PMCC PMCC

Search tips
Search criteria

Advanced
Results 1-25 (28)
 

Clipboard (0)
None

Select a Filter Below

Journals
more »
Year of Publication
1.  Midwives’ knowledge, attitudes and practice about alcohol exposure and the risk of fetal alcohol spectrum disorder 
Background
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.
Methods
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.
Results
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%).
Conclusion
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.
doi:10.1186/s12884-014-0377-z
PMCID: PMC4228156  PMID: 25366388
Midwives; Knowledge; Attitude; Practice; Alcohol; Pregnancy; Fetal alcohol spectrum disorder
2.  Fetal alcohol spectrum disorder: development of consensus referral criteria for specialist diagnostic assessment in Australia 
BMC Pediatrics  2014;14:178.
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 criteria among health professionals and evaluate their feasibility, acceptability and capacity to improve the identification of FASD in Australia.
doi:10.1186/1471-2431-14-178
PMCID: PMC4123492  PMID: 25005425
Fetal alcohol spectrum disorder; Referral; Consensus
3.  A Study of Handling Cytotoxic Drugs and Risk of Birth Defects in Offspring of Female Veterinarians 
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.
doi:10.3390/ijerph110606216
PMCID: PMC4078575  PMID: 24927037
cytotoxic drugs; birth defects; female veterinarians; unplanned pregnancy; cohort study; women health
4.  Morbidity due to acute lower respiratory infection in children with birth defects: a total population-based linked data study 
BMC Pediatrics  2014;14:80.
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1471-2431-14-80
PMCID: PMC3987821  PMID: 24661413
Acute lower respiratory infections; Birth defects; Aboriginal Australian children; Linked population health data; Hospitalisations
5.  Messages that increase women’s intentions to abstain from alcohol during pregnancy: results from quantitative testing of advertising concepts 
BMC Public Health  2014;14:30.
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1471-2458-14-30
PMCID: PMC3903031  PMID: 24410764
Alcohol; Advertising; Pregnancy; Messages; Campaigns; Threat; Self-efficacy; Fear; FASD
6.  Off-Label Use of Ondansetron in Pregnancy in Western Australia 
BioMed Research International  2013;2013:909860.
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.
doi:10.1155/2013/909860
PMCID: PMC3874333  PMID: 24396830
7.  Direct health care costs of children and adolescents with Down syndrome 
The Journal of pediatrics  2011;159(4):10.1016/j.jpeds.2011.06.007.
Objective
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.
Study design
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.
Results
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.
Conclusions
Direct health care costs for children with Down syndrome decrease with age to approximate population costs, although costs of respite show an increasing trend.
doi:10.1016/j.jpeds.2011.06.007
PMCID: PMC3858577  PMID: 21784457
Down syndrome; direct health care costs; health care utilisation
8.  Cyclical Variation in the Incidence of Childhood Type 1 Diabetes in Western Australia (1985–2010) 
Diabetes Care  2012;35(11):2300-2302.
OBJECTIVE
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.
RESULTS
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.
CONCLUSIONS
The cyclical pattern in incidence observed supports the role of environmental factors in childhood type 1 diabetes.
doi:10.2337/dc12-0205
PMCID: PMC3476891  PMID: 22837374
9.  Recommendations from a consensus development workshop on the diagnosis of fetal alcohol spectrum disorders in Australia 
BMC Pediatrics  2013;13:156.
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.
doi:10.1186/1471-2431-13-156
PMCID: PMC3849849  PMID: 24083778
Fetal alcohol spectrum disorder; Diagnosis; Consensus
10.  Involving consumers and the community in the development of a diagnostic instrument for fetal alcohol spectrum disorders in Australia 
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.
doi:10.1186/1478-4505-11-26
PMCID: PMC3733745  PMID: 23898969
Consumer participation; Fetal alcohol spectrum disorder; Research
11.  Are women with major depression in pregnancy identifiable in population health data? 
Background
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.
Methods
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.
Results
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%.
Conclusion
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.
doi:10.1186/1471-2393-13-63
PMCID: PMC3602106  PMID: 23497210
Population-based; Data linkage; Pharmacovigilance; Case ascertainment; Depression; Pregnancy; Antidepressant
12.  A modified Delphi study of screening for fetal alcohol spectrum disorders in Australia 
BMC Pediatrics  2013;13:13.
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 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.
doi:10.1186/1471-2431-13-13
PMCID: PMC3583688  PMID: 23347677
13.  Early Morbidity and Mortality Following In Utero Exposure to Selective Serotonin Reuptake Inhibitors 
CNS Drugs  2012;26(7):e1-e14.
Background
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.
Objective
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.
Methods
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.
Results
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).
Conclusions
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.
doi:10.2165/11634190-000000000-00000
PMCID: PMC3585696  PMID: 22712699
15.  Consensus diagnostic criteria for fetal alcohol spectrum disorders in Australia: a modified Delphi study 
BMJ Open  2012;2(5):e001918.
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.
doi:10.1136/bmjopen-2012-001918
PMCID: PMC3488737  PMID: 23100447
16.  Health professionals’ perceptions about the adoption of existing guidelines for the diagnosis of fetal alcohol spectrum disorders in Australia 
BMC Pediatrics  2012;12:69.
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
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.
doi:10.1186/1471-2431-12-69
PMCID: PMC3416706  PMID: 22697051
17.  The relationship between MECP2 mutation type and health status and service use trajectories over time in a Rett syndrome population 
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.
doi:10.1016/j.rasd.2010.06.007
PMCID: PMC2968739  PMID: 21057653
18.  Attitudes and behaviour predict women's intention to drink alcohol during pregnancy: the challenge for health professionals 
BMC Public Health  2011;11:584.
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1471-2458-11-584
PMCID: PMC3155919  PMID: 21781309
19.  Researchers' experience with project management in health and medical research: Results from a post-project review 
BMC Public Health  2011;11:424.
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1471-2458-11-424
PMCID: PMC3135535  PMID: 21635721
20.  Collaborating with consumer and community representatives in health and medical research in Australia: results from an evaluation 
Objective
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1478-4505-9-18
PMCID: PMC3118959  PMID: 21569591
Consumer and community participation; health and medical research; evaluation; Fetal Alcohol Spectrum Disorder; alcohol; impact
21.  Autism and Intellectual Disability Are Differentially Related to Sociodemographic Background at Birth 
PLoS ONE  2011;6(3):e17875.
Background
Research findings investigating the sociodemographics of autism spectrum disorder (ASD) have been inconsistent and rarely considered the presence of intellectual disability (ID).
Methods
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.
Results
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.
Conclusions
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.
doi:10.1371/journal.pone.0017875
PMCID: PMC3068153  PMID: 21479223
22.  Women's knowledge and attitudes regarding alcohol consumption in pregnancy: a national survey 
BMC Public Health  2010;10:510.
Background
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.
Methods
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.
Results
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.
Conclusions
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.
doi:10.1186/1471-2458-10-510
PMCID: PMC2936428  PMID: 20727217
23.  Increasing prevalence of hypospadias in Western Australia, 1980–2000 
Archives of Disease in Childhood  2007;92(7):580-584.
Objectives
Hypospadias, a common birth defect, has shown widespread variation in reported rates and temporal trends across countries over the last 30 years. The aim of this study was to determine the prevalence and trends of hypospadias in an Australian population.
Design
Population‐based study of all male infants born in Western Australia (WA) between 1980 and 2000 diagnosed with hypospadias and notified to the WA Birth Defects Registry.
Main outcome measures
Prevalence of hypospadias, birth outcome and association with other congenital anomalies, stratified by degree‐of‐severity.
Results
1788 cases of hypospadias were registered in WA in 1980–2000 with an overall prevalence of 34.8 (95% confidence interval (CI): 33.2 to 36.4) cases per 10 000 births. The prevalence increased by 2.0% per annum (95% CI: 1.2% to 2.8%) from 27.9 in 1980 to 43.2 per 10 000 births in 2000 (p<0.001). Hypospadias was mild in 84% of cases, moderate‐severe in 11% and unspecified in 5%, with the number of moderate‐severe hypospadias almost doubling over time (p<0.01). There were 1465 (82%) cases of isolated hypospadias and 323 (18%) had co‐existing anomalies. Infants with co‐existing genital (relative risk (RR) 4.5; 95% CI: 3.3 to 6.1) or non‐genital (RR 1.5; 95% CI: 1.0 to 2.2) anomalies were more likely to have moderate‐severe hypospadias compared with isolated cases.
Conclusion
Hypospadias affects one in 231 births and has been reported to have increased significantly over the last 20 years. Future investigation of the aetiology of hypospadias is important to identify potentially modifiable risk factors and ensure optimal male reproductive health in the future.
doi:10.1136/adc.2006.112862
PMCID: PMC2083775  PMID: 17405856
hypospadias; prevalence; infant; congenital abnormality; Australia
24.  Maternal physical and mental health in children with Down syndrome 
The Journal of pediatrics  2008;153(3):320-326.
Objective
To identify the relationship between characteristics of the child with Down syndrome and the health of their mother.
Study design
Families with a child/young adult with Down syndrome (<25 years) provided information related to the health of the child, functioning and behaviour and the health and wellbeing of the mother (n=250).
Results
The mean physical health score of mothers was 50.2 (SD= 9.6). Factors associated with lower mean physical health scores were: child having a current heart problem (p=0.036), a higher BMI (p=0.006) and higher (poorer) scores on the Developmental Behaviour Checklist (DBC). Better physical health scores were seen in mothers whose children required no help/supervision in learning new skills (p=0.008) and domestic tasks (p=0.014). The mean mental health score of mothers was 45.2 (SD= 10.6), significantly lower than the norm of 50 (p<0.0001). Associated child factors included current ear problems (p=0.079), muscle/bone problems (p=0.004), >4 episodes of illness in past year (p=0.016), and higher scores on the DBC (p<0.0001).
Conclusions
The most important predictors of maternal health were children’s behavioural difficulties, everyday functioning and current health status. Mothers of children with Down syndrome appear to experience poorer mental health and may require greater support and services to improve behaviour management skills for their child and their own psychological well-being.
doi:10.1016/j.jpeds.2008.02.047
PMCID: PMC2586647  PMID: 18534233
25.  Systematic review of interventions for children with Fetal Alcohol Spectrum Disorders 
BMC Pediatrics  2009;9:35.
Background
Children with Fetal Alcohol Spectrum Disorders (FASD) may have significant neurobehavioural problems persisting into adulthood. Early diagnosis may decrease the risk of adverse life outcomes. However, little is known about effective interventions for children with FASD. Our aim is to conduct a systematic review of the literature to identify and evaluate the evidence for pharmacological and non-pharmacological interventions for children with FASD.
Methods
We did an electronic search of the Cochrane Library, MEDLINE, EMBASE, PsychINFO, CINAHL and ERIC for clinical studies (Randomized controlled trials (RCT), quasi RCT, controlled trials and pre- and post-intervention studies) which evaluated pharmacological, behavioural, speech therapy, occupational therapy, physiotherapy, psychosocial and educational interventions and early intervention programs. Participants were aged under 18 years with a diagnosis of a FASD. Selection of studies for inclusion and assessment of study quality was undertaken independently by two reviewers. Meta-analysis was not possible due to diversity in the interventions and outcome measures.
Results
Twelve studies met the inclusion criteria. Methodological weaknesses were common, including small sample sizes; inadequate study design and short term follow up. Pharmacological interventions, evaluated in two studies (both RCT) showed some benefit from stimulant medications. Educational and learning strategies (three RCT) were evaluated in seven studies. There was some evidence to suggest that virtual reality training, cognitive control therapy, language and literacy therapy, mathematics intervention and rehearsal training for memory may be beneficial strategies. Three studies evaluating social communication and behavioural strategies (two RCT) suggested that social skills training may improve social skills and behaviour at home and Attention Process Training may improve attention.
Conclusion
There is limited good quality evidence for specific interventions for managing FASD, however seven randomized controlled trials that address specific functional deficits of children with FASD are underway or recently completed.
doi:10.1186/1471-2431-9-35
PMCID: PMC2698825  PMID: 19463198

Results 1-25 (28)