Introduction: Extremely preterm birth is associated with death and a higher risk of adverse long-term outcomes. Neurodevelopmental impairment (NDI) has become the focus of neonatal follow-up and outcome research, with classifications chosen by clinicians and researchers. However, parents were never consulted about this classification.
Methods: Over a one-year period, at Sainte-Justine University Hospital’s Neonatal Follow-Up Clinic, all parents of children born <29 weeks’ gestational age, aged between 18 months corrected age and 7 years were approached. They were asked two questions: “Please rate your child's health from your point of view on a scale from 0 (very poor) to 10 (excellent)” and “If you could improve up to two things about your child's health and/or development, what would they be?” Responses were analyzed using mixed methods.
Results: 249 parental responses were obtained (98% participation rate). On average, parents rated their child’s health to be 8/10 (range 3-10/10, median 8/10). Main themes invoked about areas for improvement were developmental outcomes (65%):“if he could talk and hold his head up himself”; respiratory heath and overall medical fragility (35%):“her lungs are still fragile”; and behaviour/emotional issues (21%): “his anxiety”. Twenty-three percent did not wish to improve anything: “I am very happy with his health and development.” When examining developmental outcomes more closely, the recurrent sub-themes for improvement were language/communication (22%), motor/movement (17%) and cognitive/learning (16%): “improving her attention in school.”
Conclusion: When they come to neonatal follow-up, parents generally perceive the health of their extremely preterm children in a positive way. While some parents have no wishes for improvement in their children, many are concerned by their children’s NDI. On the other hand, several parent-important outcomes, such as lung health and overall medical fragility, are insufficiently investigated during follow-up at the present time.
Thuy Mai Luu– Clinician-scientist and Pediatrician, CHU Sainte-Justine
Annie Janvier– Neonatologist and Clinical Researcher, CHU Sainte-Justine Research Center, Montreal, Canada
Laurie Anne Duquette– Medical Student, CHU Sainte-Justine Research Center, Montreal, Canada
Emilie Thivierge– Medical student, CHU Sainte-Justine, Université de Montréal
Claude-Julie Bourque– Researcher in clinical ethics, CHU Sainte-Justine Research Center, Montreal, Canada
Anne Synnes– 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.
Magdalena Jaworski– Doctor, CHU Sainte-Justine Research Center, Montreal, Canada