In remote Aboriginal communities of the Fitzroy Valley historical trauma, chronic alcohol oversupply, high-risk patterns of alcohol consumption and the devastating effects of alcohol on the developing fetus threaten the continuation of language and culture (personal communication, June Oscar 2011). Alcohol is teratogenic and exposure in utero can cause a spectrum of lifelong physical, neurological and cognitive abnormalities termed fetal alcohol spectrum disorders (FASD), including specific diagnoses of fetal alcohol syndrome (FAS), partial FAS (pFAS) and neurodevelopmental disorder - alcohol exposed (ND/AE) .
In 2007, the Fitzroy Valley communities introduced local alcohol restrictions, with immediate and enduring social and health benefits . Until recently few people in the Fitzroy Valley communities were aware of the effects of alcohol on the developing fetus. Since 2008 a concerted FASD awareness raising campaign has laid the foundation for FASD prevention.
This campaign is part of a sophisticated strategy to address FASD,  including partnering with leading research organisations The George Institute for Global Health and Sydney Medical School, The University of Sydney, to conduct Australia’s first population-based FASD prevalence study: The Lililwan Project [4–6]. This paper describes the development of a reliable questionnaire for use in the Lililwan Project.
Alcohol exposure in utero is the most common preventable cause of intellectual impairment, and international estimates of FAS prevalence range from a median of 0.27 cases per 1,000 people in surveillance studies, to a median of 8.5 cases per 1,000 people using active case ascertainment methods . Studies in some high-risk communities that include all diagnoses on the FASD spectrum (FAS, pFAS, ND-AE) report a median prevalence of 19.0 cases per 1,000 people . Communities where high-risk drinking is common, including some Fitzroy Valley communities, are expected to have high FASD prevalence rates. In Australia the prevalence of FASD is unknown and there are few FASD screening programs or diagnostic clinics [8, 9]. Diagnosis of FASD requires a comprehensive history and a multidisciplinary clinical and developmental assessment . A comprehensive history includes details of prenatal alcohol exposure, other pregnancy complications and exposures, birth, development, health and social/environmental conditions. Multidisciplinary clinical/developmental assessment identifies dysmorphology and growth impairment, central nervous system structure/function and differential diagnoses .
Prenatal alcohol exposure data is key in diagnosis of FASD. A number of tools have been developed for gathering alcohol exposure and comprehensive history data for the purpose of FASD diagnosis. FASD researchers in the Collaborative Initiative on FASD (CIFASD) have developed a standard vocabulary for alcohol exposure variables with the aim of gathering comparable data from multiple sites . The University of Washington (UW) 4-digit diagnostic code  includes a ‘new patient information form’ to document demographics, growth, health, schooling, environmental stressors and alcohol exposure in utero. A series of 14 questions document alcohol exposure prior to and during pregnancy and evidence of maternal alcohol dependency.
Researchers at the University of New Mexico developed an extensive (240 item) questionnaire for use in FASD prevalence studies in rural South African communities . This questionnaire includes demographic, health and antenatal items with a particular focus on family structure and household stressors including employment status, household occupancy and income, and domestic violence. Questions about maternal nutrition lead into a comprehensive series of questions about alcohol use.
While suitable for use in their intended target populations, none of the existing questionnaires are appropriate for use in remote Australian Aboriginal communities. Our questionnaire required a standardised approach to administration, tailored language with meaningful local terminology, and detailed questions on language groupings and environmental conditions including early life trauma. Additionally, specific pictorial aides were used to display local alcohol brands and improve accuracy of alcohol use reporting. This questionnaire enables history taking as part of an assessment battery to accurately establish FASD prevalence in these communities.
The objectives of this study were to:
Develop a comprehensive, culturally acceptable questionnaire feasible for use in the Lililwan project to collect demographic, socio-cultural, antenatal and biomedical data from parents/carers of children born in 2002 or 2003 and living in the Fitzroy Valley in 2010 or 2011.
Evaluate the test-retest reliability of this questionnaire.