Long-term follow-up
We will perform yearly questionnaire-based assessments until your child is five years old when we will perform a full face to face gold standard neuropsychological assessment (school entry/readiness assessment for school entry).
Yearly screening
Each year around the child’s birthday, until their 5th birthday, parents/carers will be asked to complete an online neurodevelopmental survey (to completed on any smart device, laptop or computer). This survey will consist of questions that assess aspects such as motor skills, problem solving, communication, social and emotional behaviour and quality of life. In addition, questions around the parent/carer’s health and wellbeing. After the completion of each annual online survey, we will provide the family and their nominated GP with a report of the survey results.
Face-to-face assessment
Families will be invited to participate in a face-to-face neurodevelopmental assessment around the child’s 5th birthday at the treating children’s hospital (or, if necessary, within their home if travel to their treating hospital is not possible).
This assessment will consist of a 2-3 hour assessment with the treating hospital’s neuropsychology team. This assessment will provide a more comprehensive understanding of the child’s cognition, thinking, motor activity and behaviour, and is particularly important information as children start to navigate schooling. After this assessment, a report will be provided detailing the child’s development, which may be shared with healthcare and education providers.