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1.  Socio-demographic factors associated with smoking and smoking cessation among 426,344 pregnant women in New South Wales, Australia 
BMC Public Health  2005;5:138.
This study explores the socio-demographic characteristics of pregnant women who continue to smoke during the pregnancy, and identifies the characteristics of the smokers who were likely to quit smoking during the pregnancy period.
This was secondary analysis of the New South Wales (NSW) Midwives Data Collection (MDC) 1999–2003, a surveillance system covering all births in NSW public and private hospitals, as well as home births. Bivariate and multiple logistic regression analyses were performed to explore the associations between socio-demographic characteristics and smoking behaviour during pregnancy.
Data from 426,344 pregnant women in NSW showed that 17.0% continued to smoke during pregnancy. The smoking rate was higher among teenage mothers, those with an Aboriginal (indigenous) background, and lower among more affluent and overseas-born mothers. This study also found that unbooked confinements, and lack of antenatal care in the first trimester were strongly associated with increased risk of smoking during pregnancy. About 4.0% of the smoking women reported they may quit smoking during their pregnancy. Findings showed that mothers born overseas, of higher socio-economic status, first time mothers and those who attended antenatal care early showed an increased likelihood of smoking cessation during pregnancy. Those who were heavy smokers were less likely to quit during pregnancy.
Although the prevalence of smoking during pregnancy has been declining, it remains a significant public health concern. Smoking cessation programs should target the population subgroups of women at highest risk of smoking and who are least likely to quit. Effective antismoking interventions could reduce the obstetric and perinatal complications of smoking in pregnancy.
PMCID: PMC1352372  PMID: 16371166
2.  Aboriginal Families Study: a population-based study keeping community and policy goals in mind right from the start 
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.
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.
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.
PMCID: PMC3689616  PMID: 23767813
Antenatal care; Health inequalities; Indigenous health; Maternal health; Participatory research; Perinatal health outcomes
3.  A retrospective population-based cohort study identifying target areas for prevention of acute lower respiratory infections in children 
BMC Public Health  2010;10:757.
Acute lower respiratory infections (ALRI) are a major cause of hospitalisation in young children. Many factors can lead to increased risk of ALRI in children and predispose a child to hospitalisation, but population attributable fractions for different risk factors and how these fractions differ between Indigenous and non-Indigenous children is unknown. This study investigates population attributable fractions of known infant and maternal risk factors for ALRI to inform prevention strategies that target high-risk groups or particular risk factors.
A retrospective population-based data linkage study of 245,249 singleton births in Western Australia. Population attributable fractions of known maternal and infant risk factors for hospitalisation with ALRI between 1996 and 2005 were calculated using multiple logistic regression.
The overall ALRI hospitalisation rate was 16.1/1,000 person-years for non-Aboriginal children and 93.0/1,000 for Aboriginal children. Male gender, being born in autumn, gestational age <33 weeks, and multiple previous pregnancies were significant risk factors for ALRI in both Aboriginal and non-Aboriginal children. In non-Aboriginal children, maternal smoking during pregnancy accounted for 6.3% (95%CI: 5.0, 7.6) of the population attributable fraction for ALRI, being born in autumn accounted for 12.3% (10.8, 13.8), being born to a mother with three or more previous pregnancies accounted for 15.4% (14.1, 17.0) and delivery by elective caesarean accounted for 4.1% (2.8, 5.3). In Aboriginal children, being born to a mother with three or more previous pregnancies accounted for 16.5% (11.8, 20.9), but remote location at birth accounted for 11.7% (8.5, 14.8), maternal age <20 years accounted for 11.2% (7.8, 14.5), and being in the most disadvantaged socio-economic group accounted for 18.4% (-6.5, 37.4) of the population attributable fraction.
The population attributable fractions estimated in this study should help in guiding public health interventions to prevent ALRI. A key risk factor for all children is maternal smoking during pregnancy, and multiple previous pregnancies and autumnal births are important high-risk groups. Specific key target areas are reducing elective caesareans in non-Aboriginal women and reducing teenage pregnancies and improving access to services and living conditions for the Aboriginal population.
PMCID: PMC3004840  PMID: 21138593
4.  Estimates of cancer incidence, mortality and survival in aboriginal people from NSW, Australia 
BMC Cancer  2012;12:168.
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.
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.
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.
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.
PMCID: PMC3520119  PMID: 22559220
5.  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.
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.
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.
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).
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.
PMCID: PMC3845074  PMID: 24285631
Epidemiology; Public Health
6.  Mortality in an Aboriginal Medical Service (Redfern) cohort 
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.
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.
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.
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.
PMCID: PMC3602118  PMID: 23391275
7.  Adjusting for under-identification of Aboriginal and/or Torres Strait Islander births in time series produced from birth records: Using record linkage of survey data and administrative data sources 
Statistical time series derived from administrative data sets form key indicators in measuring progress in addressing disadvantage in Aboriginal and Torres Strait Islander populations in Australia. However, inconsistencies in the reporting of Indigenous status can cause difficulties in producing reliable indicators. External data sources, such as survey data, provide a means of assessing the consistency of administrative data and may be used to adjust statistics based on administrative data sources.
We used record linkage between a large-scale survey (the Western Australian Aboriginal Child Health Survey), and two administrative data sources (the Western Australia (WA) Register of Births and the WA Midwives’ Notification System) to compare the degree of consistency in determining Indigenous status of children between the two sources. We then used a logistic regression model predicting probability of consistency between the two sources to estimate the probability of each record on the two administrative data sources being identified as being of Aboriginal and/or Torres Strait Islander origin in a survey. By summing these probabilities we produced model-adjusted time series of neonatal outcomes for Aboriginal and/or Torres Strait Islander births.
Compared to survey data, information based only on the two administrative data sources identified substantially fewer Aboriginal and/or Torres Strait Islander births. However, these births were not randomly distributed. Births of children identified as being of Aboriginal and/or Torres Strait Islander origin in the survey only were more likely to be living in urban areas, in less disadvantaged areas, and to have only one parent who identifies as being of Aboriginal and/or Torres Strait Islander origin, particularly the father. They were also more likely to have better health and wellbeing outcomes. Applying an adjustment model based on the linked survey data increased the estimated number of Aboriginal and/or Torres Strait Islander births in WA by around 25%, however this increase was accompanied by lower overall proportions of low birth weight and low gestational age babies.
Record linkage of survey data to administrative data sets is useful to validate the quality of recording of demographic information in administrative data sources, and such information can be used to adjust for differential identification in administrative data.
PMCID: PMC3493324  PMID: 22747850
8.  Disparities in cataract surgery between Aboriginal and non-Aboriginal people in New South Wales, Australia 
To investigate variation in rates of cataract surgery in New South Wales, Australia by area of residence for Aboriginal and non-Aboriginal adults.
Observational data linkage study of hospital admissions.
Two hundred eighty-nine thousand six hundred forty-six New South Wales residents aged 30 years and over admitted to New South Wales hospitals for 444 551 cataract surgery procedures between 2001 and 2008.
Analysis of linked routinely collected hospital data using direct standardization and multilevel negative binomial regression models accounting for clustering of individuals within Statistical Local Areas.
Main Outcome Measures
Age-standardized cataract surgery rates and adjusted rate ratios.
Aboriginal people had lower rates of cataract procedures than non-Aboriginal people of the same age and sex, living in the same Statistical Local Area (adjusted rate ratio 0.71, 95% confidence interval 0.68–0.75). There was significant variation in cataract surgery rates across Statistical Local Areas for both Aboriginal and non-Aboriginal people, with the disparity greater in major cities and less disadvantaged areas. Rates of surgery were lower for Aboriginal than non-Aboriginal people in most Statistical Local Areas, but in a few, the rates were similar or higher for Aboriginal people.
Aboriginal people in New South Wales received less cataract surgery than non-Aboriginal people, despite evidence of higher cataract rates. This disparity was greatest in urban and wealthier areas. Higher rates of surgery for Aboriginal people observed in some specific locations are likely to reflect the availability of public ophthalmology services, targeted services for Aboriginal people and higher demand for surgery in these populations.
PMCID: PMC4233999  PMID: 24299196
Aboriginal health; cataract surgery; data linkage; disadvantage
9.  Under-reporting of birth registrations in New South Wales, Australia 
To determine the rates of birth registration over a five-year period in New South Wales (NSW) and explore the factors associated with the rate of registration.
This is a cross-sectional study using linked population databases. The study population included all births of NSW residents in NSW between 2001 and 2005.
Birth registration rates in NSW were 82.66% in the year of birth, 93.19% in the first year, 94.02% in the second, 94.56% in the third and 95.08% in the fourth year after birth. The non-registration of births was mainly associated with such factors as neonatal and postneonatal death (adjusted OR = 3.84, 95% CI: 3.23-4.57); being Indigenous (adjusted OR = 3.26, 95% CI: 3.10-3.43); maternal age <25 or >39 years (adjusted OR = 2.81, 95% CI: 2.72-2.90); low birthweight (<2,500 grams) (adjusted OR = 1.79, 95% CI: 1.69-1.90); living in remote areas (adjusted OR = 1.57, 95% CI: 1.52-1.63); being born after the first quarter of year (adjusted OR = 1.08-1.56, 95% CI between 1.03-1.12 and 1.49-1.64); mother having more pregnancies (adjusted OR = 1.85-7.29, 95% CI between1.78-1.93 and 6.87-7.73). Mothers who were born overseas were more likely to register their births than those born in Australia (adjusted OR = 0.72, 95% CI: 0.69-0.75). Multiple births were more likely to be registered than singleton births (adjusted OR = 0.84, 95% CI: 0.76-0.92). About one-third of the non-registrations of births in NSW were explained by the risk factors. The reasons for the remaining non-registrations need to be investigated.
Of birth in NSW, 4.92% were not registered by the fourth year after birth.
PMCID: PMC3562517  PMID: 23234578
Birth; Registration; Factor; Australia
10.  ‘Doing the hard yards’: carer and provider focus group perspectives of accessing Aboriginal childhood disability services 
Despite a high prevalence of disability, Aboriginal Australians access disability services in Australia less than non-Aboriginal Australians with a disability. The needs of Aboriginal children with disability are particularly poorly understood. They can endure long delays in treatment which can impact adversely on development. This study sought to ascertain the factors involved in accessing services and support for Aboriginal children with a disability.
Using the focus group method, two community forums, one for health and service providers and one for carers of Aboriginal children with a disability, were held at an Aboriginal Community Controlled Health Service (ACCHS) in the Sydney, metropolitan area of New South Wales, Australia. Framework analysis was applied to qualitative data to elucidate key issues relevant to the dimensions of access framework. Independent coding consistency checks were performed and consensus of analysis verified by the entire research team, several of whom represented the local Aboriginal community.
Seventeen health and social service providers representing local area government and non-government-funded health and social service organisations and five carers participated in two separate forums between September and October 2011. Lack of awareness of services and inadequate availability were prominent concerns in both groups despite geographic proximity to a major metropolitan area with significant health infrastructure. Carers noted racism, insufficient or non-existent services, and the need for an enhanced role of ACCHSs and AHWs in disability support services. Providers highlighted logistical barriers and cultural and historical issues that impacted on the effectiveness of mainstream services for Aboriginal people.
Despite dedicated disability services in an urban community, geographic proximity does not mitigate lack of awareness and availability of support. This paper has enumerated a number of considerations to address provision of disability services in an urban Australian Aboriginal community including building expertise and specialist capacity within Aboriginal Health Worker positions and services.
Increasing awareness of services, facilitating linkages and referrals, eliminating complexities to accessing support, and working with families and Aboriginal community organisations within a framework of resilience and empowerment to ensure a relevant and acceptable model are necessary steps to improving support and care for Aboriginal children with a disability.
PMCID: PMC3765087  PMID: 23958272
Childhood disability; Aboriginal and Torres Strait Islander peoples; Early intervention; Focus groups
11.  A prospective cohort study of pregnancy risk factors and birth outcomes in Aboriginal women 
Aboriginal women have been identified as having poorer pregnancy outcomes than other Canadian women, but information on risk factors and outcomes has been acquired mostly from retrospective databases. We compared prenatal risk factors and birth outcomes of First Nations and Métis women with those of other participants in a prospective study.
During the 12-month period from July 1994 to June 1995, we invited expectant mothers in all obstetric practices affiliated with a single teaching hospital in Edmonton to participate. Women were recruited at their first prenatal visit and followed through delivery. Sociodemographic and clinical data were obtained by means of a patient questionnaire, and microbiological data were collected at 3 points during gestation: in the first and second trimesters and during labour. Our primary outcomes of interest were low birth weight (birth weight less than 2500 g), prematurity (birth at less than 37 weeks' gestation) and macrosomia (birth weight greater than 4000 g).
Of the 2047 women consecutively enrolled, 1811 completed the study through delivery. Aboriginal women accounted for 70 (3.9%) of the subjects who completed the study (45 First Nations women and 25 Métis women). Known risk factors for adverse pregnancy outcome were more common among Aboriginal than among non-Aboriginal women, including previous premature infant (21% v. 11%), smoking during the current pregnancy (41% v. 13%), presence of bacterial vaginosis in midgestation (33% v. 13%) and poor nutrition as measured by meal consumption. Although Aboriginal women were less likely than non-Aboriginal women to have babies of low birth weight (odds ratio [OR] 1.46, 95% confidence interval [CI] 0.52–4.15) or who were born prematurely (OR 1.45, 95% CI 0.57–3.72) and more likely to have babies with macrosomia (OR 2.04, 95% CI 1.03–4.03), these differences were lower and statistically nonsignificant after adjustment for smoking, cervicovaginal infection and income (adjusted OR for low birth weight 0.85, 95% CI 0.19–3.78; for prematurity 0.90, 95% CI 0.21–3.89; and for macrosomia 2.12, 95% CI 0.84-5.36).
After adjustment for potential confounding factors, we found no statistically significant relation between Aboriginal status and birth outcome.
PMCID: PMC516193  PMID: 15367460
12.  Risk of recurrence, subsequent mode of birth and morbidity for women who experienced severe perineal trauma in a first birth in New South Wales between 2000 –2008: a population based data linkage study 
Severe perineal trauma occurs in 0.5-10% of vaginal births and can result in significant morbidity including pain, dyspareunia and faecal incontinence. The aim of this study is to determine the risk of recurrence, subsequent mode of birth and morbidity for women who experienced severe perineal trauma during their first birth in New South Wales (NSW) between 2000 – 2008.
All singleton births recorded in the NSW Midwives Data Collection between 2000–2008 (n=510,006) linked to Admitted Patient Data were analysed. Determination of morbidity was based upon readmission to hospital within a 12 month time period following birth for a surgical procedure falling within four categories: 1. Vaginal repair, 2. Fistula repair, 3. Faecal and urinary incontinence repair, and 4. Rectal/anal repair. Women who experienced severe perineal trauma during their first birth were compared to women who did not.
2,784 (1.6%) primiparous women experienced severe perineal trauma during this period. Primiparous women experiencing severe perineal trauma were less likely to have a subsequent birth (56% vs 53%) compared to those not who did not (OR 0.9; CI 0.81-0.99), however there was no difference in the subsequent rate of elective caesarean section (OR 1.2; 0.95-1.54), vaginal birth (including instrumental birth) (OR 1.0; CI 0.81-1.17) or normal vaginal birth (excluding instrumental birth) (OR 1.0; CI 0.85-1.17). Women were no more likely to have a severe perineal tear in the second birth if they experienced this in the first (OR 0.9; CI 0.67-1.34). Women who had a severe perineal tear in their first birth were significantly more likely to have an ‘associated surgical procedure’ within the ≤12 months following birth (vaginal repair following primary repair, rectal/anal repair following primary repair, fistula repair and urinary/faecal incontinence repair) (OR 7.6; CI 6.21-9.22). Women who gave birth in a private hospital compared to a public hospital were more likely to have an ‘associated surgical procedure’ in the 12 months following the birth (OR 1.8; CI 1.54-1.97), regardless of parity, birth type and perineal status.
Primiparous women who experience severe perineal trauma are less likely to have a subsequent baby, more likely to have a related surgical procedure in the 12 months following the birth and no more likely to have an operative birth or another severe perineal tear in a subsequent birth. Women giving birth in a private hospital are more likely to have an associated surgical procedure in the 12 months following birth.
PMCID: PMC3635942  PMID: 23565655
Severe perineal trauma; Subsequent birth; Postpartum morbidities; Risk of recurrence
13.  Increasing rates of surgical treatment and preventing comorbidities may increase breast cancer survival for Aboriginal women 
BMC Cancer  2014;14:163.
Lower breast cancer survival has been reported for Australian Aboriginal women compared to non-Aboriginal women, however the reasons for this disparity have not been fully explored. We compared the surgical treatment and survival of Aboriginal and non-Aboriginal women diagnosed with breast cancer in New South Wales (NSW), Australia.
We analysed NSW cancer registry records of breast cancers diagnosed in 2001–2007, linked to hospital inpatient episodes and deaths. We used unconditional logistic regression to compare the odds of Aboriginal and non-Aboriginal women receiving surgical treatment. Breast cancer-specific survival was examined using cumulative mortality curves and Cox proportional hazards regression models.
Of the 27 850 eligible women, 288 (1.03%) identified as Aboriginal. The Aboriginal women were younger and more likely to have advanced spread of disease when diagnosed than non-Aboriginal women. Aboriginal women were less likely than non-Aboriginal women to receive surgical treatment (odds ratio 0.59, 95% confidence interval (CI) 0.42-0.86). The five-year crude breast cancer-specific mortality was 6.1% higher for Aboriginal women (17.7%, 95% CI 12.9-23.2) compared with non-Aboriginal women (11.6%, 95% CI 11.2-12.0). After accounting for differences in age at diagnosis, year of diagnosis, spread of disease and surgical treatment received the risk of death from breast cancer was 39% higher in Aboriginal women (HR 1.39, 95% CI 1.01-1.86). Finally after also accounting for differences in comorbidities, socioeconomic disadvantage and place of residence the hazard ratio was reduced to 1.30 (95% CI 0.94-1.75).
Preventing comorbidities and increasing rates of surgical treatment may increase breast cancer survival for NSW Aboriginal women.
PMCID: PMC3975643  PMID: 24606675
Australia/epidemiology; Breast Neoplasms/epidemiology; Female health services; Indigenous; Survival rate
14.  Under-ascertainment of Aboriginality in records of cardiovascular disease in hospital morbidity and mortality data in Western Australia: a record linkage study 
Measuring the real burden of cardiovascular disease in Australian Aboriginals is complicated by under-identification of Aboriginality in administrative health data collections. Accurate data is essential to measure Australia's progress in its efforts to intervene to improve health outcomes of Australian Aboriginals. We estimated the under-ascertainment of Aboriginal status in linked morbidity and mortality databases in patients hospitalised with cardiovascular disease.
Persons with public hospital admissions for cardiovascular disease in Western Australia during 2000-2005 (and their 20-year admission history) or who subsequently died were identified from linkage data. The Aboriginal status flag in all records for a given individual was variously used to determine their ethnicity (index positive, and in all records both majority positive or ever positive) and stratified by region, age and gender. The index admission was the baseline comparator.
Index cases comprised 62,692 individuals who shared a total of 778,714 hospital admissions over 20 years, of which 19,809 subsequently died. There were 3,060 (4.9%) persons identified as Aboriginal on index admission. An additional 83 (2.7%) Aboriginal cases were identified through death records, increasing to 3.7% when cases with a positive Aboriginal identifier in the majority (≥50%) of previous hospital admissions over twenty years were added and by 20.8% when those with a positive flag in any record over 20 years were incorporated. These results equated to underestimating Aboriginal status in unlinked index admission by 2.6%, 3.5% and 17.2%, respectively. Deaths classified as Aboriginal in official records would underestimate total Aboriginal deaths by 26.8% (95% Confidence Interval 24.1 to 29.6%).
Combining Aboriginal determinations in morbidity and official death records increases ascertainment of unlinked cardiovascular morbidity in Western Australian Aboriginals. Under-identification of Aboriginal status is high in death records.
PMCID: PMC3024993  PMID: 21192809
15.  New South Wales annual vaccine-preventable disease report, 2012 
We aim to describe the epidemiology of selected vaccine-preventable diseases in New South Wales (NSW) for 2012. Data from the NSW Notifiable Conditions Information Management System were analysed by: local health district of residence, age, Aboriginality, vaccination status and organism, where available. Risk factor and vaccination status data were collected by public health units for cases following notification under the NSW Public Health Act 2010. The largest outbreak of measles since 1998 was reported in 2012. Pacific Islander and Aboriginal people were at higher risk as were infants less than 12 months of age. Notifications of invasive pneumococcal disease (IPD) in children less than five years declined; however, the overall number of notifications for IPD increased. Mumps case notifications were also elevated. There were no Haemophilus influenzae type b case notifications in children less than five years of age for the first time since the vaccine was introduced. Invasive meningococcal disease case notifications were at their lowest rates since case notification began in 1991. Case notification rates for other selected vaccine-preventable diseases remained stable. Vaccine-preventable disease control is continually strengthening in NSW with notable successes in invasive bacterial infections. However, strengthening measles immunization in Pacific Islander and Aboriginal communities remains essential to maintain measles elimination.
PMCID: PMC4113660  PMID: 25077033
16.  Invasive pneumococcal disease in New South Wales, Australia: reporting Aboriginal and Torres Strait Islander status improves epidemiology 
The aim of this work was to determine the feasibility of improving Aboriginal and Torres Strait Islander status recording for notifiable diseases using all Invasive Pneumococcal Disease (IPD) notifications in a regional area of New South Wales, Australia.
In Australia people with IPD are nearly always admitted to hospital and their Aboriginal and Torres Strait Islander status is recorded. Aboriginal and Torres Strait Islander status was determined for IPD notifications by referring to the routine hospital admission data in a regional area of New South Wales, Australia.
There were 234 notifications in the regional area of Hunter New England during the period 2007–2009. Initially, 168 (72%) notifications had Aboriginal and Torres Strait Islander status recorded. After referring to the routine hospital admission data, the recorded status increased to 232 (99%). Updating the surveillance data required less than five minutes per notification.
Referring to routine hospital admission data proved a useful and time-efficient surveillance strategy to increase the proportion of notifications with Aboriginal and Torres Strait Islander status. These data can then be used to better understand the current epidemiology of IPD. Aboriginal and Torres Strait Islander children aged 0–4 years have a two- to threefold higher rate of invasive pneumococcal disease than non-Aboriginal children, thus high levels of timely pneumococcal immunization coverage remain important for young Aboriginal and Torres Strait Islander children.
PMCID: PMC3729061  PMID: 23908887
17.  Investigating linkage rates among probabilistically linked birth and hospitalization records 
With the increasing use of probabilistically linked administrative data in health research, it is important to understand whether systematic differences occur between the populations with linked and unlinked records. While probabilistic linkage involves combining records for individuals, population perinatal health research requires a combination of information from both the mother and her infant(s). The aims of this study were to (i) describe probabilistic linkage for perinatal records in New South Wales (NSW) Australia, (ii) determine linkage proportions for these perinatal records, and (iii) assess records with linked mother and infant hospital-birth record, and unlinked records for systematic differences.
This is a population-based study of probabilistically linked statutory birth and hospital records from New South Wales, Australia, 2001-2008. Linkage groups were created where the birth record had complete linkage with hospital admission records for both the mother and infant(s), partial linkage (the mother only or the infant(s) only) or neither. Unlinked hospital records for mothers and infants were also examined. Rates of linkage as a percentage of birth records and descriptive statistics for maternal and infant characteristics by linkage groups were determined.
Complete linkage (mother hospital record – birth record – infant hospital record) was available for 95.9% of birth records, partial linkage for 3.6%, and 0.5% with no linked hospital records (unlinked). Among live born singletons (complete linkage = 96.5%) the mothers without linked infant records (1.6%) had slightly higher proportions of young, non-Australian born, socially disadvantaged women with adverse pregnancy outcomes. The unlinked birth records (0.4%) had slightly higher proportions of nulliparous, older, Australian born women giving birth in private hospitals by caesarean section. Stillbirths had the highest rate of unlinked records (3-4%).
This study shows that probabilistic linkage of perinatal records can achieve high, representative levels of complete linkage. Records for mother’s that did not link to infant records and unlinked records had slightly different characteristics to fully linked records. However, these groups were small and unlikely to bias results and conclusions in a substantive way. Stillbirths present additional challenges to the linkage process due to lower rates of linkage for lower gestational ages, where most stillbirths occur.
PMCID: PMC3533905  PMID: 23009079
Probabilistic record linkage; Pregnancy; Administrative health data; International classification of diseases
18.  Temporal trends in Inuit, First Nations and non-Aboriginal birth outcomes in rural and northern Quebec 
International Journal of Circumpolar Health  2012;71:10.3402/ijch.v71i0.18791.
The objective was to assess trends in Inuit, First Nations and non-Aboriginal birth outcomes in the rural and northern regions of Quebec.
Study design and methods
In a birth cohort-based study of all births to residents of rural and northern Quebec from 1991 through 2000 (n = 177,193), we analyzed birth outcomes and infant mortality for births classified by maternal mother tongue (Inuit, First Nations or non-Aboriginal) and by community type (predominantly First Nations, Inuit or non-Aboriginal).
From 1991–1995 to 1996–2000, there was a trend of increasing rates of preterm birth for all 6 study groups. In all rural and northern areas, low birth weight rates increased significantly only for the Inuit mother tongue group [RR1.45 (95% CI 1.05–2.01)]. Stillbirth rates showed a non-significant increase for the Inuit mother tongue group [RR1.76 (0.64–4.83)]. Neonatal mortality rates decreased significantly in the predominantly non-Aboriginal communities and in the non-Aboriginal mother tongue group [RR0.78 (0.66–0.92)], and increased non-significantly for the First Nations mother tongue group [RR2.17 (0.71–6.62)]. Perinatal death rates increased for the First Nations mother tongue grouping in northern areas [RR2.19 (0.99–4.85)].
There was a disconcerting rise of some mortality outcomes for births to First Nations and Inuit mother tongue women and to women in predominantly First Nations and Inuit communities, in contrast to some improvements for births to non-Aboriginal mother tongue women and to women in predominantly non-Aboriginal communities in rural or northern Quebec, indicating a need for improving perinatal and neonatal health for Aboriginal populations in rural and northern regions.
PMCID: PMC3417705  PMID: 22973566
Aboriginal health; trends; preterm birth; perinatal mortality; infant mortality
19.  Late entry to antenatal care in New South Wales, Australia 
This study aimed to assess the prevalence of women who entered antenatal care (ANC) late and to identify factors related to the late entry to ANC in New South Wales (NSW) in 2004.
The NSW Midwives Data Collection contained data of 85,034 women who gave birth in 2004. Data were downloaded using SAS and transferred to STATA 8.0. Entering ANC after 12 weeks of gestation was classified as late. The Andersen Health Seeking Behaviour Model was used for selection and analyses of related factors. Regression and hierarchical analyses were used to identify significant factors and their relative contributions to the variation of pregnancy duration at entry to ANC.
41% of women commenced ANC after 12 weeks of gestation. Inequality existed between groups of women with predisposing characteristics and enabling resources contributed more to the variation in pregnancy duration at entry to ANC than needs. The groups of women with highest risk were teenagers, migrants from developing countries, women living in Western Sydney, Aboriginal and Torres Strait Islanders, women with three or more previous pregnancies and heavy smokers. The high risk groups with largest number of women were migrants from developing countries and women living in Western Sydney.
A large number of women in NSW entered ANC late in their pregnancies. Efforts to increase early entry to ANC should be targeted on identified high risk groups of women.
PMCID: PMC1562358  PMID: 16916473
20.  A Guide for Health Professionals Working with Aboriginal Peoples: Executive Summary 
to provide Canadian health professionals with a network of information and recommendations regarding Aboriginal health.
health professionals working with Aboriginal individuals and communities in the area of women’s health care.
improved health status of Aboriginal peoples in Canada.
Appropriateness and accessibility of women’s health services for Aboriginal peoples.
Improved communication and clinical skills of health professionals in the area of Aboriginal health.
Improved quality of relationship between health professionals and Aboriginal individuals and communities.
Improved quality of relationship between health care professionals and Aboriginal individuals and communities.
recommendations are based on expert opinion and a review of the literature. Published references were identified by a Medline search of all review articles, randomized clinical control trials, meta-analyses, and practice guidelines from 1966 to February 1999, using the MeSH headings “Indians, North American or Eskimos” and “Health.”* Subsequently published articles were brought to the attention of the authors in the process of writing and reviewing the document. Ancillary and unpublished references were recommended by members of the SOGC Aboriginal Health Issues Committee and the panel of expert reviewers.
information collected was reviewed by the principal author. The social, cultural, political, and historic context of Aboriginal peoples in Canada, systemic barriers regarding the publication of information by Aboriginal authors, the diversity of Aboriginal peoples in Canada, and the need for a culturally appropriate and balanced presentation were carefully considered in addition to more traditional scientific evaluation. The majority of information collected consisted of descriptive health and social information and such evaluation tools as the evidence guidelines of the Canadian Task Force on the Periodic Health exam were not appropriate.
Benefits, costs, and harms
utilization of the information and recommendations by Canadian health professionals will enhance understanding, communication, and clinical skills in the area of Aboriginal health. The resulting enhancement of collaborative relationships between Aboriginal peoples and their women’s health providers may contribute to health services that are more appropriate, effective, efficient, and accessible for Aboriginal peoples in Canada. The educational process may require an initial investment of time from the health professional.
Recommendations were grouped according to four themes: sociocultural context, health concerns, cross-cultural understanding, and Aboriginal health resources. Health professionals are encouraged to learn the appropriate names, demographics, and traditional geographic territories and language groups of the various Aboriginal groups in Canada. In addition, sensitivity to the impact of colonization and current socioeconomic challenges to the health status of Aboriginal peoples is warranted. Health services for Aboriginal peoples should take place as close to home as possible. Governmental obligations and policies regarding determination are recognized. With respect to health concerns, holistic definitions of health, based on Aboriginal perspectives, are put forward. Aboriginal peoples continue to experience a disproportionate burden of health problems. Health professionals are encouraged to become familiar with several key areas of morbidity and mortality. Relationships between Aboriginal peoples and their care providers need to be based on a foundation of mutual respect. Gaps and barriers in the current health care system for Aboriginal peoples are identified. Health professionals are encouraged to work with Aboriginal individuals and communities to address these gaps and barriers. Aboriginal peoples require culturally appropriate health care, including treatment in their own languages when possible. This may require interpreters or Aboriginal health advocates. Health professionals are encouraged to recognize the importance of family and community roles, and to respect traditional medicines and healers. Health professionals can develop their sensitivities towards Aboriginal peoples by participating in workshops, making use of educational resources, and by spending time with Aboriginal peoples in their communities. Aboriginal communities and health professionals are encouraged to support community-based, community-directed health services and health research for Aboriginal peoples. In addition, the education of more Aboriginal health professionals is essential. The need for a preventative approach to health programming in Aboriginal communities is stressed.
recommendations were reviewed and revised by the SOGC Aboriginal Health Issues Committee, a panel of expert reviewers, and the SOGC Council. In addition, this document was also reviewed and supported by the Assembly of First Nations, Canadian Institute of Child Health, Canadian Paediatric Society, College of Family Physicians of Canada, Congress of Aboriginal Peoples, Federation of Medical Women of Canada, Inuit Tapirisat of Canada, Metis National Council, National Indian and Inuit Community Health Representatives Organization, and Pauktuutit Inuit Women’s Association.
Society of Obstetricians and Gynaecologists of Canada.
PMCID: PMC3653835  PMID: 23682204 CAMSID: cams2752
21.  The Study of Environment on Aboriginal Resilience and Child Health (SEARCH): study protocol 
BMC Public Health  2010;10:287.
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.
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.
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.
PMCID: PMC2896939  PMID: 20507632
22.  Enhanced reporting of deaths among Aboriginal and Torres Strait Islander peoples using linked administrative health datasets 
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.
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.
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.
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.
PMCID: PMC3413579  PMID: 22747900
23.  The quality of Indigenous identification in administrative health data in Australia: insights from studies using data linkage 
Missing or incorrect Indigenous status in health records hinders monitoring of Indigenous health indicators. Linkage of administrative data has been used to improve the ascertainment of Indigenous status. Data linkage was pioneered in Western Australia (WA) and is now being used in other Australian states. This systematic review appraises peer-reviewed Australian studies that used data linkage to elucidate the impact of under-ascertainment of Indigenous status on health indicators.
A PubMed search identified eligible studies that used Australian linked data to interrogate Indigenous identification using more than one identifier and interrogated the impact of the different identifiers on estimation of Indigenous health indicators.
Eight papers were included, five from WA and three from New South Wales (NSW). The WA papers included a self-identified Indigenous community cohort and showed improved identification in hospital separation data after 2000. In CVD hospitalised patients (2000–05), under-identification was greater in urban residents, older people and socially more advantaged Indigenous people, with varying algorithms giving different estimates of under-count. Age-standardised myocardial infarction incidence rates (2000–2004) increased by about 10%-15% with improved identification. Under-ascertainment of Indigenous identification overestimated secular improvements in life expectancy and mortality whereas correcting infectious disease notifications resulted in lower Indigenous/ non-Indigenous rate ratios. NSW has a history of poor Indigenous identification in administrative data systems, but the NSW papers confirmed the usefulness of data linkage for improving Indigenous identification and the potential for very different estimates of Indigenous disease indicators depending upon the algorithm used for identification.
Under-identification of Indigenous status must be addressed in health analyses concerning Indigenous health differentials – they cannot be ignored or wished away. This problem can be substantially diminished through data linkage. Under-identification of Indigenous status impacts differently in different disease contexts, generally resulting in under-estimation of absolute and relative Indigenous health indicators, but may perversely overestimate Indigenous rates and differentials in the setting of stigma-associated conditions such as sexually-transmitted and blood-borne virus infections. Under-numeration in Census surveys also needs consideration to address the added problem of denominator undercounts.
PMCID: PMC3536611  PMID: 23157943
24.  Mortality after admission for acute myocardial infarction in Aboriginal and non-Aboriginal people in New South Wales, Australia: a multilevel data linkage study 
BMC Public Health  2012;12:281.
Heart disease is a leading cause of the gap in burden of disease between Aboriginal and non-Aboriginal Australians. Our study investigated short- and long-term mortality after admission for Aboriginal and non-Aboriginal people admitted with acute myocardial infarction (AMI) to public hospitals in New South Wales, Australia, and examined the impact of the hospital of admission on outcomes.
Admission records were linked to mortality records for 60047 patients aged 25–84 years admitted with a diagnosis of AMI between July 2001 and December 2008. Multilevel logistic regression was used to estimate adjusted odds ratios (AOR) for 30- and 365-day all-cause mortality.
Aboriginal patients admitted with an AMI were younger than non-Aboriginal patients, and more likely to be admitted to lower volume, remote hospitals without on-site angiography. Adjusting for age, sex, year and hospital, Aboriginal patients had a similar 30-day mortality risk to non-Aboriginal patients (AOR: 1.07; 95% CI 0.83-1.37) but a higher risk of dying within 365 days (AOR: 1.34; 95% CI 1.10-1.63). The latter difference did not persist after adjustment for comorbid conditions (AOR: 1.12; 95% CI 0.91-1.38). Patients admitted to more remote hospitals, those with lower patient volume and those without on-site angiography had increased risk of short and long-term mortality regardless of Aboriginal status.
Improving access to larger hospitals and those with specialist cardiac facilities could improve outcomes following AMI for all patients. However, major efforts to boost primary and secondary prevention of AMI are required to reduce the mortality gap between Aboriginal and non-Aboriginal people.
PMCID: PMC3481361  PMID: 22490109
Hospital performance; Acute myocardial infarction; Ischaemic heart disease; Aboriginal health; Health outcomes; Multilevel modelling; Data linkage
25.  Epidemiology and trends for Caesarean section births in New South Wales, Australia: A population-based study 
Caesarean section (CS) rates around the world have been increasing and in Australia have reached 30% of all births. Robson's Ten-Group Classification System (10-group classification) provides a clinically relevant classification of CS rates that provides a useful basis for international comparisons and trend analyses. This study aimed to investigate trends in CS rates in New South Wales (NSW), including trends in the components of the 10-group classification.
We undertook a cross-sectional study using data from the Midwives Data Collection, a state-wide surveillance system that monitors patterns of pregnancy care, services and pregnancy outcomes in New South Wales, Australia. The study population included all women giving birth between 1st January 1998 and 31st December 2008. Descriptive statistics are presented including age-standardised CS rates, annual percentage change as well as regression analyses.
From 1998 to 2008 the CS rate in NSW increased from 19.1 to 29.5 per 100 births. There was a significant average annual increase in primary 4.3% (95%CI 3.0-5.7%) and repeat 4.8% (95% CI 3.9-5.7%) CS rates from 1998 to 2008. After adjusting for maternal and pregnancy factors, the increase in CS delivery over time was maintained. When examining CS rates classified according to the 10-group classification, the greatest contributors to the overall CS rate and the largest annual increases occurred among nulliparae at term having elective CS and multipara having elective repeat CS.
Given that the increased CS rate cannot be explained by known and collected maternal or pregnancy characteristics, the increase may be related to differences in clinical decision making or maternal request. Future efforts to reduce the overall CS rate should be focussed on reducing the primary CS rate.
PMCID: PMC3037931  PMID: 21251270

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