Diagnostic Accuracy and economic value of a Tiered Assessment for Fetal Alcohol Spectrum Disorder (DATAforFASD): Protocol.

INTRODUCTION: Australian practices for diagnosing fetal alcohol spectrum disorder (FASD) are lengthy and require specialist expertise. Specialist teams are based in urban locations; they are expensive and have prolonged waitlists. Innovative, flexible solutions are needed to ensure First Nations children living in rural/remote communities have culturally appropriate and equitable access to timely diagnosis and support. This study compares the accuracy of rapid assessments (index tests) that can be administered by a range of primary healthcare practitioners to specialist standardised FASD assessments (reference tests). The cost-efficiency of index tests will be compared with reference tests. METHODS AND ANALYSIS: At least 200 children aged 6-16 years at-risk of FASD will be recruited across at least seven study sites. Following standards for reporting diagnostic accuracy study (STARD) guidelines, all children will complete index and reference tests. Diagnostic accuracy statistics (including receiver operating curves, sensitivity, specificity, positive and negative predictive values and likelihood ratios) will identify whether rapid assessments can accurately identify: (1) the presence of an FASD diagnosis and (2) impairment in each neurodevelopmental domain, compared to comprehensive assessments. Direct and indirect healthcare costs for index tests compared to reference tests will be collected in primary healthcare and specialist settings. ETHICS AND DISSEMINATION OF RESULTS: Children's Health Queensland Hospital and Health Service Human Research Ethics Committee (HREC/20/QCHQ/63173); Griffith University Human Research Ethics Committee (2020/743). Results will assist in validating the use of index tests as part of a tiered neurodevelopmental assessment process that was co-designed with First Nations community and primary healthcare practitioners. Outcomes will be summarised and provided to participating practitioners and sites, and disseminated to community health services and consumers. Findings will be presented at national and international conferences and published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: ACTRN12622000498796.

Exploring parental perceptions of a family-centred model of care in a public child development service.

Family-centred care (FCC) is recognised as a fundamental practice principle in the delivery of contemporary paediatric allied health care; however, limited evidence exists on how to translate FCC theory into practice for Child Development Services (CDS). This study describes and evaluates parent perceptions of a family-centred model of care at a publicly funded CDS where a care pathway consists of parent orientation-to-service session, integrated transdisciplinary allied health assessment, feedback and goal setting appointments. 15 participants completed a semi-structured in-depth interview and rating scales of service satisfaction. Interview data were audio recorded and transcribed verbatim. Thematic analysis and data triangulation were completed by three investigators to enhance validity and descriptive statistics were identified. The model of care was positively perceived by families, with participants identifying value in communication; fostering of respect and partnership and therapist skills. Service themes that influenced parents' perception of the model included benefits of a holistic approach to care and staffing continuity. Uncertainty of wait list time frames and transition/discharge points were identified as a source of stress by families. This research investigates what components of FCC are meaningful to consumers and considers practical ideas of delivering care within a family-centred framework.