Dataset Information

Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort.

ABSTRACT:

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 (347 sq 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.

SUBMITTER: Lawrance M

PROVIDER: S-EPMC3942517 | biostudies-literature | 2014 Feb

REPOSITORIES: biostudies-literature

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Publications

Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort.

Lawrance Megan M Sayers Susan M SM Singh Gurmeet R GR

BMC medical research methodology 20140226

<h4>Background</h4>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.<h4>Methods</h4>Participants were 686 babies enrolled between January 1987 and Marc ...[more]

PMID: 24568142

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Project description:PurposeThe South Australian Aboriginal Birth Cohort (SAABC) is a prospective, longitudinal birth cohort established to: (1) estimate Aboriginal child dental disease compared with population estimates; (2) determine the efficacy of an early childhood caries intervention in early versus late infancy; (3) examine if efficacy was sustained over time and; (4) document factors influencing social, behavioural, cognitive, anthropometric, dietary and educational attainment over time.ParticipantsThe original SAABC comprised 449 women pregnant with an Aboriginal child recruited February 2011 to May 2012. At child age 2 years, 324 (74%) participants were retained, at age 3 years, 324 (74%) participants were retained and at age 5 years, 299 (69%) participants were retained. Fieldwork for follow-up at age 7 years is underway, with funding available for follow-up at age 9 years.Findings to dateAt baseline, 53% of mothers were aged 14-24 years and 72% had high school or less educational attainment. At age 3 years, dental disease experience was higher among children exposed to the intervention later rather than earlier in infancy. The effect was sustained at age 5 years, but rates were still higher than general child population estimates. Experiences of racism were high among mothers, with impacts on both tooth brushing and toothache. Compared with population estimates, levels of self-efficacy and self-rated oral health of mothers at baseline were low.Future plansOur data have contributed to a better understanding of the environmental, behavioural, dietary, biological and psychosocial factors contributing to Aboriginal child oral and general health, and social and emotional well-being. This is beneficial in charting the trajectory of cohort participants' health and well-being overtime, particularly in identifying antecedents of chronic diseases which are highly prevalent among Aboriginal Australians. Funding for continued follow-up of the cohort will be sought.Trial registration numberACTRN12611000111976; Post-results.

Project description:BACKGROUND: Investment in strategies to promote 'a healthy start to life' has been identified as having the greatest potential to reduce health inequalities across the life course. The aim of this study was to examine social determinants of low birthweight in an Australian population-based birth cohort and consider implications for health policy and health care systems. METHODS: Population-based survey distributed by hospitals and home birth practitioners to >8000 women six months after childbirth in two states of Australia. Participants were women who gave birth to a liveborn infant in Victoria and South Australia in September/October 2007. Main outcome measures included stressful life events and social health issues, perceived discrimination in health care settings, infant birthweight. RESULTS: 4,366/8468 (52%) of eligible women returned completed surveys. Two-thirds (2912/4352) reported one or more stressful life events or social health issues during pregnancy. Women reporting three or more social health issues (18%, 768/4352) were significantly more likely to have a low birthweight infant (< 2500 grams) after controlling for smoking and other socio-demographic covariates (Adj OR = 1.77, 95% CI 1.1-2.8). Mothers born overseas in non-English speaking countries also had a higher risk of having a low birthweight infant (Adj OR = 1.85, 95% CI 1.2-2.9). Women reporting three or more stressful life events/social health issues were more likely to attend antenatal care later in pregnancy (OR = 2.06, 95% CI 1.3-3.1), to have fewer antenatal visits (OR = 2.17, 95% CI 1.4-3.4) and to experience discrimination in health care settings (OR = 2.69, 95% CI 2.2-3.3). CONCLUSIONS: There is a window of opportunity in antenatal care to implement targeted preventive interventions addressing potentially modifiable risk factors for poor maternal and infant outcomes. Developing the evidence base and infrastructure necessary in order for antenatal services to respond effectively to the social circumstances of women's lives is long overdue.

Project description:AimsLimited information exists about the prevalence of psychiatric illness for Indigenous Australians. This study examines the prevalence of diagnosed psychiatric disorders in Indigenous Australians and compares this to non-Indigenous Australians. The aims were to: (1) determine prevalence rates for psychiatric diagnoses for Indigenous Australians admitted to hospital; and (2) examine whether the profile of psychiatric diagnoses for Indigenous Australians was different compared with non-Indigenous Australians.MethodsA birth cohort design was adopted, with the population consisting of 45 141 individuals born in the Australian State of Queensland in 1990 (6.3% Indigenous). Linked administrative data from Queensland Health hospital admissions were used to identify psychiatric diagnoses from age 4/5 to 23/24 years. Crude lifetime prevalence rates of psychiatric diagnoses for Indigenous and non-Indigenous individuals were derived from the hospital admissions data. The cumulative incidence of psychiatric diagnoses was modelled separately for Indigenous and non-Indigenous individuals. Logistic regression was used to model differences between Indigenous and non-Indigenous psychiatric presentations while controlling for sociodemographic characteristics.ResultsThere were 2783 (6.2%) individuals in the cohort with a diagnosed psychiatric disorder from a hospital admission. The prevalence of any psychiatric diagnosis at age 23/24 years was 17.2% (491) for Indigenous Australians compared with 5.4% (2292) for non-Indigenous Australians. Indigenous individuals were diagnosed earlier, with overrepresentation in psychiatric illness becoming more pronounced with age. Indigenous individuals were overrepresented in almost all categories of psychiatric disorder and this was most pronounced for substance use disorders (SUDs) (12.2 v. 2.6% of Indigenous and non-Indigenous individuals, respectively). Differences between Indigenous and non-Indigenous Australians in the likelihood of psychiatric disorders were not statistically significant after controlling for sociodemographic characteristics, except for SUDs.ConclusionsThere is significant inequality in psychiatric morbidity between Indigenous and non-Indigenous Australians across most forms of psychiatric illness that is evident from an early age and becomes more pronounced with age. SUDs are particularly prevalent, highlighting the importance of appropriate interventions to prevent and address these problems. Inequalities in mental health may be driven by socioeconomic disadvantage experienced by Indigenous individuals.

Project description:BACKGROUND:The preterm birth rate is rising in high-income countries and is associated with increased mortality and morbidity. Although the risks increase with greater prematurity and risk factors have been found to vary with gestational age and labour onset, few studies have focused on the myriad pathways to extreme preterm birth (20-27 weeks' gestation). The current study investigated trends in extreme preterm birth by labour onset type and examined the antecedent risks to further our understanding around the identification of high-risk pregnancies. METHODS:Retrospective cohort study including all singleton extreme preterm births in Western Australia between 1986 and 2010. De-identified data from six core population health datasets were linked and used to ascertain extreme preterm births (excluding medical terminations and birth defects) after spontaneous onset of labour, preterm pre-labour rupture of membranes, and medically indicated labour onset. Trends over time in extreme preterm birth were analysed using linear regression. Multivariable regression techniques were used to assess the relative risks associated with each salient, independent risk factor and to calculate Population Attributable Risks (PARs). RESULTS:The extreme preterm birth rate including medical terminations and birth defects significantly increased over time whereas the extreme preterm birth rate excluding medical terminations and birth defects did not change. After medical terminations and birth defects were excluded, the rate of medically indicated extreme preterm births significantly increased over time whereas the rate of preterm pre-labour rupture of membranes extreme preterm births significantly reduced, and the rate of spontaneous extreme preterm births did not significantly change. In the multivariate analyses, factors associated with placental dysfunction accounted for >10% of the population attributable risk within each labour onset type. CONCLUSIONS:First study to show that the increase in extreme preterm birth in high-income jurisdiction is no longer evident after medical terminations and birth defects are excluded. Interventions that identify and target women at risk of placental dysfunction presents the greatest opportunity to reduce extreme preterm births.

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Project description:IntroductionPerinatal outcomes for singleton pregnancies are poorer, on average, for Aboriginal people than non-Aboriginal people, but little is known about Aboriginal multifetal pregnancies. Yet multifetal pregnancies and births are often more complicated and have poorer outcomes than singleton pregnancies. We describe the pregnancies, births and perinatal outcomes for Aboriginal twins born in Western Australia (WA) and New South Wales (NSW) with comparisons to Aboriginal singletons in both states and to non-Aboriginal births in NSW.Materials and methodsWhole-population birth records and birth and death registrations were linked for all births during 2000-2013 (WA) and 2002-2008 (NSW). Hospital records and the WA Register of Developmental Anomalies - Cerebral Palsy were linked for all WA births and hospital records for a subset of NSW births. Descriptive statistics are reported for maternal and child demographics, maternal health, pregnancy complications, births and perinatal outcomes.ResultsThirty-four thousand one hundred twenty-seven WA Aboriginal, 32,352 NSW Aboriginal and 601,233 NSW non-Aboriginal births were included. Pregnancy complications were more common among mothers of Aboriginal twins than Aboriginal singletons (e.g. 17% of mothers of WA twins had hypertension/pre-eclampsia/eclampsia vs 8% of mothers of singletons) but similar to mothers of NSW non-Aboriginal twins. Most Aboriginal twins were born in a principal referral, women's or large public hospital. The hospitals were often far from the mother's home (e.g. 31% of mothers of WA Aboriginal twins gave birth at hospitals located more than 3 h by road from their home). Outcomes were worse for Aboriginal liveborn twins than Aboriginal singletons and non-Aboriginal twins (e.g. 58% of NSW Aboriginal twins were preterm compared to 9% of Aboriginal singletons and 49% non-Aboriginal twins).ConclusionsMothers of Aboriginal twins faced significant challenges during the pregnancy, birth and the postnatal period in hospital and, in addition to accessible specialist medical care, these mothers may need extra practical and psychosocial support throughout their journey.

Dataset Information

Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort.

Background

Methods

Results

Conclusions

Publications

Challenges and strategies for cohort retention and data collection in an indigenous population: Australian Aboriginal Birth Cohort.

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