54 Preterm Parents Identified Meaningful Outcomes: Involving Parents in Implementing Change

Abstract Background The Canadian Neonatal Follow-Up Network (CNFUN) reports on neurodevelopmental impairments (NDI) in the very preterm population but has never asked parents which outcomes and definitions are meaningful to them. The Parent Voices group conducted four studies which showed differences between parents and CNFUN perspectives on definitions, severity, composite outcomes, which outcomes, and the need to report positive as well as adverse outcomes. Disseminating and implementing change based on these results is the next essential step. Objectives To create consensus statements to guide evidence-based change. Design/Methods Using a modified Delphi method, Parent Voices results were reviewed and discussed with parents, clinicians and researchers in a virtual workshop in Oct 2021. The discussion was analyzed qualitatively to create statements, circulated for feedback, and 80% consensus statements identified by electronic polling. Priority items requiring further work were identified, working groups created, and results presented at a Sept 2022 workshop. Results In the 2021 workshop, 17 consensus statements were identified (7 from the Parent Voices results, 5 from the discussion, and 5 were out of scope). Actionable statements (n=11, Table 1) and items needing further work (n=6, Table 2) were identified and progress was made (Tables 1 and 2). To identify how to measure 7 outcomes which parents and stakeholders identified as important (child well-being, quality of life, socioemotional and behavioural, respiratory, feeding, sleeping, and caregiver well-being), working groups reviewed literature and made recommendations for minimal dataset and funded research at a virtual presentation with parent, clinicians, and researchers in Sept 2022. In the summer of 2022, the Canadian Premature Babies Foundation (CPBF), Parent-EPIQ team members and summer students disseminated the Parent Voices results to lay stakeholder groups via CPBF blogs and webinars. They also pursued a project identified in the 2021 workshop to educate parents about the role of Neonatal Follow-Up Programs using infographics and information sheets. Conclusion We have successfully collaborated with parent partners to implement the actionable results from our Parent Voices Project, and have a process to implement change when further work is required. Involving parents in research, knowledge dissemination and implementation can lead to changes that accurately represent the priorities of families.