Specific behaviour problems in children with FASD in remote Australian Aboriginal communities Results from the Lililwan Project
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1 Specific behaviour problems in children with FASD in remote Australian Aboriginal communities Results from the Lililwan Project Elizabeth Elliott Dr. Tracey W Tsang and the Lililwan Project Team Paediatrics & Child Health University of Sydney Medical School
2 Study authors: Tracey Tsang, Heather Carmichael-Olson, Marmingee Hand Lililwan Chief Investigators: Elizabeth Elliott, June Oscar, Maureen Carter, James Fitzpatrick, Jane Latimer. Funders: NHMRC; Australian Government Dept. Families, Housing, Community Services & Indigenous Affairs; Dept. Health & Ageing; University Sydney 2
3 Tsang, Carmichael-Olsen, Elliott et al. Pediatrics, 2016 Meta-analysis No FASD vs FASD (n=16) T-scores: Total, Internalizing, Externalizing problems Total Internalizing 6.32 Externalizing 12.46
4 Behaviour in FASD Background & Purpose FASD associated with problematic behaviours - Behaviour challenges in Aboriginal children with FASD? - Aboriginality and remote living associated with: - Early life trauma; disadvantage Secondary outcomes of FASD: - Poor academic achievement; Unemployment; trouble with the law; poor QOL and health What do we need to know?: - Behaviour challenges at home and in school - Differences between FASD vs. No FASD 4
5 The Lililwan Project. Fitzroy Valley, WA, Elliott E, Latimer J, Oscar J, Fitzpatrick J, Carter M First population-based study of FASD prevalence Fitzroy Valley 4,500 mainly Aboriginal 45 discrete communities 5 language groups Community consultation Lililwan is a Kimberley Kriol word meaning all the little ones 5
6 Background Lililwan Project Community-initiated, population-based study Objectives: 1. FASD prevalence (2002-3) 2. Relationships between prenatal alcohol exposure & neurodevelopmental and behavioural outcomes 3. Assessment, diagnosis, health, education management plans 6
7 7 The Lililwan Project Stage 1 Identify all children born 2002 or 2003 living in Fitzroy Valley; Interview parents/carers April-Aug of 134 eligible (95% participation rate) Stage 2 Interdisciplinary assessment; Achenbach: CBCL, TRF; Development of individual management plans Nov 2010 Trial of clinical assessments (N=6) May-Nov 2011 Interdisciplinary assessment of cohort
8 Interdisciplinary assessment Heather Carmichael-Olsen Robyn Doney Barb Lucas James Fitzpatrick Clare Salter
9 The Lililwan Project; Fitzpatrick et al. Elliott. PRENATAL ALCOHOL EXPOSURE 19% FASD 100% ELT n = % drank 93% high risk Most T1-T3
10 Achenbach: CBCL simplified structure Individual Qs ( items ) Scale scores Scale score A Scale score B Broad summary scores Broad summary score 1 (113 items: 12 Critical) Scale score C Scale score D (24 CBCL scales) Broad summary score 2 (4 CBCL scores) 10
11 Cohort & Methods Behaviour data N = 108: CBCL: N=97; TRF: N=106 Age: 8.7 ± 0.6 y (range: 7.4 to 9.6 y) FASD 21 (19%) Child Protection: FASD 40%; Non-FASD 14.5% (p<0.05) CBCL trained community navigators TRF self-administered Analyses: FASD v Non-FASD - Proportions with Normal, & Borderline / Clinical scores - Total scores - Critical items 11
12 Results: Total Cohort Borderline / Clinical behaviours (%) CBCL (parent-rated) % 38.2% 34% 29.9% Dark blue composite Light blue sub-scales 20 24% 23.7% 21.6% Conduct problems Total competence Externalizing problems Internalizing problems Activities competence Total problems Withdrawn/ Depressed 12
13 Results: Total Cohort Borderline / Clinical range behaviours (%) TRF (teacher-rated) % Dark green composite Light green - subscales % % 29.3% 22.6% 21.7% 20.8% 10 0 Academic performance Adaptive function Externalizing problems Total problems Internalizing problems Aggressive behavior Rule-breaking behavior 13
14 Results: Total Cohort Composite Scores: Borderline / Clinical (%); Parent & Teacher) % % 34% 30% % 23% CBCL TRF Total problems Externalizing problems Internalizing problems 14
15 Parent ratings CBCL Results: FASD vs Non-FASD Prior to correction, FASD > no-fasd: - Borderline / Clinical range: Attention problems - Total scores: Social problems, Attention problems DSM-oriented scale: ADHD After statistical adjustment for multiple comparisons: - No significant differences between FASD v Non-FASD: Borderline / Clinical scores Total scores Critical items 15
16 TRF Results: FASD vs Non-FASD Teacher ratings: Borderline / Clinical range scores Behaviour scale FASD (%) (n=21) Non-FASD (%) (n=85) Academic performance Affective problems Attention problems subscale: Inattention 33 7 Attention problems 33 5 Attention deficit hyperactivity (ADH) problems 33 5 Sluggish cognitive tempo 29 5 ADH subscale: Inattentive 24 6 ADH subscale: Hyperactivityimpulsivity Significant differences after adjustment for multiple comparisons
17 FASD vs Non-FASD TRF T-score (SD); Raw (IQR) Behaviour scale FASD Non-FASD ADH problems subscale: Inattention 4 (3 9) 2 (0 4) Attention problems 60.9 (8.8) 54.1 (5.6) Attention problems subscale: Inattention 9 (6 20) 3 (1 9) Attention problems subscale: Hyperactivityimpulsivity 8 (3 13) 4 (0 7) ADH problems 61.3 (9.7) 54.7 (5.9) ADH problems subscale: Hyperactivityimpulsivity 7 (2 10) 3 (0 5) Thought problems 56.8 (5.6) 52.2 (3.9) Academic performance 35.2 (0.4) 41.6 (9.4) Social problems 60.4 (8.7) 53.8 (5.5) Post-traumatic stress 59.2 (8.9) 53.9 (5.4) Sluggish cognitive tempo 59.5 (9.0) 53.9 (5.4) Withdrawn / depressed 59.4 (8.1) 54.4 (6.3) 17
18 Results: FASD vs Non-FASD Teacher ratings: Critical Items [N (%)] Critical item Total cohort (n=106) FASD (n=21) Non-FASD (n=85) 0 critical items 1 critical item 2 critical items 80 (75%) 22 (21%) 4 (4%) 12 (57%) 6 (29%) 3 (14%) 68 (80%) 16 (19%) 1 (1%) Harms self 1 (0.9%) 0 1 (1.2%) Hears things Attacks 23 (21.7%) 8 (38.1%) 15 (17.6%) Sees things 1 (0.9%) 1 (4.8%) 0 Talks suicide 4 (3.8%) 3 (14.3%)* 1 (1.2%) Illicit alcohol/drugs 1 (1.0%) 0 1 (1.2%) * Significant difference 18
19 Summary First investigation of behaviour in FASD in remote Aboriginals First study to examine all scales & Critical items, CBCL & TRF Prevalent problems (Total cohort): - Academic performance, Attacking others; Internalizing problems, Externalizing problems, Total problems; Aggressive behaviour; Conduct problems. Children with FASD show: - Poorer academic performance; more attention problems, sluggish cognitive tempo, adaptive function problems, affective problems, social problems, talking of suicide. Parent vs teacher ratings: - Consistent for total cohort for composite problem scores (Total, Internalizing, Externalizing problems) - Inconsistent in comparisons of FASD v Non-FASD 19
20 For all the Family Positive Parenting Program Triple P International 20 accredited Parent Coaches, 14 Aboriginal, 10 organisations
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