Prenatal alcohol exposure is an important modifiable cause of adverse fetal outcomes during and following pregnancy. Midwives are key providers of antenatal care, and it is important to understand the factors which influence their ability to provide appropriate advice and support to women about alcohol use in pregnancy. The main aim of this study was to develop a psychometrically valid scale to evaluate midwives’ beliefs about assessing alcohol use during pregnancy.
A self-administered questionnaire was developed to evaluate midwives’ beliefs about assessing alcohol use during pregnancy, including beliefs about positive and negative consequences of asking about alcohol use, and beliefs about capacity to assess alcohol use. The questionnaire was sent to 245 midwives working for a state-wide country health service in Western Australia. Exploratory factor analysis was used to identify the latent constructs assessed by the 36 belief items and provide initial construct validation of the Asking About Alcohol (AAA) Scale.
Of the 166 (67.8 %) midwives who responded to the survey, 160 (96.4 %) completed one or more of the belief items and were included in this analysis. Factor analysis identified six subscales which assessed beliefs about discomfort, capacity, effectiveness, role, trust and knowledge. Midwives held the most positive beliefs about their capacity to ask and the effectiveness of asking about alcohol use, and the least positive beliefs about women’s knowledge about alcohol use and discomfort associated with asking about alcohol use in pregnancy. Midwives’ beliefs about their role and the effectiveness of asking were most strongly associated with the intention to ask all pregnant women about alcohol use during pregnancy (r = −0.59, p < 0.001 and r = −0.52, p < 0.001).
Our analysis has identified key constructs underlying midwives’ beliefs about the assessment of alcohol use during pregnancy. The AAA Scale provides a basis for improved clarity and consistency in the conceptualisation and measurement of midwives’ beliefs which can be used to enhance our understanding of factors influencing midwives’ ability to deliver interventions to prevent alcohol use during pregnancy. The constructs identified in this exploratory analysis require confirmatory analysis to support their validity and generalizability.
Electronic supplementary material
The online version of this article (doi:10.1186/s12884-015-0779-6) contains supplementary material, which is available to authorized users.
Midwives; Beliefs; Alcohol; Pregnancy; Prevention
The prevalence of esophageal atresia (EA) has been shown to vary across different geographical settings. Investigation of geographical differences may provide an insight into the underlying etiology of EA.
The study population comprised infants diagnosed with EA during 1998 to 2007 from 18 of the 46 birth defects surveillance programs, members of the International Clearinghouse for Birth Defects Surveillance and Research. Total prevalence per 10,000 births for EA was defined as the total number of cases in live births, stillbirths, and elective termination of pregnancy for fetal anomaly (ETOPFA) divided by the total number of all births in the population.
Among the participating programs, a total of 2943 cases of EA were diagnosed with an average prevalence of 2.44 (95% confidence interval [CI], 2.35–2.53) per 10,000 births, ranging between 1.77 and 3.68 per 10,000 births. Of all infants diagnosed with EA, 2761 (93.8%) were live births, 82 (2.8%) stillbirths, 89 (3.0%) ETOPFA, and 11 (0.4%) had unknown outcomes. The majority of cases (2020, 68.6%), had a reported EA with fistula, 749 (25.5%) were without fistula, and 174 (5.9%) were registered with an unspecified code.
On average, EA affected 1 in 4099 births (95% CI, 1 in 3954–4251 births) with prevalence varying across different geographical settings, but relatively consistent over time and comparable between surveillance programs. Findings suggest that differences in the prevalence observed among programs are likely to be attributable to variability in population ethnic compositions or issues in reporting or registration procedures of EA, rather than a real risk occurrence difference.
esophageal atresia; congenital anomalies; prevalence; epidemiology
Midwives are an influential profession and a key group in informing women about alcohol consumption in pregnancy and its consequences. There are no current quantitative Australian data on midwives’ knowledge, attitudes and practice in relation to alcohol consumption during pregnancy and Fetal Alcohol Spectrum Disorder. We aimed to reduce this knowledge gap by understanding midwives’ perceptions of their practice in addressing alcohol consumption during pregnancy.
This cross-sectional study was conducted at 19 maternity sites across the seven health regions of country Western Australia. A questionnaire was designed following review of the literature and other relevant surveys. Midwifery managers of the maternity sites distributed questionnaires to all midwives working in their line of management. A total of 334 midwives were invited to participate in the research and (n = 245, 73.4%) of these were eligible.
The response fraction was (n = 166, 67.8%). Nearly all (n = 151, 93.2%) midwives asked pregnant women about their alcohol consumption during pregnancy and (n = 164, 99.4%) offered advice about alcohol consumption in accordance with the Australian Alcohol Guideline, which states “For women who are pregnant or planning a pregnancy, not drinking is the safest option”. Nearly two thirds (n = 104, 64.2%) of the midwives informed pregnant women about the effects of alcohol consumption in pregnancy, they did not always use the recommended AUDIT screening tool (n = 66, 47.5%) to assess alcohol consumption during pregnancy, nor conduct brief intervention when indicated (n = 107, 70.4%). Most midwives endorsed professional development about screening tools (n = 145, 93.5%), brief intervention (n = 144, 92.9%), and alcohol consumption during pregnancy and FASD (n = 144, 92.9%).
Nearly all midwives in this study asked and advised about alcohol consumption in pregnancy and around two thirds provided information about the effects of alcohol in pregnancy. Our findings support the need for further professional development for midwives on screening and brief intervention. Policy should support midwives’ practice to screen for alcohol consumption in pregnancy and offer brief intervention when indicated.
Midwives; Knowledge; Attitude; Practice; Alcohol; Pregnancy; Fetal alcohol spectrum disorder
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.
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.
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.
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 criteria among health professionals and evaluate their feasibility, acceptability and capacity to improve the identification of FASD in Australia.
Fetal alcohol spectrum disorder; Referral; Consensus
We examined the association of occupational exposure to handling cytotoxic drugs at work with risk of birth defects among a cohort of female veterinarians. This study is a follow up survey of 321 female participants (633 pregnancies) who participated in the Health Risks of Australian Veterinarian project. Data on pregnancies and exposure during each pregnancy was obtained by self-administered mailed questionnaire. Female veterinarians handling cytotoxic drugs during their pregnancy had a two-fold increased risk of birth defects in their offspring (RR = 2.08, 95% CI (1.05–4.15)). Results were consistent in subgroup analysis of those who graduated during the period of 1961 to 1980 (RR = 5.04, 95% CI (1.81, 14.03) and in those working specifically in small and large animal practice. There was no increased risk in the subgroup that graduated after 1980. Women with unplanned pregnancies were more likely to handle cytotoxic drugs on a daily basis (RR = 1.86, 95% CI, 1.00–3.48) and had a higher increased risk of birth defects than those who planned their pregnancies in recent graduates and in those who worked specifically in small animal practice (RR = 2.53, 95% CI, 1.18–5.42). This study suggests that the adverse effects of handling cytotoxic drugs in pregnant women may include an increased risk of birth defects. Pregnancy intention status is an important health behavior and should be considered in prenatal programs.
cytotoxic drugs; birth defects; female veterinarians; unplanned pregnancy; cohort study; women health
Acute lower respiratory infections (ALRIs) are leading causes of hospitalisation in children. Birth defects occur in 5% of live births in Western Australia (WA). The association between birth defects and ALRI hospitalisation is unknown.
We conducted a retrospective cohort study of 245,249 singleton births in WA (1996-2005). Population-based hospitalisation data were linked to the WA Register of Developmental Anomalies to investigate ALRI hospitalisations in children with and without birth defects. We used negative binomial regression to estimate associations between birth defects and number of ALRI hospitalisations before age 2 years, adjusting for known risk factors.
Overall, 9% of non-Aboriginal children and 37% of Aboriginal children with birth defects had at least one ALRI admission before age 2 years. Aboriginal children (IRR 2.3, 95% CI: 1.9-2.8) and non-Aboriginal children (IRR 2.0, 95% CI: 1.8-2.2) with birth defects had higher rates of hospitalisation for an ALRI than children with no birth defects. Rates of ALRI hospitalisation varied by type of defect but were increased for all major birth defects categories, the highest rate being for children with Down syndrome (IRR 8.0, 95% CI: 5.6-11.5). The rate of ALRI hospitalisation was 3 times greater in children with multiple birth defects than in those with isolated defects.
Children with birth defects experience higher rates of hospitalisation for ALRIs before age 2 years than children with no birth defects. Optimal vaccination coverage and immunoprophylaxis for specific categories of birth defects would assist in reducing hospitalisation rates for ALRI.
Acute lower respiratory infections; Birth defects; Aboriginal Australian children; Linked population health data; Hospitalisations
Public awareness-raising campaigns targeting alcohol use during pregnancy are an important part of preventing prenatal alcohol exposure and Fetal Alcohol Spectrum Disorder. Despite this, there is little evidence on what specific elements contribute to campaign message effectiveness. This research evaluated three different advertising concepts addressing alcohol and pregnancy: a threat appeal, a positive appeal promoting a self-efficacy message, and a concept that combined the two appeals. The primary aim was to determine the effectiveness of these concepts in increasing women’s intentions to abstain from alcohol during pregnancy.
Women of childbearing age and pregnant women residing in Perth, Western Australia participated in a computer-based questionnaire where they viewed either a control or one of the three experimental concepts. Following exposure, participants’ intentions to abstain from and reduce alcohol intake during pregnancy were measured. Other measures assessed included perceived main message, message diagnostics, and potential to promote defensive responses or unintended consequences.
The concepts containing a threat appeal were significantly more effective at increasing women’s intentions to abstain from alcohol during pregnancy than the self-efficacy message and the control. The concept that combined threat and self-efficacy is recommended for development as part of a mass-media campaign as it has good persuasive potential, provides a balance of positive and negative emotional responses, and is unlikely to result in defensive or unintended consequences.
This study provides important insights into the components that enhance the persuasiveness and effectiveness of messages aimed at preventing prenatal alcohol exposure. The recommended concept has good potential for use in a future campaign aimed at promoting women’s intentions to abstain from alcohol during pregnancy.
Alcohol; Advertising; Pregnancy; Messages; Campaigns; Threat; Self-efficacy; Fear; FASD
Aims. Nausea and vomiting of pregnancy is the most common medical condition in pregnancy. There is an increasing trend to prescribe ondansetron although its safety for use in pregnancy has not been established. Methods. Exposed pregnancies were all births in Western Australia, 2002–2005, where the mother was dispensed ondansetron under the Australian Pharmaceutical Benefits Scheme, compared with all other births during the same period. Outcomes investigated include maternal and child characteristics, birth defects, pregnancy, and delivery characteristics. Results. There were 96,968 births from 2002 to 2005. Ondansetron was dispensed to 251 pregnant women during this period. The women dispensed ondansetron were more likely to be privately insured (OR: 5.8; 95% CI: 4.3–7.9), to be Caucasian (3.3; 1.9–5.7), not to smoke during their pregnancy (2.9; 1.8–4.7), to have a multiple birth (2.7; 1.5–5.0), and to have used fertility treatment (1.8; 1.0–3.4). There was a small but not significantly increased risk of a major birth defect with first trimester exposure (1.2; 0.6–2.2). Conclusions. Our study did not detect any adverse outcomes from the use of ondansetron in pregnancy but could not conclude that ondansetron is safe to use in pregnancy.
To assess the direct annual health care costs for children and adolescents with Down syndrome in Western Australia and to explore the variation in health care utilisation including respite, according to age and disease profile.
Population-based data were derived from a cross sectional questionnaire which was distributed to all families who had a child with Down Syndrome up to 25 years of age in Western Australia.
Seventy-three percent of families (363/500) responded to the survey. Mean annual cost was $4,209 AUD ($4,287 USD) for direct health care including hospital, medical, pharmaceutical, respite and therapy with a median cost of $1,701. Overall, costs decreased with age. The decline in costs was a result of decreasing utilisation of hospital, medical and therapy costs with age. Conversely, respite increased with age and also with dependency. Health care costs were greater in all age groups with increasing dependency and for a previous or current diagnosis of congenital heart disease. Annual health care costs did not vary by parental income, including cost of respite.
Direct health care costs for children with Down syndrome decrease with age to approximate population costs, although costs of respite show an increasing trend.
Down syndrome; direct health care costs; health care utilisation
To examine the incidence of childhood type 1 diabetes in Western Australia from 1985–2010.
RESEARCH DESIGN AND METHODS
Incidence rates were calculated for children aged 0–14 years and were analyzed by calendar year, sex, and age at diagnosis.
There were 1,873 cases, and the mean incidence was 18.1/100,000 person-years (95% CI: 17.5–19.2). The incidence increased by 2.3% a year (1.6–2.9%) with a sinusoidal 5-year cyclical variation of 14% (7–22%). The lowest rate of increase in incidence was observed in 0–4-year-olds.
The cyclical pattern in incidence observed supports the role of environmental factors in childhood type 1 diabetes.
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.
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.
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.
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.
Fetal alcohol spectrum disorder; Diagnosis; Consensus
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.
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.
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.
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.
Consumer participation; Fetal alcohol spectrum disorder; Research
Although record linkage of routinely collected health datasets is a valuable research resource, most datasets are established for administrative purposes and not for health outcomes research. In order for meaningful results to be extrapolated to specific populations, the limitations of the data and linkage methodology need to be investigated and clarified. It is the objective of this study to investigate the differences in ascertainment which may arise between a hospital admission dataset and a dispensing claims dataset, using major depression in pregnancy as an example. The safe use of antidepressants in pregnancy is an ongoing issue for clinicians with around 10% of pregnant women suffer from depression. As the birth admission will be the first admission to hospital during their pregnancy for most women, their use of antidepressants, or their depressive condition, may not be revealed to the attending hospital clinicians. This may result in adverse outcomes for the mother and infant.
Population-based de-identified data were provided from the Western Australian Data Linkage System linking the administrative health records of women with a delivery to related records from the Midwives’ Notification System, the Hospital Morbidity Data System and the national Pharmaceutical Benefits Scheme dataset. The women with depression during their pregnancy were ascertained in two ways: women with dispensing records relating to dispensed antidepressant medicines with an WHO ATC code to the 3rd level, pharmacological subgroup, ‘N06A Antidepressants’; and, women with any hospital admission during pregnancy, including the birth admission, if a comorbidity was recorded relating to depression.
From 2002 to 2005, there were 96698 births in WA. At least one antidepressant was dispensed to 4485 (4.6%) pregnant women. There were 3010 (3.1%) women with a comorbidity related to depression recorded on their delivery admission, or other admission to hospital during pregnancy. There were a total of 7495 pregnancies identified by either set of records. Using data linkage, we determined that these records represented 6596 individual pregnancies. Only 899 pregnancies were found in both groups (13.6% of all cases). 80% of women dispensed an antidepressant did not have depression recorded as a comorbidity on their hospital records. A simple capture-recapture calculation suggests the prevalence of depression in this population of pregnant women to be around 16%.
No single data source is likely to provide a complete health profile for an individual. For women with depression in pregnancy and dispensed antidepressants, the hospital admission data do not adequately capture all cases.
Population-based; Data linkage; Pharmacovigilance; Case ascertainment; Depression; Pregnancy; Antidepressant
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.
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.
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%).
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 standardised methods for targeted screening and referral in the Australian context. Participants emphasised the need for locally-appropriate, evidence-based approaches to facilitate case detection, and the importance of ensuring that screening and referral programs are supported by adequate diagnostic and management capacity.
The early years of life have a profound effect on a child’s developmental pathway. The children born to mothers suffering from depression may be at risk of increased morbidity and mortality in the first years of life.
The objective of this study was to investigate the hospital admissions and mortality of children whose mothers were dispensed a selective serotonin reuptake inhibitor (SSRI) during their pregnancy.
This was a population-based study of all pregnancy events in Western Australia (WA) from 2002 to 2005. The study used linkable state health administrative data from the WA Data Linkage System (WADLS) and the national Pharmaceutical Benefits Scheme (PBS), enabling birth outcomes, hospital admissions and deaths to be ascertained for the children of women dispensed an SSRI during their pregnancy.
There were 3764 children born to 3703 women who had been dispensed an SSRI during their pregnancy (3.8% of all pregnancies in WA, 2002–5), and 94 561 children born to 92 995 women who had not been dispensed an SSRI. Mean birth weight, length and APGAR score at 5 minutes were significantly lower in children of women dispensed an SSRI, regardless of whether the SSRI was dispensed in trimester 1, or, trimester 2 or 3 only. 0.9% of the live born children in the SSRI group had died before the age of 1 year compared with 0.5% of the non-SSRI group (odds ratio [OR] 1.8; 95% CI 1.3, 2.6). Before the age of 2 years, 42.9% of the children in the SSRI group had been admitted to hospital after their birth admission, compared with 34.1% of the non-SSRI group (OR 1.4; 95% CI 1.3, 1.6). The most common reason for admission to hospital was acute bronchiolitis (OR 1.6; 95% CI 1.3, 1.8), with an increased risk seen in children of mothers who did not smoke during their pregnancy (OR 1.7; 95% CI 1.4, 2.0).
The children in the SSRI group were more likely to be admitted to hospital in the first years of life, and this may reflect their prenatal exposure to SSRIs, be related to maternal depression, or SSRI use may be a proxy for an environmental exposure such as smoking, or a combination of these factors. Although the numbers of deaths in the first year of life were small, the increased risk of death in the first year of life in the SSRI group (OR 1.8; 95% CI 1.3, 2.6) is a new finding and should be investigated further.
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.
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.
130 Australian and 9 international health professionals.
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.
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.
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.
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.
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.
Participants indicated some support for the adoption of the University of Washington or Canadian guidelines for FASD diagnosis; however, concerns were raised about the adoption of these diagnostic guidelines in their current form. Australian diagnostic guidelines will require evaluation to establish their validity in the Australian context, and a comprehensive implementation model is needed to facilitate improved diagnostic capacity in Australia.
This study aimed to investigate the trajectories over time of health status and health service use in Rett syndrome by mutation type. Data were obtained from questionnaires administered over six years to 256 participants from the Australian Rett Syndrome Database. Health status (episodes of illness and medication load) and health service use (general practitioner and specialist visits and hospital stays) were summarized into composite scores with Principal Component Analysis. Linear and mixed regression models examined effects of mutation type and other variables on these scores over time. For some mutations (such as p.R255X, p.R168X) health status was poorer at a younger age and improved over time, while for p.R133C it was better at a younger age and deteriorated with time. For those with p.R133C health service use was lowest at a younger age and highest at 25 years. With other mutations, such as p.R255X, p.R270X, p.R294X, C terminal and p.R306C, health service use was higher at a younger age, but dropped off considerably by 25 years of age. Health service use generally declined in parallel with deterioration in health status, although this pattern differed by mutation type, demonstrating important variability in the course of Rett syndrome.
To explore women's alcohol consumption in pregnancy, and potential predictors of alcohol consumption in pregnancy including: demographic characteristics; and women's knowledge and attitudes regarding alcohol consumption in pregnancy and its effects on the fetus.
We conducted a national cross-sectional survey via computer assisted telephone interview of 1103 Australian women aged 18 to 45 years. Participants were randomly selected from the Electronic White Pages. Pregnant women were not eligible to participate. Quotas were set for age groups and a minimum of 100 participants per state to ensure a national sample reflecting the population. The questionnaire was based on a Health Canada survey with additional questions constructed by the investigators. Descriptive statistics were calculated and logistic regression analyses were used to assess associations of alcohol consumption in pregnancy with participants' characteristics, knowledge and attitudes.
The majority of women (89.4%) had consumed alcohol in the last 12 months. During their last pregnancy (n = 700), 34.1% drank alcohol. When asked what they would do if planning a pregnancy (n = 1103), 31.6% said they would consume alcohol and 4.8% would smoke. Intention to consume alcohol in a future pregnancy was associated with: alcohol use in the last pregnancy (adjusted OR (aOR) 43.9; 95% Confidence Interval (CI) 27.0 to 71.4); neutral or positive attitudes towards alcohol use in pregnancy (aOR 5.1; 95% CI 3.6 to 7.1); intention to smoke in a future pregnancy (aOR 4.7; 95% CI 2.5 to 9.0); and more frequent and higher current alcohol consumption.
Women's past pregnancy and current drinking behaviour, and attitudes to alcohol use in pregnancy were the strongest predictors of alcohol consumption in pregnancy. Targeted interventions for women at higher risk of alcohol consumption in pregnancy are needed to change women's risk perception and behaviour.
Project management is widely used to deliver projects on time, within budget and of defined quality. However, there is little published information describing its use in managing health and medical research projects. We used project management in the Alcohol and Pregnancy Project (2006-2008) http://www.ichr.uwa.edu.au/alcoholandpregnancy and in this paper report researchers' opinions on project management and whether it made a difference to the project.
A national interdisciplinary group of 20 researchers, one of whom was the project manager, formed the Steering Committee for the project. We used project management to ensure project outputs and outcomes were achieved and all aspects of the project were planned, implemented, monitored and controlled. Sixteen of the researchers were asked to complete a self administered questionnaire for a post-project review.
The project was delivered according to the project protocol within the allocated budget and time frame. Fifteen researchers (93.8%) completed a questionnaire. They reported that project management increased the effectiveness of the project, communication, teamwork, and application of the interdisciplinary group of researchers' expertise. They would recommend this type of project management for future projects.
Our post-project review showed that researchers comprehensively endorsed project management in the Alcohol and Pregnancy Project and agreed that project management had contributed substantially to the research. In future, we will project manage new projects and conduct post-project reviews. The results will be used to encourage continuous learning and continuous improvement of project management, and provide greater transparency and accountability of health and medical research. The use of project management can benefit both management and scientific outcomes of health and medical research projects.
To collaborate with consumer and community representatives in the Alcohol and Pregnancy Project from 2006-2008 http://www.ichr.uwa.edu.au/alcoholandpregnancy and evaluate researchers' and consumer and community representatives' perceptions of the process, context and impact of consumer and community participation in the project.
We formed two reference groups and sought consumer and community representatives' perspectives on all aspects of the project over a three year period. We developed an evaluation framework and asked consumer and community representatives and researchers to complete a self-administered questionnaire at the end of the project.
Fifteen researchers (93.8%) and seven (53.8%) consumer and community representatives completed a questionnaire. Most consumer and community representatives agreed that the process and context measures of their participation had been achieved. Both researchers and consumer and community representatives identified areas for improvement and offered suggestions how these could be improved for future research. Researchers thought consumer and community participation contributed to project outputs and outcomes by enhancing scientific and ethical standards, providing legitimacy and authority, and increasing the project's credibility and participation. They saw it was fundamental to the research process and acknowledged consumer and community representatives for their excellent contribution. Consumer and community representatives were able to directly influence decisions about the research. They thought that consumer and community participation had significant influence on the success of project outputs and outcomes.
Consumer and community participation is an essential component of good research practice and contributed to the Alcohol and Pregnancy Project by enhancing research processes, outputs and outcomes, and this participation was valued by community and consumer representatives and researchers. The National Health and Medical Research Council in Australia expects researchers to work in partnership and involve consumer and community representatives in health and medical research, and to evaluate community and consumer participation. It is important to demonstrate whether consumer and community participation makes a difference to health and medical research.
Consumer and community participation; health and medical research; evaluation; Fetal Alcohol Spectrum Disorder; alcohol; impact
Research findings investigating the sociodemographics of autism spectrum disorder (ASD) have been inconsistent and rarely considered the presence of intellectual disability (ID).
We used population data on Western Australian singletons born from 1984 to 1999 (n = 398,353) to examine the sociodemographic characteristics of children diagnosed with ASD with or without ID, or ID without ASD compared with non-affected children.
The profiles for the four categories examined, mild-moderate ID, severe ID, ASD without ID and ASD with ID varied considerably and we often identified a gradient effect where the risk factors for mild-moderate ID and ASD without ID were at opposite extremes while those for ASD with ID were intermediary. This was demonstrated clearly with increased odds of ASD without ID amongst older mothers aged 35 years and over (odds ratio (OR) = 1.69 [CI: 1.18, 2.43]), first born infants (OR = 2.78; [CI: 1.67, 4.54]), male infants (OR = 6.57 [CI: 4.87, 8.87]) and increasing socioeconomic advantage. In contrast, mild-moderate ID was associated with younger mothers aged less than 20 years (OR = 1.88 [CI: 1.57, 2.25]), paternal age greater than 40 years (OR = 1.59 [CI: 1.36, 1.86]), Australian-born and Aboriginal mothers (OR = 1.60 [CI: 1.41, 1.82]), increasing birth order and increasing social disadvantage (OR = 2.56 [CI: 2.27, 2.97]). Mothers of infants residing in regional or remote areas had consistently lower risk of ASD or ID and may be linked to reduced access to services or under-ascertainment rather than a protective effect of location.
The different risk profiles observed between groups may be related to aetiological differences or ascertainment factors or both. Untangling these pathways is challenging but an urgent public health priority in view of the supposed autism epidemic.
Alcohol exposure in pregnancy is a common and modifiable risk factor for poor pregnancy and child outcomes. Alcohol exposure in pregnancy can cause a range of physical and neurodevelopmental problems in the child including the Fetal Alcohol Spectrum Disorders (FASD). In order to improve prevention strategies, we sought to describe the knowledge and attitudes of women of childbearing age regarding alcohol consumption during pregnancy and its effects on the fetus.
We conducted a national cross-sectional survey via computer assisted telephone interview of 1103 Australian women aged 18 to 45 years. Participants were randomly selected from the Electronic White Pages. Pregnant women were not eligible to participate. Quotas were set for age groups and a minimum of 100 participants per state to ensure a national sample reflecting the population. The questionnaire was based on a Health Canada survey with additional questions constructed by the investigators. Descriptive statistics were calculated and logistic regression analyses were used to assess associations with participants' knowledge and attitudes.
Of women surveyed, 61.5% had heard about effects of alcohol on the fetus and 55.3% had heard of Fetal Alcohol Syndrome. Although 92.7% agreed alcohol can affect the unborn child, 16.2% did not agree that the disabilities could be lifelong. Most women agreed that pregnant women should not drink alcohol (80.2%) and 79.2% reported having negative feelings towards pregnant women drinking alcohol. Women with higher education levels were more likely to know the effects of alcohol consumption in pregnancy (adjusted OR 5.62; 95% CI 3.20 to 9.87) but education level and knowledge were not associated with attitude.
There was a disjunction between knowledge and attitudes towards alcohol consumption in pregnancy. These findings will assist in developing effective health promotion campaigns to reduce fetal alcohol exposure and subsequent fetal damage.