Original ArticlesParental Perspectives Regarding Outcomes of Very Preterm Infants: Toward a Balanced Approach
Section snippets
Methods
This cross-sectional survey used data on infants collected prospectively from neonatal intensive care unit (NICU) discharge until 18-22 months corrected age at Centre Hospitalier Universitaire Sainte-Justine, a level III hospital university center. All surviving infants born before 29 weeks of gestational age between 2009 and 2012 were eligible for follow-up. There were no exclusion criteria. The study protocol was accepted by the local institutional review board. All parents were informed and
Results
At the follow-up visit at 18-22 months of corrected age, 270 of the 323 eligible infants who survived until neonatal discharge were assessed (84% follow-up rate). Among the 270 infants seen at 18-22 months of corrected age, 190 had completed both a neurodevelopmental assessment and parental questionnaires, and were considered as study participants (Figure 1; available at www.jpeds.com). Our study participants were representative of all patients eligible for follow-up in terms of maternal and
Discussion
Neurodevelopmental follow-up of preterm infants is crucial for quality assessment of perinatal practice, for research, and to inform both parents and clinicians. We investigated, with open-ended questions, parental perspectives regarding their child at the 18-month follow-up visit, including both positive and negative aspects.
Parents had many positive aspects to report about their children. These mainly related to their children's personalities, their happiness, and how well they were
Data Statement
Data will be made available on request.
References (34)
- et al.
Neonatal networks: clinical research and quality improvement
Semin Fetal Neonatal Med
(2015) - et al.
Early neurodevelopmental outcomes of extremely preterm infants
Semin Perinatol
(2016) - et al.
Measuring and communicating meaningful outcomes in neonatology: a family perspective
Semin Perinatol
(2016) - et al.
Parenting stress in families with very low birth weight preterm infants in early infancy
Res Dev Disabil
(2014) - et al.
Long-term impact of preterm birth: neurodevelopmental and physical health outcomes
Clin Perinatol
(2017) “We're tired, not sad”: benefits and burdens of mothering a child with a disability
Soc Sci Med
(2007)- et al.
Long term follow up of high risk children: who, why and how?
BMC Pediatr
(2014) Neurorehabilitation after neonatal intensive care: evidence and challenges
Arch Dis Child Fetal Neonatal Ed
(2015)- et al.
Comprehensive follow-up care and life-threatening illnesses among high-risk infants: a randomized controlled trial
JAMA
(2000) - et al.
Determinants of developmental outcomes in a very preterm Canadian cohort
Arch Dis Child Fetal Neonatal Ed
(2017)
Trends in care practices, morbidity, and mortality of extremely preterm neonates, 1993-2012
JAMA
Advocating for equality for preterm infants
CMAJ
Association between feeding difficulties and language delay in preterm infants using Bayley Scales of Infant Development-Third Edition
J Pediatr
Parental perspectives of the health status and health-related quality of life of teen-aged children who were extremely low birth weight and term controls
Pediatrics
Attitudes toward neonatal intensive care treatment of preterm infants with a high risk of developing long-term disabilities
Pediatrics
Transformational outcomes associated with parenting children who have disabilities
Ment Retard
Beyond stress: describing the experiences of families during neonatal intensive care
Acta Paediatr
Cited by (0)
Funded by the Fonds de Recherche en Santé du Québec (salary support) to A.J. and T.M.L. The authors declare no conflicts of interest.
Portions of this study were presented as an abstract at the Canadian Pediatric Society, May 31, 2017, Vancouver, Canada, and the American Academy of Cerebral Palsy and Developmental Medicine, September 14, 2017, Montreal, Canada.