About the Education and Health Economics Sub-Study: The aim of this sub-study is to understand the impact of treatment-related toxicities on children's developmental and educational outcomes, as well as the economic costs associated with the experience of treatment-related toxicities for children being treated for ALL.
What does participation involve? As part of the Education and Health Economics sub-study, you will be asked to complete a Medicare consent form authorising the study access to your child’s complete Medicare and Pharmaceutical Benefits Scheme (PBS) data. Once your child has turned 14 years of age they will be asked to re-consent by signing the participant consent form themselves. Medicare collects information on your child’s medical visits and procedures, and the associated costs, while the PBS collects information on the prescription medications you have filled at pharmacies. The Medicare and PBS consent form is sent securely to the Department of Human Services who holds this information confidentially. This information will be used to help understand how much it costs to manage toxicities.
Health information will also be collected from your child’s medical records from the hospital and other health organisations e.g. emergency department attendances, hospital admission details, pathology and details of ambulance calls and services, from so-called ‘Datasets’. Information on your child’s development and education will be gathered from your their AEDC (Australian Early Development Census) and NAPLAN (National Assessment Program Literacy and Numeracy) Scores. Governmental ‘Data Linkage’ Agencies will link your child’s identifying information e.g. name, gender, date of birth, postcode from the ASSET Registry to gather your child’s data from these Datasets. The Agencies will provide the research team with data from all consenting participants in a form that does not include any identifying personal information, using a unique personal identification number. All this information will be used to help understand how much it costs to manage toxicities and the impact on your child’s learning and development. For more information on the data linkage process, you can visit the Australian Institute of Health and Welfare (AIHW) and ChereL data linkage websites: http://www.aihw.gov.au and www.cherel.org.au.
