Pilot testing of a collaborative Shared Care Model for Detecting Neurodevelopmental Impairments after Critical Illness in Young Children

Collaborative shared care, supported by early, regular e-PROMs with routine outcome monitoring. The following specific components of the intervention are designed to support the collaborative model: a) Parent Information Booklet on PICS-p: Information regarding what is PICS-p, how common it is, what to be aware of, signs to look out for, and what parents can do to support their child. This booklet will be given to the parents immediately after providing consent to participate in the study (at baseline). Booklet created by the research team and PICOLO network. b) Collaborative shared care: We define the term ‘collaborative shared care’ as the partnering of care between the PICU team and primary care provider (primarily a general practitioner based in the community). Both the PICU team and the primary care provider maintain ongoing involvement and support in patient care, share information, agree on common processes proactively, and involve the patient throughout. Specifically, the PICU team will phone the parent at 1-, 3-, and 6-months post PICU to provide 1:1 support and anticipatory education around the care of a child post-PICU. The phone calls will take between 30-45minutes. In addition, the PICU team will send an email link to the parents to complete a neurodevelopmental screening assessment of their child and an emotional wellbeing assessment of themselves (e-PROMs). GPs will be provided with a copy of the Act Now for kids 2morrow book, developed by the Queensland Child and Youth Clinical Network, which supports understanding of child development and the multidisciplinary approach to assessment, diagnosis, intervention and support. c) e-PROMs: Parents/guardians will receive invitations for regular online screening at 1-, 3- and 6-months post PICU. The online screening module consists of a battery of well validated parent completed PICS-p outcome measures and takes approximately 45 minutes to complete. For ease, parents can complete the questionnaire on various devices, including smart phones, and over multiple sessions. d) Reporting of results: The study team will develop Python scripts to automate the processes of exporting the data from REDCap into Stata processing the data and generating the feedback report. The feedback report (co-designed with parents and GPs in a co-design phase pre-implementation) will be provided to GP and parents at each timepoint. Following each screening-PROM assessment, a reminder text message or phone call will be sent by the PICU follow-up team to the parent to attend a follow-up appointment at the GP practice. The feedback is intended to flag whether a patient needs further follow up, and to act as a stimulus to discuss ongoing management, with potential referral to allied healthcare services, such as psychology, occupational therapy, physiotherapy or speech therapy. GP expertise and autonomy will not be questioned, not will judgements be made about the likelihood of non-beneficial treatment.