In addition to the privacy protection afforded by the record linkage methodology, restrictions on the nature of data items available to the research team, as well as restrictions on the provision of geographical and calendar data, help ensure that individual participants cannot be identified. AEDC data were linked to: For children who had an NSW birth registration record, linkage identified Having identified that a substantial proportion of the child cohort had not been born in NSW, and would thereby be excluded from future studies using linked parental records, we compared the sociodemographic characteristics of the whole cohort to those without an NSW registered birth, as well as Australian and NSW population estimates for children of the same age; no major group differences were detected see online supplementary table 1-X.
Optimal linkage rates were achieved table 2 , with a false positive rate of 0. Multiagency data collection record linkage rates and retained sample following cleaning. At the time of the AEDC in , the mean age of participants was 5. The top five countries of children's birth included: The socioeconomic distribution of area of residence for the cohort members was similar to the distribution reported for the national AEDC sample.
Scores on the AEDC provide an indication of early childhood development on five domains of functioning, as described above. For each domain, a child received a score between 0 and 10, with higher scores indicating better developmental functioning. AEDC domain and subdomain percentile and vulnerability distributions for the whole child cohort and the subcohort with linked parental records are provided in the online supplementary table 2-X.
Those with linked parental records uniformly showed slightly lower rates of vulnerability on AEDC domain and subdomain scores. Because AEDC domain scores are not provided for children with special needs ie, children who require special assistance in the classroom due to a chronic medical, physical, or intellectually disabling condition , we additionally present demographic data for the cohort with these children removed from the total cohort, and the subcohort with parental linked data see online supplementary table 1-X.
Literacy included seven dimensions and numeracy included four dimensions, listed in table 3. Scores across dimensions were standardised to a range 0—3, in which 0 indicated normal or expected performance on school entry, and 1—3 indicated incremental performance increases above what is expected on school entry.
In our cohort, the majority of children achieved an expected level of proficiency: There were cohort members 4. Mean maternal age at birth, and mean birth weight, were in line with national norms. These accounted for Further details regarding the most prevalent diagnoses under each ICDAM chapter block are provided in the online supplementary table 3-X.
Emergency Department presentations — The most common reasons for emergency department presentation were otitis media unspecified 4. Further details regarding the most prevalent diagnoses under each ICDAM chapter block are provided in the online supplementary table 4-X. The most frequent reasons for admission of mothers, aside from those related to pregnancy, childbirth and the puerperium, were diseases of the digestive and genitourinary systems.
For fathers the most common reasons for admission were diseases of the digestive system, and injuries or poisonings. Further details regarding the most prevalent diagnoses under each ICDAM chapter blocks are provided in the online supplementary table 3-X. Emergency department presentations — In this paper, for descriptive purposes, both ICD versions are reported in the online supplementary table 5-X.
Mental Health Ambulatory — There were mothers 6. The same pattern was evident for fathers: There were mothers 8. Online supplementary table 6-X shows, respectively, the number of children with a maternal and paternal history of the offences listed in the standard ASOC categories.
This was conducted in school class time, with assistance from schools in NSW, and captured approximately This will provide an opportunity to elucidate patterns of risk and resilience across early and middle child development, and will form the foundation upon which subsequent waves of record linkage will be conducted to provide information about health and other outcomes as the cohort moves into adolescence and early adulthood.
The study thus affords a unique opportunity to investigate developmental pathways representing both risk of disorder and resilience to adversity, with respect to rare exposure and long-term outcomes that will be determined over time in future record linkages.
This research is enabled by the investment of Federal and State Governments in Australia in providing the necessary record linkage infrastructure, ethical guidelines and specialist committee review, as well as privacy legislation to safeguard the use of individual data for research in a protected manner. The use of sequential record linkages as the primary means of longitudinal follow-up is expected to minimise loss of participants in future phases, other than due to migration or mortality.
Attrition rates are anticipated to reflect the average annual inward interstate: In terms of limitations, first, the research data obtained through record linkage involves information collected primarily for administrative purposes, potentially limiting the depth and accuracy of the information available. Third, intergenerational analyses in the future will not be possible for Finally, a weakness of the first record linkage described here is the absence of information on the indigenous status of cohort participants.
Permissions for accessing the indigenous indicator are being sought for future linkages. Initial data analyses and publications will be generated primarily by those listed as authors on this paper, and others mentioned in the acknowledgements section as members of the scientific committee overseeing this project, together with their postgraduate research students. However, the research team is open to potential research collaborations with other scientists, with the proviso that analysis of linked data is currently authorised to occur at only one location, owing to ethical considerations in relation to relevant privacy legislation.
In the first instance, potential researchers interested in collaboration should contact the first author VC with their expression of interest. However the information and views contained in this study do not necessarily, or at all, reflect the views or information held by these Departments.
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author s and has not been edited for content.
All authors have given final approval of the version to be published, and agree to its accuracy. Provenance and peer review Not commissioned; externally peer reviewed. Data sharing statement The research team is open to potential research collaborations with other scientists, with the proviso that analysis of linked data is currently authorised to occur at only one location, owing to ethical considerations in relation to relevant privacy legislation.
Mental Health Diagnosis not yet allocated or F This is a code provided in the ICD and Mental Health Ambulatory Data Collection Dictionary when the diagnosis did not fall into the categories already identified, or the clinicians were unsure. You will be able to get a quick price and instant permission to reuse the content in many different ways.
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