Suchergebnisse

IntroductionCongenital heart defects (CHD) are diagnosed up to age 6 in 8-12/1,000 births annually in Western Australia. Recent improvements in management of infants with CHDs has significantly increased survival; approximately 85\% of infants with CHDs live beyond childhood. However, children with CHDs may have increased risk of life-long intellectual disabilities.
Objectives and ApproachWe conducted a study of 20,997 children to determine risk of intellectual disability (ID). All singleton, live born infants with CHDs born 1983-2010 were identified from the Western Australian Register for Developmental Anomalies, a statewide birth defects registry (n=6,968). Infants without CHDs born 1983-2010 were randomly selected from birth records (n=14,029). All data were linked to the Western Australia Midwives Notification System to obtain maternal and infant information. Children with ID were identified by linkage to the statewide Intellectual Disability Exploring Answers database. Risk ratios (RR) and 95% confidence intervals (CI) were calculated from multivariable logistic regression analyses.
ResultsOf 20,997 children, 965 (4.6%) had an ID; 1.3% of children without CHDs and 11.2% of children with CHDs had an ID (P<0.001). 0.2% of children without CHDs and 0.4% of children with CHDs had autism. Three percent of children with CHDs had a known biomedical cause for ID (excluding trisomy 21) and 4.4% of children with CHDs had trisomy 21. Children with CHDs had 9 times the risk of ID compared to children without CHDs (RR=9.30; 95% CI: 7.91, 10.94). Children with CHDs almost had a twofold increased risk of autism compared to children without CHDs (RR=1.78; 95% CI: 1.07, 2.95). The greatest risk of ID among children with CHDs was associated with trisomy 21 (RR=166.0; 95% CI: 78.5, 350.8).
Conclusion/ImplicationsChildren with CHDs have higher risk of ID than children without CHDs. Although the greatest risk for ID was for trisomy 21, children with CHDs still had increased risk of ID from other causes and all causes overall. Future research should elucidate the underlying etiology of ID in these children.

IntroductionThe IDEA system is a population-based data linkage system for intellectual disability (ID), which combines data from two government departments. Due to recent policy changes the future of the IDEA system is unknown. Understanding the IDEA system's strengths and limitations will provide data custodians with the opportunity to re-design the system.
Objectives and ApproachAn evaluation of the IDEA surveillance system was undertaken to assess the quality, efficiency and usefulness of the system. The primary objectives were to evaluate systematically and objectively the attributes of the system and provide recommendations to data custodians and stakeholders to strengthen the surveillance system.
The evaluation was based on the methods from the 2001 U.S. Centers for Disease Control and Prevention guidelines on evaluation of public health surveillance systems. We assessed the following system attributes: usefulness, simplicity, flexibility, data quality, acceptability, representativeness, timeliness, and stability. This was completed by process observation, semi-structured interviews and data analysis.
ResultsOur results found the IDEA system was flexible, acceptable, representative, timely and stable. Given data linkage process and maintaining confidentiality the data linkage process was considered relatively simple. We compared individuals in the IDEA surveillance system to a sub-group of individuals, cerebral palsy with ID, to the mandatory reporting surveillance system WARDA-CP. There were 582 individuals identified in the WARDA-CP surveillance system as having cerebral palsy and ID. Of those identified 501 (86.1%) were also in the IDEA database and 81 (13.9%) were not. There were little differences in WARDA-CP cases that were not identified in the IDEA system between Indigenous status, sex and place of residence.
Conclusion/ImplicationsThe IDEA system has successfully been used to understand prevalence rates and inform resource allocation. Advocacy organisations could play an important role in the sustainability of the system. Additional variables or enhanced surveillance for functional capacity could strengthen the system and provide important information to inform policy and practice.

OBJECTIVES: Our overall aim was to evaluate the Western Australian Intellectual Disability Exploring Answers (IDEA) surveillance system. The primary objective was to evaluate the attributes of the system. The secondary objective was to provide recommendations to data custodians and stakeholders to strengthen the system. METHOD: The IDEA system was evaluated using process observation, interviews and secondary data analysis of system attributes: usefulness, simplicity, data quality, acceptability, representativeness, timeliness and stability. 2001 US Centers for Disease Control and Prevention guidelines were used. RESULTS: We found that the IDEA system was useful, simple, flexible, acceptable, representative, timely and stable. We compared individuals from the IDEA system (n=10 593) with those with cerebral palsy and intellectual disability (ID) (n=582) from another surveillance system. Of the 582 with cerebral palsy and ID, 501 (86.1%) were in the IDEA system and 81 (13.9%) were not. In total, 0.7% of cases (81/10674) with ID were not identified in the IDEA system. There were little differences in cases that were not identified in the IDEA system between Indigenous status, sex and place of residence. CONCLUSIONS: The strengths of the IDEA system include having a high data quality resource contributing to national and international data on ID, strong government support and a dedicated management team. Output from studies linking to IDEA data have had major contributions to the international literature about ID. However, limited resources have prevented it from realising its full potential in relation to translational activities. The IDEA system is a valuable resource to address the needs of people living with ID.

ABSTRACT
ObjectivesTo examine the risk of abuse and neglect for children with different types of disabilities taking into account other existing adversities, including socioeconomic disadvantage, parental mental health issues, etc.
ApproachPopulation based record linkage study of all children born between 1990-2010 utilising the Western Australian Register of Developmental Anomalies, the Intellectual Disabilities Exploring Answers database, Health data and Child Protection data.
ResultsAfter taking into account existing adversities intellectual disability was associated with the highest risk of a child maltreatment allegation and entering out-of-home care. Further results include risk by level of intellectual disability and causes of disability.
ConclusionDifferent disabilities are associated with differing risk of child maltreatment and child protection involvement. Groups that are considered at higher risk require services to identify and address the support needs of this group and determine how prevention and early intervention can lower the risk for child abuse and neglect in this vulnerable group.

BackgroundWhile Aboriginal Australians are known to be disproportionately affected by intellectual disabilities (ID) and/or autism spectrum disorders (developmental disabilities), true prevalences among Aboriginal children are unclear, with evidence of delayed and missed diagnoses and barriers to services. This study estimated these prevalences and disability service use among WA Aboriginal children.
ApproachTwo cohorts and data sources were used. Firstly, a state-based health and disability data linkage for all WA Aboriginal children born 2000-2013, including hospital, public outpatient mental health, birth and death data and state registries of birth defects, cerebral palsy and ID. The cumulative incidence of diagnosis by age 18 was estimated. Secondly, prevalence of service access was estimated from all National Disability Insurance Scheme (NDIS) WA Aboriginal and non-Aboriginal participants aged 0-17 on 30/6/2021 with a primary diagnosis of ID (with or without fetal alcohol spectrum disorder (FASD)) or autism. Census population counts were denominators.
ResultsUsing the data linkage, 3.3% of Aboriginal children born 2000-2013 were diagnosed with developmental disability by 18 years. The most common diagnosis (2.5%) was ID without FASD. Using NDIS data, 3.1% of Aboriginal children were NDIS participants with development disability in 2021, but only 0.7% of children with ID without FASD. Instead, autism was most common diagnosis. Aboriginal children were more likely than non-Aboriginal children to be NDIS participants with autism (prevalence ratio (PR): 1.16, 95% confidence interval (CI): 1.06-1.26), ID without FASD (PR: 2.06, 95% CI: 1.80-2.35) and ID with FASD (PR: 40.5, 95%CI: 29.9-57.1). For both data sources, prevalences differed by region. Aboriginal NDIS participants with ID had an older age distribution than non-Aboriginal participants.
ConclusionFor both cohorts, the prevalence of developmental disability was >3%, though the contributions of ID and autism differed in the two data sources. Variation in diagnoses by region and Aboriginal status may indicate differential diagnosis and variation in age suggests delayed diagnoses or access to services for Aboriginal children.