The Lililwan Project: study protocol for a population-based active case ascertainment study of the prevalence of fetal alcohol spectrum disorders (FASD) in remote Australian Aboriginal communities

Abstract

IntroductionAnecdotal reports suggest that high-risk drinking in pregnancy is common in some remote Australian communities. Alcohol is teratogenic and may cause a range of lifelong conditions termed ‘fetal alcohol spectrum disorders’ (FASD). Australia has few diagnostic services for FASD, and prevalence of these neurodevelopmental disorders remains unknown. In 2009, Aboriginal leaders in the remote Fitzroy Valley in North Western Australia identified FASD as a community priority and initiated the Lililwani Project in partnership with leading research organisations. This project will establish the prevalence of FASD and other health and developmental problems in school-aged children residing in the Fitzroy Valley, providing data to inform FASD prevention and management.Methods and analysisThis is a population-based active case ascertainment study of all children born in 2002 and 2003 and residing in the Fitzroy Valley. Participants will be identified from the Fitzroy Valley Population Project and Communicare databases. Parents/carers will be interviewed using a standardised diagnostic questionnaire modified for local language and cultural requirements to determine the demographics, antenatal exposures, birth outcomes, education and psychosocial status of each child. A comprehensive interdisciplinary health and neurodevelopmental assessment will be performed using tests and operational definitions adapted for the local context. Internationally recognised diagnostic criteria will be applied to determine FASD prevalence. Relationships between pregnancy exposures and early life trauma, neurodevelopmental, health and education outcomes will be evaluated using regression analysis. Results will be reported according to STROBE guidelines for observational studies.Ethics and disseminationEthics approval has been granted by the University of Sydney Human Research Ethics Committee, the Western Australian Aboriginal Health Information and Ethics Committee, the Western Australian Country Health Service Board Research Ethics Committee and the Kimberley Aboriginal Health Planning Forum Research Sub-committee. Results will be disseminated widely through peer-reviewed manuscripts, reports, conference presentations and the media.

Impairment of motor skills in children with fetal alcohol spectrum disorders in remote Australia: The Lililwan Project

“…Stage 2 involved inter-disciplinary health and development assessments of these children, including of motor performance. The detailed Lililwan study protocol is published elsewhere [32]. Lililwan is a Kimberley Kriol word meaning 'all the little ones'.…”

“…In the current study, we considered upper-limb co-ordination (ball skill) activities to be a gross motor skill, and hence, they were assessed by a physiotherapist but were analysed in accordance with the BOT-2 manual as a fine motor skill [26]. Consideration of culture and language, assessor training and standardised administration of the BOT-2 were performed and have been described [32,35]. Assessments were performed in quiet locations at the child's school, fine motor assessments indoors and gross motor assessments outdoors under shade.…”

“…Fetal alcohol spectrum disorders diagnoses were assigned using a modified version of the Canadian guidelines [3,32].…”

“…We evaluated motor skills as part of a population-based prevalence study of FASD in the Fitzroy Valley, Western Australia (the Lililwan Project) between May 2010 and November 2011 [32].…”

Fetal alcohol spectrum disorders: Prevalence rates in South Africa

“…In a 2015 study in a rural community in Australia, a FAS rate of 120 per 1 000 was reported, [24] this being the first study outside of SA to report figures close to the SA rates. In 2006, the National Institute on Alcohol Abuse and Alcoholism already raised concern for this 'large and rapidly increasing public health problem' .…”