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Paediatrics
Protocol
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
  1. James P Fitzpatrick1,2,
  2. Elizabeth J Elliott1,2,3,4,
  3. Jane Latimer1,2,
  4. Maureen Carter5,
  5. June Oscar6,7,
  6. Manuela Ferreira1,2,
  7. Heather Carmichael Olson8,
  8. Barbara Lucas9,
  9. Robyn Doney10,
  10. Claire Salter,
  11. Elizabeth Peadon2,3,
  12. Genevieve Hawkes11,
  13. Marmingee Hand7
  1. 1The George Institute for Global Health, Sydney, Australia
  2. 2Sydney Medical School, University of Sydney, Sydney, Australia
  3. 3The Sydney Children's Hospital Network (Westmead), Westmead, Australia
  4. 4Discipline of Paediatrics and Child Health, University of Sydney, Sydney, Australia
  5. 5Nindilingarri Cultural Health Services, Fitzroy Crossing, Australia
  6. 6Marninwarntikura Women's Resource Centre, Fitzroy Crossing, Australia
  7. 7University of Notre Dame, Broome, Australia
  8. 8Seattle Children's Research Institute, Seattle, Washington, USA
  9. 9Physiotherapy Department, Royal North Shore Hospital, Sydney, Australia
  10. 10School of Public Health, Curtin University of Technology, Perth, Australia
  11. 11Western Australian Country Health Services, Broome, Australia
  1. Correspondence to Dr James P Fitzpatrick; jfitzpatrick{at}georgeinstitute.org.au

Abstract

Introduction Anecdotal 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 analysis This 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 dissemination Ethics 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.

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

https://doi.org/10.1136/bmjopen-2012-000968

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    Footnotes

    • To cite: Fitzpatrick JP, Elliott EJ, Latimer J, et al. 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. BMJ Open 2012;2:e000968. doi:10.1136/bmjopen-2012-000968

    • Contributors JPF, EJE, JL, MC and JO consulted with the participant communities, conceived of and designed the study. MF designed reliability protocols and databases for the diagnostic questionnaire. JPF, EJE, JL, HCO, BL, RD and CS designed the clinical assessment protocols. EP developed the first version of the diagnostic questionnaire. GH and MH designed processes and logistics for recruitment of participants and clinical assessment. JPF wrote the first draft of the manuscript. All authors read, edited and approved the final manuscript. MC, JO and MH are Aboriginal leaders from the Fitzroy Valley communities. MC, JO, EJE, JL and JPF are Chief Investigators on the project. JO and MH are Master's candidates with the University of Notre Dame, Broome, Western Australia. JPF and BL are PhD candidates with the University of Sydney, NSW. RD is a PhD candidate with Curtin University of Technology, Perth, Western Australia.

    • Funding Stage 1 is funded by an Australian philanthropist through the Yajilarra Trust. Stage 2 is funded by the Australian Government Departments of Health and Ageing (DoHA) and Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). A National Health and Medical Research Council grant (1024474) will fund data analysis and evaluation of health service usage and service gaps in the Fitzroy Valley. Funding has also been received from Save the Children Australia and the Foundation for Alcohol Research and Education. Pro bono support has been provided by M&C Saatchi, Blake Dawson solicitors and the Australian Human Rights Commission. Elizabeth Elliott is supported by an NHMRC Practitioner Fellowship (457084) and Jane Latimer is supported by an ARC Future Fellowship (FT0991861).

    • Competing interests None.

    • Ethics approval Ethics approval has been granted for all stages of this study (stage 1 administration of diagnostic questionnaires, a trial of stage 2 clinical assessments and stage 2 clinical assessments) by the University of Sydney Human Research Ethics Committee (approval numbers 12527, 13187, 13551), the Western Australian Aboriginal Health Information and Ethics Committee (approval numbers 271-01/10, 319-10/10, 344-04/11), the Western Australian Country Health Service Board Research Ethics Committee (approval numbers 2010:01, 2010:28, 2011:04) and the Kimberley Aboriginal Health Planning Forum Research Sub-committee (approval numbers 2010-001, 2010-001, 2010-001).

    • Provenance and peer review Not commissioned; internally peer reviewed.

    • ↵i Lililwan is a Kimberley Kriol word meaning ‘all of the little ones’ (Kimberley Kriol is a local language spoken by many Aboriginal people in the Fitzroy Valley).