Oral or Poster Presentation
Concurrent Session 3D - Neo Neurosciences & Neuro Critical Care
Paige Church, MD
Neonatologist & Developmental Behavioural Pediatrician; Medical Director, Neonatal Follow Up Clinic
Department of Pediatrics, University of Toronto and Sunnybrook Health Sciences Center Sainte-Justine, Toronto, ON, Canada.
Anne Synnes, MD
Neonatologist and Director of Canadian Neonatal Follow-Up Network
Department of Pediatrics, University of British Columbia and BC Children’s and Women’s Hospital and Health Centre, Vancouver, BC, Canada.
Introduction: Neurodevelopmental impairment (NDI) rates are used to make critical healthcare decisions. Neurodevelopment among very preterm infants (<29 weeks) is often divided into normal, mild/moderate impairment, and severe impairment, yet parents’ perspectives regarding this classification have not been sought. Our objective was to examine agreement between parents’ and the Canadian Neonatal Follow-Up Network’s (CNFUN) classification of very preterm infants’ level of neurodevelopment.
Methods: Across 9 CNFUN sites at the 18-month visit, we recruited 237 parents and asked them to categorize their very preterm child as developing normally, having mild/moderate impairment, or severe impairment. Responses were linked to the child’s neurodevelopmental assessment. CNFUN categorizes NDI based on hearing, vision, cerebral palsy and its severity, and developmental status (Bayley Scales of Infant and Toddler Development [Bayley-III]). Agreement was computed using Cohen’s kappa. We further examined discrepancies in categorization by the NDI components and parent demographics.
Results: Children of respondents had a mean gestational age of 26.1±1.5 weeks, birthweight of 904±242 grams, and were evaluated at 19.2±2.7 months corrected age. Table 1 shows parental versus CNFUN NDI classification. Agreement was fair (κ=0.22; p<0.01). Of the 109 children with mild/moderate to severe NDI according to CNFUN, 52 (48%) were considered to have no NDI as per parental classification. Significant disagreement between CNFUN and parental categorization was found for hearing status and Bayley-III cognitive, language and motor status (all p<0.01) but not cerebral palsy. Parent demographics were not associated with discrepancies between categorizations.
Conclusion: Parents’ perception of their very preterm child’s NDI differs from traditional medical classifications. Understanding NDI as perceived through the parental lens will help redefine meaningful outcomes to inform clinical practice and healthcare for very preterm infants and their families.