CONCLUSIONS: Women who engage in risky (i.e. frequent and binge) drinking in their adolescent and young adult years are more likely to report risky drinking in early pregnancy prior to pregnancy recognition than women with no prior history of risky drinking.

The current study examined associations between preconception diagnoses of major depressive disorder (MDD) and anxiety disorders in adolescence and young adulthood and perinatal depression and anxiety symptoms in early fatherhood. In an Australian community cohort study of health and development, earlier history of MDD and anxiety disorders (extending back to adolescence) were assessed retrospectively in the third trimester of pregnancy via the Composite International Diagnostic Interview. Paternal perinatal depression and anxiety were then assessed prospectively over three timepoints (third trimester of pregnancy, 8 weeks and 12 months postpartum), using established cut-points on the Edinburgh Postnatal Depression Scale and the Depression Anxiety Stress Scales (anxiety subscale). Mixed-effects regression models examined risk associations between preconception diagnoses of MDD and anxiety disorders, and perinatal depression and anxiety symptoms at each timepoint, adjusting for socio-demographic factors and concurrent maternal mental health difficulties. The odds of clinically concerning levels of paternal perinatal depression and anxiety were 6-fold and 4-fold higher, respectively, in men with a preconception history of MDD. The odds of perinatal depression were 3-fold higher in men with a preconception history of an anxiety disorder. Less evidence was found for an association between preconception diagnoses of an anxiety disorder and perinatal anxiety in fathers. Interventions aimed at improving mental health in men during adolescence and young adulthood may promote continued psychological health in men during early fatherhood.

BACKGROUND: Clinical guideline recommendations for addressing modifiable risk factors are not routinely implemented into preconception and antenatal care. This review assessed the effectiveness of implementation strategies in improving health professional provision of preconception and antenatal care addressing tobacco smoking, weight management and alcohol consumption. METHODS: A systematic review of randomised and non-randomised studies with a parallel comparison group was conducted. Eligible studies used implementation strategy/ies targeted at health professionals to improve at least one element of preconception and/or antenatal care (smoking: ask, advise, assess, assist, arrange; weight/alcohol: assess, advise, refer) compared to usual practice/control or alternative strategies. Eligible studies were identified via CENTRAL, MEDLINE, EMBASE, Maternity and Infant Care, CINAHL and other sources. Random-effects meta-analyses were conducted where appropriate, with other findings summarised using the direction of effect. The certainty of the pooled evidence was assessed using the GRADE approach. RESULTS: Fourteen studies were included in the review. Thirteen were in the antenatal period and 12 tested multiple implementation strategies (median: three). Meta-analyses of RCTs found that implementation strategies compared to usual practice/control probably increase asking (OR: 2.52; 95% CI: 1.13, 5.59; 3 studies; moderate-certainty evidence) and advising (OR: 4.32; 95% CI: 3.06, 6.11; 4 studies; moderate-certainty evidence) about smoking and assessing weight gain (OR: 57.56; 95% CI: 41.78, 79.29; 2 studies; moderate-certainty evidence), and may increase assessing (OR: 2.55; 95% CI: 0.24, 27.06; 2 studies; low-certainty evidence), assisting (OR: 6.34; 95% CI: 1.51, 26.63; 3 studies; low-certainty evidence) and arranging support (OR: 3.55; 95% CI: 0.50, 25.34; 2 studies; low-certainty evidence) for smoking. The true effect of implementation strategies in increasing advice a

Background: Binge-level prenatal alcohol exposure (PAE) causes developmental abnormalities, which may be mediated in part by epigenetic mechanisms. Despite this, few studies have characterised the association of binge PAE with DNA methylation in offspring. Methods: We investigated the association between binge PAE and genome-wide DNA methylation profiles in a sex-specific manner in neonatal buccal and placental samples. Results: We identified no differentially methylated CpGs or differentially methylated regions (DMRs) at false discovery rate <0.05. However, using a sum-of-ranks approach, we identified a DMR in each tissue of female offspring. The DMR identified in buccal samples is located near regions with previously-reported associations to fetal alcohol spectrum disorder (FASD) and binge PAE. Conclusion: Our findings warrant further replication and highlight a potential epigenetic link between binge PAE and FASD.

For 27 years, national prospective data on selected rare childhood diseases have been collected monthly by the Australian Paediatric Surveillance Unit (APSU) from paediatricians and other clinical specialists who report cases in children aged up to 16 years. We report here the annual results of APSU surveillance in 2020 for ten rare communicable diseases and complications of communicable diseases, namely: acute flaccid paralysis (AFP); congenital cytomegalovirus (CMV) infection; neonatal herpes simplex virus (HSV) infection; perinatal exposure to human immunodeficiency virus (HIV); paediatric HIV infection; severe complications of seasonal influenza; juvenile onset recurrent respiratory papillomatosis (JoRRP); congenital rubella syndrome; congenital varicella syndrome; and neonatal varicella infection. We describe the results for each disease in the context of the total period of study, including demographics, clinical characteristics, treatment and short-term outcomes. Despite challenges presented by the coronavirus disease 2019 (COVID-19) pandemic in 2020, more than 1,400 paediatricians reported regularly to the APSU and an overall monthly reporting rate of > 90% was achieved. The minimum AFP target of 1 case per 100,000 children aged less than 15 years was achieved and there were few cases of vaccine-preventable diseases (JoRRP, rubella, varicella). However, high cases of congenital CMV, neonatal HSV and perinatal exposure to HIV persist. There were no severe complications of seasonal influenza reported for the first time in 13 years. This is consistent with other surveillance data reporting a decline of influenza and other communicable diseases in 2020, and likely reflects the wider effects of public health measures to reduce transmission of SARS-CoV-2 in the Australian community.

The Australian Paediatric Surveillance Unit (APSU) has been prospectively collecting national data on rare childhood conditions since 1993, with monthly reporting of cases by paediatricians. In this report we describe annual results from studies for ten communicable diseases and complications of communicable diseases that were conducted using APSU surveillance in 2019 and place these in an historic context. Results are reported on acute flaccid paralysis, congenital cytomegalovirus infection, neonatal herpes simplex virus infection, perinatal exposure to HIV, paediatric HIV infection, severe complications of seasonal influenza, juvenile onset recurrent respiratory papillomatosis (JoRRP), congenital rubella syndrome, congenital varicella syndrome and neonatal varicella infection. APSU provides rich clinical data to complement data collected from other surveillance systems and to improve understanding and response to rare childhood infections.

BACKGROUND: Despite existing best practice care recommendations for addressing tobacco smoking, alcohol consumption and weight management in preconception and antenatal care, such recommendations are often not implemented into routine practice. Effective strategies that target known barriers to implementation are key to reducing this evidence to practice gap. The aim of this review is to synthesise the evidence on the effectiveness of implementation strategies in improving the provision of preconception and antenatal care for these modifiable risk factors. METHODS: Randomised and non-randomised study designs will be eligible for inclusion if they have a parallel control group. We will include studies that either compare an implementation strategy to usual practice or compare two or more strategies. Participants may include any health service providing preconception or antenatal care to women and/or the health professionals working within such a service. The primary outcome will be any measure of the effectiveness of implementation strategies to improve preconception and/or antenatal care for tobacco smoking, alcohol consumption and/or weight management (including care to improve nutrition and/or physical activity). Secondary outcomes will include the effect of the implementation strategy on women's modifiable risk factors, estimates of absolute costs or cost-effectiveness and any reported unintentional consequences. Eligible studies will be identified via searching Cochrane Central Register of Controlled Trials, MEDLINE, EMBASE, Maternity and Infant Care, CINAHL, ProQuest Dissertations and Theses and other sources (e.g. contacting experts in the field). Study selection, data extraction and risk of bias will be assessed independently by two review authors and differences resolved by a third reviewer. If data permits, we will conduct fixed-effects or random-effects meta-analysis where appropriate. If studies do not report the same outcome or there is significant heter

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

Background Mother-infant bonding provides the foundation for secure attachment through the lifespan and organizes many facets of infant social-emotional development, including later parenting. Aims To describe maternal bonding to offspring across the pregnancy and postnatal periods, and to examine a broad range of sociodemographic and psychosocial predictors of the maternal-offspring bond. Methods Data were drawn from a sample of 372 pregnant women participating in an Australian population-based longitudinal study of postnatal health and development. Participants completed maternal bonding questionnaires at each trimester and 8 weeks postnatal. Data were collected on a range of sociodemographic and psychosocial factors. Results Bonding increased significantly through pregnancy, in quality and intensity. Regression analyses indicated that stronger antenatal bonding at all time points (trimesters 1 through 3) predicted stronger postnatal bonding. Older maternal age, birth mother being born in a non-English speaking country, mother not working full time, being a first-time mother, breast-feeding problems, and baby's crying behavior all predicted poorer bonding at 8 weeks postpartum. Conclusion These novel findings have important implications for pregnant women and their infant offspring, and for health care professionals working in perinatal services. Importantly, interventions to strengthen maternal-fetal bonding would be beneficial during pregnancy to enhance postnatal bonding and infant health outcomes.

BACKGROUND: Children and families living with rare disease often experience significant health, psychosocial, economic burdens and diagnostic delays. Experiences appear to be constant, regardless of the specific rare disease diagnosis. Systematically collected Australian data to support policy response on rare diseases are scarce. We address this gap by providing survey results about 462 children aged <19 years living with approximately 200 different rare diseases. RESULTS: Of 462 children, 96% were born in Australia, 55% were male, median age was 8.9 years (0-18.2). Four-hundred-and-twenty-eight (93%) had received a definitive diagnosis but 29 (7%) remained undiagnosed. Before receiving the correct diagnosis 38% consulted ≥ 6 different doctors. Among those with a diagnosis, 37% believed the diagnosis was delayed and 27% initially received a wrong diagnosis. Consequences of delayed diagnosis include anxiety, loss of reproductive confidence because of an ill-defined genetic risk, frustration and stress (54%), disease progression (37%), delays in treatment (25%) and inappropriate treatments (10%). Perceived reasons for diagnostic delays included lack of knowledge about the disease among health professionals (69.2%), lack of symptom awareness by the family (21.2%) and difficulties accessing tests (17.9%). Children with inborn errors of metabolism were less likely to have a delayed diagnosis compared with other disease groups (Chi-Sq = 17.1; P < 0.0001), most likely due to well-established and accessible biochemical screening processes. Diagnosis was given in person in 74% of cases, telephone in 18.5% and via a letter in 3.5%. Some families (16%) were dissatisfied with the way the diagnosis was delivered, citing lack of empathy and lack of information from health professionals. Psychological support at diagnosis was provided to 47.5%, but 86.2% believed that it should always be provided. Although 74.9% of parents believed that the diagnosis could have an impact on futur

INTRODUCTION AND AIMS: There is limited research regarding the effects of alcohol consumption by breastfeeding mothers on infant development. This study examined the frequency, correlates and outcomes of alcohol use during lactation. DESIGN AND METHODS: Data were from an Australian cohort study. Maternal demographics and substance use were assessed during pregnancy and at 8 weeks and 12 months postpartum. Breastfeeding duration, infant feeding, sleeping and development (Ages and Stages Questionnaire) were also assessed postpartum. Logistic regression and general linear model analyses examined characteristics of women who drank during breastfeeding, and the association between alcohol use during breastfeeding and infant outcomes. RESULTS: Alcohol use was reported by 60.7% and 69.6% of breastfeeding women at 8 weeks and 12 months postpartum, respectively. Breastfeeding women who consumed alcohol were more likely to be born in Australia or another English-speaking country, be tertiary educated and have higher household incomes. Most drank at low levels (≤14 standard drinks per week, <3 per occasion) and employed strategies (e.g. timing of alcohol use) to minimise alcohol passed onto infants via breastmilk. Alcohol consumption was unrelated to breastfeeding duration, infant feeding and sleeping behaviour at 8 weeks, and most infant developmental outcomes at 8 weeks or 12 months, after adjusting for confounders. The only significant association showed that infants whose mothers drank at 8 weeks postpartum had more favourable results for personal-social development at 12 months compared with those whose mothers abstained. DISCUSSION AND CONCLUSIONS: Low level drinking during breastfeeding is not linked with shorter breastfeeding duration or adverse outcomes in infants up to 12 months of age. [Wilson J, Tay RY, McCormack C, Allsop S, Najman J, Burns L, Olsson CA, Elliott E, Jacobs S, Mattick RP, Hutchinson D. Alcohol consumption by breastfeeding mothers: Frequency, correla

AIM: Influenza causes a large burden of disease in children. Point-of-care testing (POCT) can rapidly diagnose influenza with the potential to reduce investigation and hospital admission rates, but information on its use in an Australian setting is limited. METHODS: Through a retrospective review of laboratory-confirmed influenza cases presenting at a paediatric emergency department (ED) in 2009, we evaluated children diagnosed by POCT versus standard testing (direct fluorescent antibody, polymerase chain reaction or viral culture) and assessed differences in investigations, admission requirements, length-of-stay (LOS) in ED/hospital and antibiotic/antiviral prescription. The rate of serious bacterial infection was examined. RESULTS: Compared with standard testing (n = 65), children diagnosed by positive POCT (n = 236) had a shorter median hospital LOS by 1 day (P = 0.006), increased antiviral prescription (odds ratio 3.31, P < 0.001) and a reduction in the time to influenza diagnosis (2.4 vs. 24.4 h, P < 0.001); however, a negative POCT result (n = 63) resulted in delayed diagnosis (44.0 h, P = 0.001). POCT did not decrease LOS in ED. Interpretation of reductions in admission and investigations with POCT may be limited by possible confounding. Approximately 4% of influenza patients had a serious bacterial infection; urinary tract infections were commonest (2.7%), but no cerebrospinal fluid cultures were positive. A single positive blood culture was seen among 332 immunocompetent influenza patients. CONCLUSIONS: Influenza diagnosis by POCT was quicker and reduced LOS of hospitalised children, whereas negative results delayed diagnosis. Negative POCT should not alter usual investigations if influenza remains suspected. A controlled prospective study during the influenza season is needed to clarify the direct benefits of POCT.

The emotional bond that a mother feels towards her baby is critical to social, emotional and cognitive development. Maternal health and wellbeing through pregnancy and antenatal bonding also play a key role in determining bonding postnatally, but the extent to which these relationships may be disrupted by poor mental health or substance use is unclear. This study aimed to examine the extent to which mother-fetal bonding, substance use and mental health through pregnancy predicted postnatal mother-infant bonding at 8 weeks. Participants were 372 women recruited from three metropolitan hospitals in Australia. Data was collected during trimesters one, two and three of pregnancy and 8 weeks postnatal using the Maternal Antenatal Attachment Scale (MAAS), Maternal Postnatal Attachment Scale (MPAS), the Edinburgh Antenatal and Postnatal Depression Scale (EPDS), the Depression and Anxiety Scales (DASS-21), frequency and quantity of substance use (caffeine, alcohol and tobacco) as well as a range of demographic and postnatal information. Higher antenatal bonding predicted higher postnatal bonding at all pregnancy time-points in a fully adjusted regression model. Maternal depressive symptoms in trimesters two and three and stress in trimester two were inversely related to poorer mother-infant bonding 8 weeks postnatally. This study extends previous work on the mother's felt bond to her developing child by drawing on a large sample of women and documenting the pattern of this bond at three time points in pregnancy and at 8 weeks postnatally. Utilising multiple antenatal waves allowed precision in isolating the relationships in pregnancy and at key intervention points. Investigating methods to enhance bonding and intervene in pregnancy is needed. It is also important to assess maternal mental health through pregnancy.

Rett syndrome is one of many severe neurodevelopmental disorders with feeding difficulties. In this study, associations between feeding difficulties, age, MECP2 genotype, and utilization of gastrostomy were investigated. Weight change and family satisfaction following gastrostomy were explored. Data from the longitudinal Australian Rett Syndrome Database whose parents provided data in the 2011 family questionnaire (n=229) were interrogated. We used logistic regression to model relationships between feeding difficulties, age group, and genotype. Content analysis was used to analyze data on satisfaction following gastrostomy. In those who had never had gastrostomy and who fed orally (n=166/229), parents of girls<7 years were more concerned about food intake compared with their adult peers (odds ratio [OR] 4.26; 95% confidence interval [CI] 1.29, 14.10). Those with a p.Arg168 mutation were often perceived as eating poorly with nearly a 6-fold increased odds of choking compared to the p.Arg133Cys mutation (OR 5.88; 95% CI 1.27, 27.24). Coughing, choking, or gagging during meals was associated with increased likelihood of later gastrostomy. Sixty-six females (28.8%) had a gastrostomy, and in those, large MECP2 deletions and p.Arg168 mutations were common. Weight-for-age z-scores increased by 0.86 (95% CI 0.41, 1.31) approximately 2 years after surgery. Families were satisfied with gastrostomy and felt less anxious about the care of their child. Mutation type provided some explanation for feeding difficulties. Gastrostomy assisted the management of feeding difficulties and poor weight gain, and was acceptable to families. Our findings are likely applicable to the broader community of children with severe disability.

BACKGROUND: Fetal alcohol spectrum disorder (FASD) is known to be under-recognised in Australia. The use of standard methods to identify when to refer individuals who may have FASD for specialist assessment could help improve the identification of this disorder. The purpose of this study was to develop referral criteria for use in Australia. METHOD: An online survey about FASD screening and diagnosis in Australia, which included 23 statements describing criteria for referral for fetal alcohol syndrome (FAS) and FASD based on published recommendations for referral in North America, was sent to 139 health professionals who had expertise or involvement in FASD screening or diagnosis. Survey findings and published criteria for referral were subsequently reviewed by a panel of 14 investigators at a consensus development workshop where criteria for referral were developed. RESULTS: Among the 139 health professionals who were sent the survey, 103 (74%) responded, and 90 (65%) responded to the statements on criteria for referral. Over 80% of respondents agreed that referral for specialist evaluation should occur when there is evidence of significant prenatal alcohol exposure, defined as 7 or more standard drinks per week and at least 3 standard drinks on any one day, and more than 70% agreed with 13 of the 16 statements that described criteria for referral other than prenatal alcohol exposure. Workshop participants recommended five independent criteria for referral: confirmed significant prenatal alcohol exposure; microcephaly and confirmed prenatal alcohol exposure; 2 or more significant central nervous system (CNS) abnormalities and confirmed prenatal alcohol exposure; 3 characteristic FAS facial anomalies; and 1 characteristic FAS facial anomaly, growth deficit and 1 or more CNS abnormalities. CONCLUSION: Referral criteria recommended for use in Australia are similar to those recommended in North America. There is a need to develop resources to raise awareness of these c

BACKGROUND: There are few large-scale, prospective studies of influenza A(H1N1)pdm09 in children that identify predictors of adverse outcomes. OBJECTIVES: We aimed to examine clinical epidemiology and predictors for adverse outcomes in children hospitalised with influenza A(H1N1)pdm09 in Australia. METHODS: Active hospital surveillance in six tertiary paediatric referral centres (June-September, 2009). All children aged <15 years admitted with laboratory-confirmed influenza A(H1N1)pdm09 were studied. RESULTS: Of 601 children admitted with laboratory-confirmed influenza, 506 (84·2%) had influenza A(H1N1)pdm09. Half (51·0%) of children with influenza A(H1N1)pdm09 were previously healthy. Hospital stay was longer in children with pre-existing condition (mean 6·9 versus 4·9 days; P = 0·02) as was paediatric intensive care unit (PICU) stay (7·0 versus 2·3 days; P = 0·005). Rapid diagnosis decreased both antibiotic use and length of hospital and PICU stay. Fifty (9·9%) children were admitted to a PICU, 30 (5·9%) required mechanical ventilation and 5 (0·9%) died. Laboratory-proven bacterial co-infection and chronic lung disease were significant independent predictors of PICU admission (OR 6·89, 95% CI 3·15-15·06 and OR 3·58, 95% CI 1·41-9·07, respectively) and requirement for ventilation (OR 5·61, 95% CI 2·2-14·28 and OR 5·18, 95% CI 1·8-14·86, respectively). Chronic neurological disease was a predictor of admission to PICU (OR 2·30, 95% CI 1·14-4·61). CONCLUSIONS: During the 2009 pandemic, influenza was a major cause of hospitalisation in tertiary paediatric hospitals. Co-infection and underlying chronic disease increased risk of PICU admission and/or ventilation. Half the children admitted were previously healthy, supporting a role for universal influenza vaccination in children.

BACKGROUND: Fetal alcohol spectrum disorders (FASD) are underdiagnosed in Australia, and health professionals have endorsed the need for national guidelines for diagnosis. The aim of this study was to develop consensus recommendations for the diagnosis of FASD in Australia. METHODS: A panel of 13 health professionals, researchers, and consumer and community representatives with relevant expertise attended a 2-day consensus development workshop to review evidence on the screening and diagnosis of FASD obtained from a systematic literature review, a national survey of health professionals and community group discussions. The nominal group technique and facilitated discussion were used to review the evidence on screening and diagnosis, and to develop consensus recommendations for the diagnosis of FASD in Australia. RESULTS: The use of population-based screening for FASD was not recommended. However, there was consensus support for the development of standard criteria for referral for specialist diagnostic assessment. Participants developed consensus recommendations for diagnostic categories, criteria and assessment methods, based on the adaption of elements from both the University of Washington 4-Digit Diagnostic Code and the Canadian guidelines for FASD diagnosis. Panel members also recommended the development of resources to: facilitate consistency in referral and diagnostic practices, including comprehensive clinical guidelines and assessment instruments; and to support individuals undergoing assessment and their parents or carers. CONCLUSIONS: These consensus recommendations provide a foundation for the development of guidelines and other resources to promote consistency in the diagnosis of FASD in Australia. Guidelines for diagnosis will require review and evaluation in the Australian context prior to national implementation as well as periodic review to incorporate new knowledge.

BACKGROUND: Australia's commitment to consumer and community participation in health and medical research has grown over the past decade. Participatory research models of engagement are the most empowering for consumers. METHODS: As part of a project to develop a diagnostic instrument for fetal alcohol spectrum disorders (FASD) in Australia (FASD Project), the Australian FASD Collaboration (Collaboration), including a consumer advocate and two consumer representatives, was established. On completion of the FASD Project an on-line survey of Collaboration members was conducted to assess their views on consumer involvement. Women in the community were also invited to participate in Community Conversations to discuss real life situations regarding communications with health professionals about alcohol and pregnancy. Community Conversation feedback was analysed qualitatively and attendees were surveyed about their views of the Community Conversation process. RESULTS: The on-line survey was completed by 12 members of the Collaboration (71%). Consumer and community participation was considered important and essential, worked well, and was integral to the success of the project. The 32 women attending the Community Conversations generated 500 statements that made reference to prevention, how information and messages are delivered, and appropriate support for women. Nearly all the attendees at the Community Conversations (93%) believed that they had an opportunity to put forward their ideas and 96% viewed the Community Conversations as a positive experience. CONCLUSIONS: The successful involvement of consumers and the community in the FASD Project can be attributed to active consumer and community participation, which included continued involvement throughout the project, funding of participation activities, and an understanding of the various contributions by the Collaboration members.

BACKGROUND: The clinical presentation of influenza in infancy may be similar to serious bacterial infection and be investigated with invasive procedures like lumbar puncture (LP), despite very limited evidence that influenza occurs concomitantly with bacterial meningitis, perhaps because the diagnosis of influenza is very often not established when the decision to perform LP is being considered. METHODS: A retrospective medical record review was undertaken in all children presenting to the Children's Hospital at Westmead, Sydney, Australia, in one winter season with laboratory-confirmed influenza or other respiratory virus infections (ORVIs) but excluding respiratory syncytial virus, to compare the use of, and reflect on the need for, the performance of invasive diagnostic procedures, principally LP, but also blood culture, in influenza and non-influenza cases. We also determined the rate of concomitant bacterial meningitis or bacteraemia. FINDINGS: Of 294 children, 51% had laboratory-confirmed influenza and 49% had ORVIs such as parainfluenza viruses (34%) and adenoviruses (15%). Of those with influenza, 18% had a LP and 71% had a blood culture performed compared with 6·3% and 55·5% in the ORVI group (for both P<0·01). In multivariate analysis, diagnosis of influenza was a strong independent predictor of both LP (P=0·02) and blood culture (P=0·05) being performed, and, in comparison with ORVIs, influenza cases were almost three times more likely to have a LP performed on presentation to hospital. One child with influenza (0·9%) had bacteraemia and none had meningitis. INTERPRETATION: Children with influenza were more likely to undergo LP on presentation to hospital compared with those presenting with ORVIs. If influenza is confirmed on admission by near-patient testing, clinicians may be reassured and less inclined to perform LP, although if meningitis is clinically suspected, the clinician should act accordingly. We found that the risk of bacterial meningitis and

BACKGROUND: There is little reliable information on the prevalence of fetal alcohol spectrum disorders (FASD) in Australia and no coordinated national approach to facilitate case detection. The aim of this study was to identify health professionals' perceptions about screening for FASD in Australia. METHOD: A modified Delphi process was used to assess perceptions of the need for, and the process of, screening for FASD in Australia. We recruited a panel of 130 Australian health professionals with experience or expertise in FASD screening or diagnosis. A systematic review of the literature was used to develop Likert statements on screening coverage, components and assessment methods which were administered using an online survey over two survey rounds. RESULTS: Of the panel members surveyed, 95 (73%) responded to the questions on screening in the first survey round and, of these, 81 (85%) responded to the second round. Following two rounds there was consensus agreement on the need for targeted screening at birth (76%) and in childhood (84%). Participants did not reach consensus agreement on the need for universal screening at birth (55%) or in childhood (40%). Support for targeted screening was linked to perceived constraints on service provision and the need to examine the performance, costs and benefits of screening.For targeted screening of high risk groups, we found highest agreement for siblings of known cases of FASD (96%) and children of mothers attending alcohol treatment services (93%). Participants agreed that screening for FASD primarily requires assessment of prenatal alcohol exposure at birth (86%) and in childhood (88%), and that a checklist is needed to identify the components of screening and criteria for referral at birth (84%) and in childhood (90%). CONCLUSIONS: There is an agreed need for targeted but not universal screening for FASD in Australia, and sufficient consensus among health professionals to warrant development and evaluation of standardi

OBJECTIVE: To evaluate health professionals' agreement with components of published diagnostic criteria for fetal alcohol spectrum disorders (FASD) in order to guide the development of standard diagnostic guidelines for Australia. DESIGN: A modified Delphi process was used to assess agreement among health professionals with expertise or experience in FASD screening or diagnosis. An online survey, which included 36 Likert statements on diagnostic methods, was administered over two survey rounds. For fetal alcohol syndrome (FAS), health professionals were presented with concepts from the Institute of Medicine (IOM), University of Washington (UW), Centers for Disease Control (CDC), revised IOM and Canadian diagnostic criteria. For partial FAS (PFAS), alcohol-related neurodevelopmental disorder (ARND), and alcohol-related birth defects (ARBD), concepts based on the IOM and the Canadian diagnostic criteria were compared. SETTING/PARTICIPANTS: 130 Australian and 9 international health professionals. RESULTS: Of 139 health professionals invited to complete the survey, 103 (74.1%) responded, and 74 (53.2%) completed one or more questions on diagnostic criteria. We found consensus agreement among participants on the diagnostic criteria for FAS, with the UW criteria most commonly endorsed when compared with all other published criteria for FAS. When health professionals were presented with concepts based on the Canadian and IOM diagnostic criteria, we found consensus agreement but no clear preference for either the Canadian or IOM criteria for the diagnosis of PFAS, and no consensus agreement on diagnostic criteria for ARND. We also found no consensus on the IOM diagnostic criteria for ARBD. CONCLUSIONS: Participants indicated clear support for use of the UW diagnostic criteria for FAS in Australia. These findings should be used to develop guidelines to facilitate improved awareness of, and address identified gaps in the infrastructure for, FASD diagnosis in Australia.

BACKGROUND: Despite the availability of five guidelines for the diagnosis of fetal alcohol spectrum disorders (FASD), there is no national endorsement for their use in diagnosis in Australia. In this study we aimed to describe health professionals' perceptions about the adoption of existing guidelines for the diagnosis of FASD in Australia and identify implications for the development of national guidelines. METHODS: We surveyed 130 Australian and 9 international health professionals with expertise or involvement in the screening or diagnosis of FASD. An online questionnaire was used to evaluate participants' familiarity with and use of five existing diagnostic guidelines for FASD, and to assess their perceptions about the adoption of these guidelines in Australia. RESULTS: Of the 139 participants surveyed, 84 Australian and 8 international health professionals (66.2%) responded to the questions on existing diagnostic guidelines. Participants most frequently reported using the University of Washington 4-Digit Diagnostic Code (27.2%) and the Canadian guidelines (18.5%) for diagnosis. These two guidelines were also most frequently recommended for adoption in Australia: 32.5% of the 40 participants who were familiar with the University of Washington 4-Digit Diagnostic Code recommended adoption of this guideline in Australia, and 30.8% of the 26 participants who were familiar with the Canadian guidelines recommended adoption of this guideline in Australia. However, for the majority of guidelines examined, most participants were unsure whether they should be adopted in Australia. The adoption of existing guidelines in Australia was perceived to be limited by: their lack of evidence base, including the appropriateness of established reference standards for the Australian population; their complexity; the need for training and support to use the guidelines; and the lack of an interdisciplinary and interagency model to support service delivery in Australia. CONCLUSIONS: Par