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1.  Risk indicators for severe impaired oral health among indigenous Australian young adults 
BMC Oral Health  2010;10:1.
Background
Oral health impairment comprises three conceptual domains; pain, appearance and function. This study sought to: (1) estimate the prevalence of severe oral health impairment as assessed by a summary oral health impairment measure, including aspects of dental pain, dissatisfaction with dental appearance and difficulty eating, among a birth cohort of Indigenous Australian young adults (n = 442, age range 16-20 years); (2) compare prevalence according to demographic, socio-economic, behavioural, dental service utilisation and oral health outcome risk indicators; and (3) ascertain the independent contribution of those risk indicators to severe oral health impairment in this population.
Methods
Data were from the Aboriginal Birth Cohort (ABC) study, a prospective longitudinal investigation of Aboriginal individuals born 1987-1990 at an Australian regional hospital. Data for this analysis pertained to Wave-3 of the study only. Severe oral health impairment was defined as reported experience of toothache, poor dental appearance and food avoidance in the last 12 months. Logistic regression models were used to evaluate effects of demographic, socio-economic, behavioural, dental service utilisation and clinical oral disease indicators on severe oral health impairment. Effects were quantified as odds ratios (OR).
Results
The percent of participants with severe oral health impairment was 16.3 (95% CI 12.9-19.7). In the multivariate model, severe oral health impairment was associated with untreated dental decay (OR 4.0, 95% CI 1.6-9.6). In addition to that clinical indicator, greater odds of severe oral health impairment were associated with being female (OR 2.0, 95% CI 1.2-3.6), being aged 19-20 years (OR 2.1, 95% CI 1.2-3.6), soft drink consumption every day or a few days a week (OR 2.6, 95% 1.2-5.6) and non-ownership of a toothbrush (OR 1.9, 95% CI 1.1-3.4).
Conclusions
Severe oral health impairment was prevalent among this population. The findings suggest that public health strategies that address prevention and treatment of dental disease, self-regulation of soft drink consumption and ownership of oral self-care devices are needed if severe oral health impairment among Indigenous Australian young adults is to be reduced.
doi:10.1186/1472-6831-10-1
PMCID: PMC2827466  PMID: 20102640
2.  Oral health and social and emotional well-being in a birth cohort of Aboriginal Australian young adults 
BMC Public Health  2011;11:656.
Background
Social and emotional well-being is an important component of overall health. In the Indigenous Australian context, risk indicators of poor social and emotional well-being include social determinants such as poor education, employment, income and housing as well as substance use, racial discrimination and cultural knowledge. This study sought to investigate associations between oral health-related factors and social and emotional well-being in a birth cohort of young Aboriginal adults residing in the northern region of Australia's Northern Territory.
Methods
Data were collected on five validated domains of social and emotional well-being: anxiety, resilience, depression, suicide and overall mental health. Independent variables included socio-demographics, dental health behaviour, dental disease experience, oral health-related quality of life, substance use, racial discrimination and cultural knowledge.
Results
After adjusting for other covariates, poor oral health-related items were associated with each of the social and emotional well-being domains. Specifically, anxiety was associated with being female, having one or more decayed teeth and racial discrimination. Resilience was associated with being male, having a job, owning a toothbrush, having one or more filled teeth and knowing a lot about Indigenous culture; while being female, having experienced dental pain in the past year, use of alcohol, use of marijuana and racial discrimination were associated with depression. Suicide was associated with being female, having experience of untreated dental decay and racial discrimination; while being female, having experience of dental disease in one or more teeth, being dissatisfied about dental appearance and racial discrimination were associated with poor mental health.
Conclusion
The results suggest there may be value in including oral health-related initiatives when exploring the role of physical conditions on Indigenous social and emotional well-being.
doi:10.1186/1471-2458-11-656
PMCID: PMC3176220  PMID: 21851641
3.  Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort 
Background
Longitudinal prospective birth cohort studies are pivotal to identifying fundamental causes and determinants of disease and health over the life course. There is limited information about the challenges, retention, and collection strategies in the study of Indigenous populations. The aim is to describe the follow-up rates of an Australian Aboriginal Birth Cohort study and how they were achieved.
Methods
Participants were 686 babies enrolled between January 1987 and March 1990, born to a mother recorded in the Delivery Suite Register of the Royal Darwin Hospital (RDH) as a self-identified Aboriginal. The majority of the participants (70%) resided in Northern Territory within rural, remote and very remote Aboriginal communities that maintain traditional connections to their land and culture. The Aboriginal communities are within a sparsely populated (0.2 people/ km2) area of approximately 900,000 km2 (347sq miles), with poor communication and transport infrastructures. Follow-ups collecting biomedical and lifestyle data directly from participants in over 40 locations were conducted at 11.4 years (Wave-2) and 18.2 years (Wave-3), with Wave-4 follow-up currently underway.
Results
Follow-ups at 11 and 18 years of age successfully examined 86% and 72% of living participants respectively. Strategies addressing logistic, cultural and ethical challenges are documented.
Conclusions
Satisfactory follow-up rates of a prospective longitudinal Indigenous birth cohort with traditional characteristics are possible while maintaining scientific rigor in a challenging setting. Approaches included flexibility, respect, and transparent communication along with the adoption of culturally sensitive behaviours. This work should inform and assist researchers undertaking or planning similar studies in Indigenous and developing populations.
doi:10.1186/1471-2288-14-31
PMCID: PMC3942517  PMID: 24568142
Epidemiological method; Prospective longitudinal cohort; Ethnic minority; Health determinants; Australian; Aboriginal
4.  Use of health services by remote dwelling Aboriginal infants in tropical northern Australia: a retrospective cohort study 
BMC Pediatrics  2012;12:19.
Background
Australia is a wealthy developed country. However, there are significant disparities in health outcomes for Aboriginal infants compared with other Australian infants. Health outcomes tend to be worse for those living in remote areas. Little is known about the health service utilisation patterns of remote dwelling Aboriginal infants. This study describes health service utilisation patterns at the primary and referral level by remote dwelling Aboriginal infants from northern Australia.
Results
Data on 413 infants were analysed. Following birth, one third of infants were admitted to the regional hospital neonatal nursery, primarily for preterm birth. Once home, most (98%) health service utilisation occurred at the remote primary health centre, infants presented to the centre about once a fortnight (mean 28 presentations per year, 95%CI 26.4-30.0). Half of the presentations were for new problems, most commonly for respiratory, skin and gastrointestinal symptoms. Remaining presentations were for reviews or routine health service provision. By one year of age 59% of infants were admitted to hospital at least once, the rate of hospitalisation per infant year was 1.1 (95%CI 0.9-1.2).
Conclusions
The hospitalisation rate is high and admissions commence early in life, visits to the remote primary health centre are frequent. Half of all presentations are for new problems. These findings have important implications for health service planning and delivery to remote dwelling Aboriginal families.
doi:10.1186/1471-2431-12-19
PMCID: PMC3384247  PMID: 22373262
5.  A phase II clinical trial of a dental health education program delivered by aboriginal health workers to prevent early childhood caries 
BMC Public Health  2012;12:681.
Background
Early Childhood Caries (ECC) is a widespread problem in Australian Aboriginal communities causing severe pain and sepsis. In addition dental services are difficult to access for many Aboriginal children and trying to obtain care can be stressful for the parents. The control of dental caries has been identified as a key indictor in the reduction of Indigenous disadvantage. Thus, there is a need for new approaches to prevent ECC, which reflect the cultural norms of Aboriginal communities.
Methods/Design
This is a Phase II single arm trial designed to gather information on the effectiveness of a dental health education program for Aboriginal children aged 6 months, followed over 2 years. The program will deliver advice from Aboriginal Health Workers on tooth brushing, diet and the use of fluoride toothpaste to Aboriginal families. Six waves of data collection will be conducted to enable estimates of change in parental knowledge and their views on the acceptability of the program. The Aboriginal Health Workers will also be interviewed to record their views on the acceptability and program feasibility. Clinical data on the child participants will be recorded when they are 30 months old and compared with a reference population of similar children when the study began. Latent variable modeling will be used to interpret the intervention effects on disease outcome.
Discussion
The research project will identify barriers to the implementation of a family centered Aboriginal oral health strategy, as well as the development of evidence to assist in the planning of a Phase III cluster randomized study.
Trial registration
ACTRN12612000712808
doi:10.1186/1471-2458-12-681
PMCID: PMC3520707  PMID: 22909327
Oral health; Aboriginal families; Health promotion
6.  Inequalities in ventilation tube insertion procedures between Aboriginal and non-Aboriginal children in New South Wales, Australia: a data linkage study 
BMJ Open  2013;3(11):e003807.
Objectives
Australian Aboriginal children experience earlier, more frequent and more severe otitis media, particularly in remote communities, than non-Aboriginal children. Insertion of ventilation tubes is the main surgical procedure for otitis media. Our aim was to quantify inequalities in ventilation tube insertion (VTI) procedures between Australian Aboriginal and non-Aboriginal children, and to explore the influence of birth characteristics, socioeconomic background and geographical remoteness on this inequality.
Design
Retrospective cohort study using linked hospital and mortality data from July 2000 to December 2008.
Setting and participants
A whole-of-population cohort of 653 550 children (16 831 Aboriginal and 636 719 non-Aboriginal) born in a New South Wales hospital between 1 July 2000 and 31 December 2007 was included in the analysis.
Outcome measure
First VTI procedure.
Results
VTI rates were lower in Aboriginal compared with non-Aboriginal children (incidence rate (IR), 4.3/1000 person-years; 95% CI 3.8 to 4.8 vs IR 5.8/1000 person-years; 95% CI 5.7 to 5.8). Overall, Aboriginal children were 28% less likely than non-Aboriginal children to have ventilation tubes inserted (age-adjusted and sex-adjusted rate ratios (RRs) 0.72; 95% CI 0.64 to 0.80). After adjusting additionally for geographical remoteness, Aboriginal children were 19% less likely to have ventilation tubes inserted (age-adjusted and sex-adjusted RR 0.81; 95% CI 0.73 to 0.91). After adjusting separately for private patient/health insurance status and area socioeconomic status, there was no significant difference (age-adjusted and sex-adjusted RR 0.96; 95% CI 0.86 to 1.08 and RR 0.93; 95% CI 0.83 to 1.04, respectively). In the fully adjusted model, there were no significant differences in VTI rates between Aboriginal and non-Aboriginal children (RR 1.06; 95% CI 0.94 to 1.19).
Conclusions
Despite a much higher prevalence of otitis media, Aboriginal children were less likely to receive VTI procedures than their non-Aboriginal counterparts; this inequality was largely explained by differences in socioeconomic status and geographical remoteness.
doi:10.1136/bmjopen-2013-003807
PMCID: PMC3845074  PMID: 24285631
Epidemiology; Public Health
7.  Breastfeeding Duration and Residential Isolation amid Aboriginal Children in Western Australia 
Nutrients  2012;4(12):2020-2034.
Objectives: To examine factors that impact on breastfeeding duration among Western Australian Aboriginal children. We hypothesised that Aboriginal children living in remote locations in Western Australia were breastfed for longer than those living in metropolitan locations. Methods: A population-based cross-sectional survey was conducted from 2000 to 2002 in urban, rural and remote settings across Western Australia. Cross-tabulations and multivariate logistic regression analyses were performed, using survey weights to produce unbiased estimates for the population of Aboriginal children. Data on demographic, maternal and infant characteristics were collected from 3932 Aboriginal birth mothers about their children aged 0–17 years (representing 22,100 Aboriginal children in Western Australia). Results: 71% of Aboriginal children were breastfed for three months or more. Accounting for other factors, there was a strong gradient for breastfeeding duration by remoteness, with Aboriginal children living in areas of moderate isolation being 3.2 times more likely to be breastfed for three months or more (p < 0.001) compared to children in metropolitan Perth. Those in areas of extreme isolation were 8.6 times more likely to be breastfed for three months or longer (p < 0.001). Conclusions: Greater residential isolation a protective factor linked to longer breastfeeding duration for Aboriginal children in our West Australian cohort.
doi:10.3390/nu4122020
PMCID: PMC3546620  PMID: 23363997
breastfeeding duration; Australian Aboriginal children; isolation
8.  Aboriginal birth cohort (ABC): a prospective cohort study of early life determinants of adiposity and associated risk factors among Aboriginal people in Canada 
BMC Public Health  2013;13:608.
Background
Aboriginal people living in Canada have a high prevalence of obesity, type 2 diabetes, and cardiovascular disease (CVD). To better understand the pre and postnatal influences on the development of adiposity and related cardio-metabolic factors in adult Aboriginal people, we will recruit and follow prospectively Aboriginal pregnant mothers and their children – the Aboriginal Birth Cohort (ABC) study.
Methods/design
We aim to recruit 300 Aboriginal pregnant mothers and their newborns from the Six Nations Reserve, and follow them prospectively to age 3 years. Key details of environment and health including maternal nutrition, glucose tolerance, physical activity, and weight gain will be collected. At birth, cord blood and placenta samples will be collected, as well as newborn anthropometric measurements. Mothers and offspring will be followed annually with serial measurements of diet and physical activity, growth trajectory, and adiposity.
Discussion
There is an urgent need to understand maternal and child factors that underlie the early development of adiposity and type 2 diabetes in Aboriginal people. The information generated from this cohort will assist the Six Nations community in developing interventions to prevent early adiposity in Aboriginal children.
doi:10.1186/1471-2458-13-608
PMCID: PMC3702421  PMID: 23800270
Aboriginal; Birth cohort; Early origins; Adiposity
9.  Oral health-related quality of life in a birth cohort of 32-year olds 
Objectives
To describe oral health-related quality of life (OHRQoL) among New Zealand adults and assess the relationship between clinical measures of oral health status and a well-established OHRQoL measure, controlling for sex, socioeconomic status (SES) and use of dental services.
Methods
A birth cohort of 924 dentate adults (participants in the Dunedin Multidisciplinary Health and Development Study) was systematically examined for dental caries, tooth loss, and periodontal attachment loss (CAL) at age 32 years. OHRQoL was measured using the 14-item Oral Health Impact Profile questionnaire (OHIP-14). The questionnaire also collected data on each study member’s occupation, self-rated oral health and reasons for seeing a dental care provider. SES was determined from each individual’s occupation at age 32 years.
Results
The mean total OHIP-14 score was 8.0 (SD 8.1); 23.4% of the cohort reported one or more OHIP problems ‘fairly often’ or ‘very often’. When the prevalence of impacts ‘fairly/very often’ was modeled using logistic regression, having untreated caries, two or more sites with CAL of 4+ mm and 1 or more teeth missing by age 32 years remained significantly associated with OHRQoL, after adjusting for sex and ‘episodic’ dental care. Multivariate analysis using Poisson regression determined that being in the low SES group was also associated with the mean number of impacts (extent) and the rated severity of impacts.
Conclusions
OHIP-14 scores were significantly associated with clinical oral health status indicators, independently of sex and socioeconomic inequalities in oral health. The prevalence of impacts (23.4%) in the cohort was significantly greater than age- and sex-standardized estimates from Australia (18.2%) and the UK (15.9%).
doi:10.1111/j.1600-0528.2007.00395.x
PMCID: PMC2288569  PMID: 18650957
adult; dental caries; oral health; Oral Health Impact Profile; periodontal diseases; prevalence; quality of life; tooth loss
10.  Adherence to management guidelines for growth faltering and anaemia in remote dwelling Australian Aboriginal infants and barriers to health service delivery 
Background
Remote dwelling Aboriginal infants from northern Australia have a high burden of disease and frequently use health services. Little is known about the quality of infant care provided by remote health services. This study describes the adherence to infant guidelines for anaemia and growth faltering by remote health staff and barriers to effective service delivery in remote settings.
Methods
A mixed method study drew data from 24 semi-structured interviews with clinicians working in two remote communities in northern Australia and a retrospective cohort study of Aboriginal infants from these communities, born 2004–2006 (n = 398). Medical records from remote health centres were audited. The main outcome measures were the period prevalence of infants with anaemia and growth faltering and management of these conditions according to local guidelines. Qualitative data assessed clinicians’ perspectives on barriers to effective remote health service delivery.
Results
Data from 398 health centre records were analysed. Sixty eight percent of infants were anaemic between six and twelve months of age and 42% had documented growth faltering by one year. Analysis of the growth data by the authors however found 86% of infants experienced growth faltering over 12 months. Clinical management and treatment completion was poor for both conditions. High staff turnover, fragmented models of care and staff poorly prepared for their role were barriers perceived by clinicians’ to impact upon the quality of service delivery.
Conclusion
Among Aboriginal infants in northern Australia, malnutrition and anaemia are common and occur early. Diagnosis of growth faltering and clinicians’ adherence to management guidelines for both conditions was poor. Antiquated service delivery models, organisation of staff and rapid staff turnover contributed to poor quality of care. Service redesign, education and staff stability must be a priority to redress serious deficits in quality of care provided for these infants.
doi:10.1186/1472-6963-13-250
PMCID: PMC3750842  PMID: 23819687
Aboriginal; Adherence; Anaemia; Australia; Barriers; Growth faltering; Infant; Management guidelines; Primary health care; Remote; Quality of care
11.  Enhanced reporting of deaths among Aboriginal and Torres Strait Islander peoples using linked administrative health datasets 
Background
Aboriginal and Torres Strait Islander peoples are under-reported in administrative health datasets in NSW, Australia. Correct reporting of Aboriginal and Torres Strait Islander peoples is essential to measure the effectiveness of policies and programmes aimed at reducing the health disadvantage experienced by Aboriginal and Torres Strait Islander peoples. This study investigates the potential of record linkage to enhance reporting of deaths among Aboriginal and Torres Strait Islander peoples in NSW, Australia.
Methods
Australian Bureau of Statistics death registration data for 2007 were linked with four population health datasets relating to hospitalisations, emergency department attendances and births. Reporting of deaths was enhanced from linked records using two methods, and effects on patterns of demographic characteristics and mortality indicators were examined.
Results
Reporting of deaths increased by 34.5% using an algorithm based on a weight of evidence of a person being Aboriginal or Torres Strait Islander, and by 56.6% using an approach based on 'at least one report' of a person being Aboriginal or Torres Strait Islander. The increase was relatively greater in older persons and those living in less geographically remote areas. Enhancement resulted in a reduction in the urban-remote differential in median age at death and increases in standardised mortality ratios particularly for chronic conditions.
Conclusions
Record linkage creates a statistical construct that helps to correct under-reporting of deaths and potential bias in mortality statistics for Aboriginal and Torres Strait Islander peoples.
doi:10.1186/1471-2288-12-91
PMCID: PMC3413579  PMID: 22747900
12.  "If you don't believe it, it won't help you": use of bush medicine in treating cancer among Aboriginal people in Western Australia 
Background
Little is known about the use of bush medicine and traditional healing among Aboriginal Australians for their treatment of cancer and the meanings attached to it. A qualitative study that explored Aboriginal Australians' perspectives and experiences of cancer and cancer services in Western Australia provided an opportunity to analyse the contemporary meanings attached and use of bush medicine by Aboriginal people with cancer in Western Australia
Methods
Data collection occurred in Perth, both rural and remote areas and included individual in-depth interviews, observations and field notes. Of the thirty-seven interviews with Aboriginal cancer patients, family members of people who died from cancer and some Aboriginal health care providers, 11 participants whose responses included substantial mention on the issue of bush medicine and traditional healing were selected for the analysis for this paper.
Results
The study findings have shown that as part of their healing some Aboriginal Australians use traditional medicine for treating their cancer. Such healing processes and medicines were preferred by some because it helped reconnect them with their heritage, land, culture and the spirits of their ancestors, bringing peace of mind during their illness. Spiritual beliefs and holistic health approaches and practices play an important role in the treatment choices for some patients.
Conclusions
Service providers need to acknowledge and understand the existence of Aboriginal knowledge (epistemology) and accept that traditional healing can be an important addition to an Aboriginal person's healing complementing Western medical treatment regimes. Allowing and supporting traditional approaches to treatment reflects a commitment by modern medical services to adopting an Aboriginal-friendly approach that is not only culturally appropriate but assists with the cultural security of the service.
doi:10.1186/1746-4269-6-18
PMCID: PMC2902429  PMID: 20569478
13.  Providing culturally appropriate mental health first aid to an Aboriginal or Torres Strait Islander adolescent: development of expert consensus guidelines 
Background
It is estimated that the prevalence of mental illness is higher in Aboriginal and Torres Strait Islander adolescents compared to non-Aboriginal adolescents. Despite this, only a small proportion of Aboriginal youth have contact with mental health services, possibly due to factors such as remoteness, language barriers, affordability and cultural sensitivity issues. This research aimed to develop culturally appropriate guidelines for anyone who is providing first aid to an Australian Aboriginal or Torres Strait Islander adolescent who is experiencing a mental health crisis or developing a mental illness.
Methods
A panel of Australian Aboriginal people who are experts in Aboriginal youth mental health, participated in a Delphi study investigating how members of the public can be culturally appropriate when helping an Aboriginal or Torres Strait Islander adolescent with mental health problems. The panel varied in size across the three sequential rounds, from 37–41 participants. Panellists were presented with statements about cultural considerations and communication strategies via online questionnaires and were encouraged to suggest additional content. All statements endorsed as either Essential or Important by ≥ 90% of panel members were written into a guideline document. To assess the panel members’ satisfaction with the research method, participants were invited to provide their feedback after the final survey.
Results
From a total of 304 statements shown to the panel of experts, 194 statements were endorsed. The methodology was found to be useful and appropriate by the panellists.
Conclusion
Aboriginal and Torres Strait Islander Youth mental health experts were able to reach consensus about what the appropriate communication strategies for providing mental health first aid to an Aboriginal and Torres Strait Islander adolescent. These outcomes will help ensure that the community provides the best possible support to Aboriginal adolescents who are developing mental illnesses or are in a mental health crisis.
doi:10.1186/1752-4458-8-6
PMCID: PMC3922159  PMID: 24467923
Aboriginal; Torres Strait Islander; Adolescent; Youth; Mental illness; Mental health; Communication; Delphi method; Expert consensus; Community guidelines
14.  Self-efficacy and self-rated oral health among pregnant aboriginal Australian women 
BMC Oral Health  2014;14:29.
Background
Self-efficacy plays an important role in oral health-related behaviours. There is little known about associations between self-efficacy and subjective oral health among populations at heightened risk of dental disease. This study aimed to determine if low self-efficacy was associated with poor self-rated oral health after adjusting for confounding among a convenience sample of pregnant women.
Methods
We used self-reported data from 446 Australian women pregnant with an Aboriginal child (age range 14–43 years) to evaluate self-rated oral health, self-efficacy and socio-demographic, psychosocial, social cognitive and risk factors. Hierarchical entry of explanatory variables into logistic regression models estimated prevalence odds ratios (POR) and 95% confidence intervals (95% CI) for fair or poor self-rated oral health.
Results
In an unadjusted model, those with low self-efficacy had 2.40 times the odds of rating their oral health as ‘fair’ or ‘poor’ (95% CI 1.54–3.74). Addition of socio-demographic factors attenuated the effect of low self-efficacy on poor self-rated oral health by 10 percent (POR 2.19, 95% CI 1.37–3.51). Addition of the psychosocial factors attenuated the odds by 17 percent (POR 2.07, 95% CI 1.28–3.36), while addition of the social cognitive variable fatalism increased the odds by 1 percent (POR 2.42, 95% CI 1.55–3.78). Inclusion of the behavioural risk factor ‘not brushing previous day’ attenuated the odds by 15 percent (POR 2.11, 95%CI 1.32–3.36). In the final model, which included all covariates, the odds were attenuated by 32 percent (POR 1.80, 95% CI 1.05, 3.08).
Conclusions
Low self-efficacy persisted as a risk indicator for poor self-rated oral health after adjusting for confounding among this vulnerable population.
doi:10.1186/1472-6831-14-29
PMCID: PMC3976034  PMID: 24690235
15.  Mortality in an Aboriginal Medical Service (Redfern) cohort 
Background
Published estimates of Aboriginal mortality and life expectancy (LE) for the eastern Australian states are derived from demographic modelling techniques to estimate the population and extent of under-recording of Aboriginality in death registration. No reliable empirical information on Aboriginal mortality and LE exists for New South Wales (NSW), the most populous Australian state in which 29% of Aboriginal people reside.
This paper estimates mortality and LE in a large, mainly metropolitan cohort of Aboriginal clients from the Aboriginal Medical Service (AMS) Redfern, Sydney, NSW.
Methods
Identifying information from patient records accrued by the AMS Redfern since 1980 of definitely Aboriginal clients, without distinction between Aboriginal and Torres Strait Islander (n=24,035), was extracted and linked to the National Death Index (NDI) at the Australian Institute of Health and Welfare (AIHW). Age-specific mortality rates and LEs for each sex were estimated using the AMS patient population as the denominator, discounted for deaths. Directly age-standardised mortality and LEs were estimated for 1995–1999, 2000–2004 and 2005–2009, along with 95% confidence intervals. Comparisons were made with other estimates of Aboriginal mortality and LE and with the total Australian population.
Results
Mortality declined in the AMS Redfern cohort over 1995–2009, and the decline occurred mostly in the ≤44 year age range. Male LE at birth was estimated to be 64.4 years (95%CI:62.6-66.1) in 1995–1999, 65.6 years (95%CI:64.1-67.1) in 2000–2004, and 67.6 years (95%CI:65.9-69.2) for 2005–2009. In females, these LE estimates were 69.6 (95%CI:68.0-71.2), 71.1 (95%CI:69.9-72.4), and 71.4 (95%CI:70.0-72.8) years. LE in the AMS cohort was 11 years lower for males and 12 years lower for females than corresponding all-Australia LEs for the same periods. These were similar to estimates for Australian Aboriginal people overall for the same period by the Aboriginal Burden of Disease for 2009, using the General Growth Balance (GGB) model approach, and by the Australian Bureau of Statistics (ABS) for 2005–2007. LE in the AMS cohort was somewhat lower than these estimates for NSW Aboriginal people, and higher than ABS 2005–2007 estimates for Aboriginal people from Northern Territory, South Australia, and Western Australia.
Conclusions
The AMS Redfern cohort has provided the first empirically based estimates of mortality and LE trends in a large sample of Aboriginal people from NSW.
doi:10.1186/1478-7954-11-2
PMCID: PMC3602118  PMID: 23391275
16.  Planning, Implementing, and Evaluating a Program to Address the Oral Health Needs of Aboriginal Children in Port Augusta, Australia 
Aboriginal Australian children experience profound oral health disparities relative to their non-Aboriginal counterparts. In response to community concerns regarding Aboriginal child oral health in the regional town of Port Augusta, South Australia, a child dental health service was established within a Community Controlled Aboriginal Health Service. A partnership approach was employed with the key aims of (1) quantifying rates of dental service utilisation, (2) identifying factors influencing participation, and (3) planning and establishing a program for delivery of Aboriginal children's dental services that would increase participation and adapt to community needs. In planning the program, levels of participation were quantified and key issues identified through semistructured interviews. After 3.5 years, the participation rate for dental care among the target population increased from 53 to 70 percent. Key areas were identified to encourage further improvements and ensure sustainability in Aboriginal child oral health in this regional location.
doi:10.1155/2012/496236
PMCID: PMC3346980  PMID: 22577401
17.  Hospital admissions before the age of 2 years in Western Australia. 
Archives of Disease in Childhood  1994;70(3):205-210.
A linked data file of birth records and hospital admissions was used to investigate inpatient hospital morbidity before 2 years of age for all non-Aboriginal and Aboriginal children born in Western Australia in 1986. Of the non-Aboriginal children, 31.8% were admitted to hospital at least once before the age of 2 years, with an overall admission rate of 526/1000 live births; the corresponding figures for Aboriginal children were 68.7% and 2797. The mean number of days in hospital for each non-Aboriginal child admitted was 7.4, and 26.5 for Aboriginal children. Of the total cohort, 21% of non-Aboriginal and 20% of Aboriginal children were admitted only once, and 4% of non-Aboriginal and 36% of Aboriginal children were admitted at least three times; 23% of non-Aboriginal and 24% of Aboriginal children were admitted for only one major disease category, and 1% of non-Aboriginal and 16% of Aboriginal children were in at least four categories. The highest admission rates and highest percentages of the cohort admitted were for gastrointestinal and respiratory diseases and social admissions. These results illustrate the importance for both descriptive and analytical research of relating admissions to hospital for the total population to the individual child, and of using clinically relevant disease classifications.
PMCID: PMC1029743  PMID: 8135564
18.  The Study of Environment on Aboriginal Resilience and Child Health (SEARCH): study protocol 
BMC Public Health  2010;10:287.
Background
Aboriginal Australians have a life expectancy more than ten years less than that of non-Aboriginal Australians, reflecting their disproportionate burden of both communicable and non-communicable disease throughout the lifespan. Little is known about the health and health trajectories of Aboriginal children and, although the majority of Aboriginal people live in urban areas, data are particularly sparse in relation to children living in urban areas.
Methods/Design
The Study of Environment on Aboriginal Resilience and Child Health (SEARCH) is a cohort study of Aboriginal children aged 0-17 years, from urban and large regional centers in New South Wales, Australia. SEARCH focuses on Aboriginal community identified health priorities of: injury; otitis media; vaccine-preventable conditions; mental health problems; developmental delay; obesity; and risk factors for chronic disease. Parents/caregivers and their children are invited to participate in SEARCH at the time of presentation to one of the four participating Aboriginal Community Controlled Health Organisations at Mount Druitt, Campbelltown, Wagga Wagga and Newcastle. Questionnaire data are obtained from parents/caregivers and children, along with signed permission for follow-up through repeat data collection and data linkage. All children have their height, weight, waist circumference and blood pressure measured and complete audiometry, otoscopy/pneumatic otoscopy and tympanometry. Children aged 1-7 years have speech and language assessed and their parents/caregivers complete the Parental Evaluation of Developmental Status. The Study aims to recruit 1700 children by the end of 2010 and to secure resources for long term follow up. From November 2008 to March 2010, 1010 children had joined the study. From those 446 children with complete data entry, participating children ranged in age from 2 weeks to 17 years old, with 144 aged 0-3, 147 aged 4-7, 75 aged 8-10 and 79 aged 11-17. 55% were male and 45% female.
Discussion
SEARCH is built on strong community partnerships, under Aboriginal leadership, and addresses community priorities relating to a number of under-researched areas. SEARCH will provide a unique long-term resource to investigate the causes and trajectories of health and illness in urban Aboriginal children and to identify potential targets for interventions to improve health.
doi:10.1186/1471-2458-10-287
PMCID: PMC2896939  PMID: 20507632
19.  Development of a reliable questionnaire to assist in the diagnosis of fetal alcohol spectrum disorders (FASD) 
BMC Pediatrics  2013;13:33.
Background
A battery of clinical assessments was used in the Lililwan* Project, Australia’s first population-based Fetal Alcohol Spectrum Disorders (FASD) prevalence study, conducted in the remote Fitzroy Valley, Western Australia. One objective was to develop and assess test-retest reliability of an acceptable questionnaire for collecting health information in remote Aboriginal communities feasible for use in the Lililwan Project.
Methods
A questionnaire was developed by paediatricians to assist in diagnosis of FASD. Content was based on a literature review of FASD diagnostic criteria, existing questionnaires and risk factors for FASD and birth defects. Aboriginal community members, including qualified Aboriginal language interpreters, adapted the questionnaire to ensure language and cultural components were appropriate for use in the Fitzroy Valley. Locally developed pictorial aids were used for gathering accurate information on alcohol use. Aboriginal ‘community navigators’ assisted researchers to translate the questions into Kimberley Kriol or local Aboriginal languages depending on participant preference.
A subset of 14 questions was assessed for test-retest reliability in 30 parents/carers of children in the Lililwan Project cohort, who were interviewed by one rater using the entire questionnaire, then by a second rater who repeated 14 critical questions at least 6 hours later.
Results
The full questionnaire contained 112 items and took 50 minutes to administer. For a subset of 14 items from the full questionnaire percent exact agreement between raters ranged from 59-100%, and was below 70% for only 1 question. Test-retest reliability was excellent (Kappa 0.81-1.00) for 5 items, substantial (Kappa 0.61-0.80) for 5 items, and moderate, fair or slight (Kappa ≤0.60) for the remaining 4 items tested. Test-retest reliability for questions relating to alcohol use in pregnancy was excellent. When questions had moderate, fair or slight agreement, information was obtained from alternate sources e.g. medical records. Qualitative feedback from parents/carers confirmed acceptability of the questionnaire.
Conclusions
This questionnaire had acceptable test-retest reliability and could be used to collect demographic, socio-cultural and biomedical information relevant to the diagnosis of FASD in Aboriginal communities throughout Australia and elsewhere. Community input is crucial when developing and administering questionnaires for use in cross-cultural contexts.
*Lililwan is a Kimberley Kriol word meaning ‘all the little ones’. Kimberley Kriol is the main language spoken by Aboriginal people in the Fitzroy Valley.
doi:10.1186/1471-2431-13-33
PMCID: PMC3680181  PMID: 23496974
Fetal alcohol syndrome (FAS); Fetal alcohol spectrum disorders (FASD); Aboriginal and Torres Strait Islander; Indigenous; Questionnaire development; Diagnosis; Reliability testing; Reproducibility of results; Test-retest; Percent exact agreement
20.  Dimensions of oral health related quality of life measured by EQ-5D+ and OHIP-14 
Background
The aims of the study were to compare the dimensions of oral-health-related quality-of-life measured by a generic health state measure, the EuroQol, and a specific oral health measure, the Oral Health Impact Profile.
Methods
Data were collected in 2001–02 from a random sample of South Australian dentists using mailed self-complete questionnaires. Dentists recorded the diagnosis of dental problems and provided patients with self-complete questionnaires to record the nature, severity and duration of symptoms using the EuroQol (EQ-5D+) and 14-item version of the Oral Health Impact Profile (OHIP-14) instruments.
Results
Data were available from 375 patients (response rate = 72%). The EuroQol items of mobility, self care and usual activities formed a separate cluster of variables, as did anxiety/depression and cognition, while pain clustered with items from the OHIP physical pain subscale. OHIP items tended to form clusters consistent with the subscales of social disability, physical disability, physical pain, functional limitation and psychological discomfort. The OHIP handicap items clustered between the OHIP social disability and physical disability subscales. The OHIP psychological disability items split between the social disability and psychological discomfort subscales.
Conclusions
The observed clusters of variables empirically supported most of the conceptual dimensions of the OHIP. Both instruments covered symptom experience of pain indicating overlapping domains. However there was partial separation of the generic and specific items, EuroQol covered daily activities such as self-care and usual activities and OHIP covered oral health-specific aspects of functional limitation and physical disability as well as psychological and social aspects of disability and handicap.
doi:10.1186/1477-7525-2-35
PMCID: PMC479699  PMID: 15248893
21.  Australian Aboriginal Birth Cohort study: follow-up processes at 20 years 
Background
In 1987, a prospective study of an Australian Aboriginal Birth Cohort was established focusing on the relationships of fetal and childhood growth with the risk of chronic adult disease. However as the study is being conducted in a highly marginalized population it is also an important resource for cross-sectional descriptive and analytical studies. The aim of this paper is to describe the processes of the third follow up which was conducted 20 years after recruitment at birth.
Methods
Progressive steps in a multiphase protocol were used for tracing, with modifications for the expected rural or urban location of the participants.
Results
Of the original 686 cohort participants recruited 68 were untraced and 27 were known to have died. Of the 591 available for examination 122 were not examined; 11 of these were refusals and the remainder were not seen for logistical reasons relating to inclement weather, mobility of participants and single participants living in very remote locations.
Conclusion
The high retention rate of this follow-up 20 years after birth recruitment is a testament to the development of successful multiphase protocols aimed at overcoming the challenges of tracing a cohort over a widespread remote area and also to the perseverance of the study personnel. We also interpret the high retention rate as a reflection of the good will of the wider Aboriginal community towards this study and that researchers interactions with the community were positive. The continued follow-up of this life course study now seems feasible and there are plans to trace and reexamine the cohort at age 25 years.
doi:10.1186/1472-698X-9-23
PMCID: PMC2761846  PMID: 19775475
22.  Influence of cigarette smoking on the overall perception of dental health among adults aged 20-79 years, United States, 1988-1994. 
Public Health Reports  2005;120(2):124-132.
OBJECTIVE: Investigation into the relationship between lifestyle factors (particularly cigarette smoking) and perceived oral health has been limited. Data from the third National Health and Nutrition Examination Survey (NHANES II), 1988-1994, were used to explore this relationship in a large sample of U.S. adults. METHODS: This study used data on 13,357 dentate participants in NHANES III aged 20-79 years. In NHANES III, information on perceived dental health, sociodemographic attributes, smoking status, frequency of dental visits, dental insurance, and general health perception were collected during a home interview, and oral health status was assessed at a mobile examination center. RESULTS: Overall, 34.4% of individuals in the study sample reported having an unfavorable perception of their dental health by qualifying it as "fair" or "poor." Furthermore, 46.6% of smokers had an unfavorable dental health perception, compared to 28.3% of non-smokers. An interaction between smoking and race/ethnicity was found in logistic regression modeling. Stratified results show that cigarette smoking was not a significant predictor for an unfavorable dental health perception among individuals who self-identified as Mexican American, but smoking was a significant predictor for an unfavorable dental health perception among those who identified as non-Hispanic black or non-Hispanic white. CONCLUSIONS: This is the first study to describe the effects of smoking on dental health perception while controlling for examined oral health status. Because perceived dental health is a potential indicator for dental care utilization, a better knowledge of the factors that influence dental health perception is not only important for dental services planning, but also for understanding oral health-related quality of life issues. Additionally, given that smoking may negatively affect dental health perception, these findings have potential implications for smoking cessation activities conducted by dental care providers.
PMCID: PMC1497695  PMID: 15842113
23.  Improvement of maternal Aboriginality in NSW birth data 
Background
The Indigenous population of Australia was estimated as 2.5% and under-reported. The aim of this study is to improve statistical ascertainment of Aboriginal women giving birth in New South Wales.
Methods
This study was based on linked birth data from the Midwives Data Collection (MDC) and the Registry of Births Deaths and Marriages (RBDM) of New South Wales (NSW). Data linkage was performed by the Centre for Health Record Linkage (CHeReL) for births in NSW for the period January 2001 to December 2005. The accuracy of maternal Aboriginal status in the MDC and RBDM was assessed by consistency, sensitivity and specificity. A new statistical variable, ASV, or Aboriginal Statistical Variable, was constructed based on Indigenous identification in both datasets. The ASV was assessed by comparing numbers and percentages of births to Aboriginal mothers with the estimates by capture-recapture analysis.
Results
Maternal Aboriginal status was under-ascertained in both the MDC and RBDM. The ASV significantly increased ascertainment of Aboriginal women giving birth and decreased the number of missing cases. The proportion of births to Aboriginal mothers in the non-registered birth group was significantly higher than in the registered group.
Conclusions
Linking birth data collections is a feasible method to improve the statistical ascertainment of Aboriginal women giving birth in NSW. This has ramifications for the ascertainment of babies of Aboriginal mothers and the targeting of appropriate services in pregnancy and early childhood.
doi:10.1186/1471-2288-12-8
PMCID: PMC3314542  PMID: 22289717
Birth; Aboriginality; data; Australia
24.  Estimates of cancer incidence, mortality and survival in aboriginal people from NSW, Australia 
BMC Cancer  2012;12:168.
Background
Aboriginal status has been unreliably and incompletely recorded in health and vital registration data collections for the most populous areas of Australia, including NSW where 29% of Australian Aboriginal people reside. This paper reports an assessment of Aboriginal status recording in NSW cancer registrations and estimates incidence, mortality and survival from cancer in NSW Aboriginal people using multiple imputation of missing Aboriginal status in NSW Central Cancer Registry (CCR) records.
Methods
Logistic regression modelling and multiple imputation were used to assign Aboriginal status to those records of cancer diagnosed from 1999 to 2008 with missing Aboriginality (affecting 12-18% of NSW cancers registered in this period). Estimates of incidence, mortality and survival from cancer in NSW Aboriginal people were compared with the NSW total population, as standardised incidence and mortality ratios, and with the non-Aboriginal population.
Results
Following imputation, 146 (12.2%) extra cancers in Aboriginal males and 140 (12.5%) in Aboriginal females were found for 1999-2007. Mean annual cancer incidence in NSW Aboriginal people was estimated to be 660 per 100,000 and 462 per 100,000, 9% and 6% higher than all NSW males and females respectively. Mean annual cancer mortality in NSW Aboriginal people was estimated to be 373 per 100,000 in males and 240 per 100,000 in females, 68% and 73% higher than for all NSW males and females respectively. Despite similar incidence of localised cancer, mortality from localised cancer in Aboriginal people is significantly higher than in non-Aboriginal people, as is mortality from cancers with regional, distant and unknown degree of spread at diagnosis. Cancer survival in Aboriginal people is significantly lower: 51% of males and 43% of females had died of the cancer by 5 years following diagnosis, compared to 36% and 33% of non-Aboriginal males and females respectively.
Conclusion
The present study is the first to produce valid and reliable estimates of cancer incidence, survival and mortality in Australian Aboriginal people from NSW. Despite somewhat higher cancer incidence in Aboriginal than in non-Aboriginal people, substantially higher mortality and lower survival in Aboriginal people is only partly explained by more advanced cancer at diagnosis.
doi:10.1186/1471-2407-12-168
PMCID: PMC3520119  PMID: 22559220
25.  Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start 
Background
Australian Aboriginal and Torres Strait Islander women are between two to five times more likely to die in childbirth than non-Aboriginal women, and two to three times more likely to have a low birthweight infant. Babies with a low birthweight are more likely to have chronic health problems in adult life. Currently, there is limited research evidence regarding effective interventions to inform new initiatives to strengthen antenatal care for Aboriginal families.
Method/Design
The Aboriginal Families Study is a cross sectional population-based study investigating the views and experiences of Aboriginal and non-Aboriginal women having an Aboriginal baby in the state of South Australia over a 2-year period. The primary aims are to compare the experiences and views of women attending standard models of antenatal care with those accessing care via Aboriginal Family Birthing Program services which include Aboriginal Maternal Infant Care (AMIC) Workers as members of the clinical team; to assess factors associated with early and continuing engagement with antenatal care; and to use the information to inform strengthening of services for Aboriginal families. Women living in urban, regional and remote areas of South Australia have been invited to take part in the study by completing a structured interview or, if preferred, a self-administered questionnaire, when their baby is between 4–12 months old.
Discussion
Having a baby is an important life event in all families and in all cultures. How supported women feel during pregnancy, how women and families are welcomed by services, how safe they feel coming in to hospitals to give birth, and what happens to families during a hospital stay and in the early months after the birth of a new baby are important social determinants of maternal, newborn and child health outcomes. The Aboriginal Families Study builds on consultation with Aboriginal communities across South Australia. The project has been implemented with guidance from an Aboriginal Advisory Group keeping community and policy goals in mind right from the start. The results of the study will provide a unique resource to inform quality improvement and strengthening of services for Aboriginal families.
doi:10.1186/1475-9276-12-41
PMCID: PMC3689616  PMID: 23767813
Antenatal care; Health inequalities; Indigenous health; Maternal health; Participatory research; Perinatal health outcomes

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