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Annie Janvier, MD, PhD (she/her/hers)
Profesor of Pediatrics and Clinical Ethics
University of Montreal
Montréal, Quebec, Canada
Outcomes evaluated during neonatal follow-up are essential for several reasons: 1) to inform parents and assist with decision making; 2) to identify children needing early intervention; 3) for benchmarking and quality improvement purposes; 4) for research purposes (interventions in the NICU designed to improve long-term outcomes). Most follow-up programs focus uniquely on neurodevelopmental outcomes (NDI) and use a classification system of disabilities based on the perspectives of scientists regarding what should be considered ‘normal’ neurodevelopment and when impairments should be classified as mild, moderate, or severe.
The above classification system has never been validated by parents of NICU babies nor by former premature infants when they grow up. It needs to be. Empiric investigations of parent important outcomes demonstrate that parents do not classify children the same way clinicians do: they report their children as being less disabled. They also report positive transformations that are not evaluated. Families also describe major concerns that are not systematically evaluated at follow-up, such as growth, respiratory outcomes, rehospitalizations, future functional abilities, self-reported quality of life, sleep, or ‘mild’ neurological dysfunction, behavioral outcomes or adverse parental outcomes. As a result, data obtained at neonatal follow-up or during large clinical trials do not entirely capture outcomes that parents deem most meaningful; those that may impact the child and family. How can such outcomes be integrated in follow-up programs and databases in a practical and meaningful manner?
This interdisciplinary panel (parent, NICU follow-up pediatricians, neonatologists-researchers, and a clinical ethicists), these complex topics will be addressed.
Speaker: Annie Janvier, MD, PhD – University of Montreal, CHU Sainte-Justine
Speaker: Rebecca L. Pearce, BSc, MSc, BEd – Ste Justine Hospital, McGill University Faculty of Education
Speaker: Annie Janvier, MD, PhD – University of Montreal, CHU Sainte-Justine
Speaker: Saroj Saigal, MD, FRCP – McMaster University
Speaker: Peter G. Davis, MBBS, MD – University of Melbourne