Parental perspective on important health outcomes of extremely preterm infants

Abstract

Background and objectiveNeonatal outcome research and clinical follow-up principally focus on neurodevelopmental impairment (NDI) after extremely preterm birth, as defined by the scientific community, without parental input. This survey aimed to investigate parental perspectives about the health and development of their preterm children.MethodsParents of children aged 18 months to 7 years born <29 weeks’ gestational age presenting at a neonatal follow-up clinic over a 1-year period were asked to evaluate their children’s health and development. They were also asked the following question: ‘if you could improve two things about your child, what would they be?’ Responses were analysed using mixed methods. Logistic regressions were done to compare parental responses.Results248 parents of 213 children (mean gestational age 26.6±1.6 weeks, 20% with severe NDI) were recruited. Parents evaluated their children’s health at a median of 9/10. Parental priorities for health improvements were (1) development, mainly behaviour, emotional health and language/communication (55%); (2) respiratory heath and overall medical fragility (25%); and (3) feeding/growth issues (14%). Nineteen per cent explicitly mentioned ‘no improvements’. Parents were more likely to state ‘no improvements’ if child had no versus severe NDI OR 4.33 (95% CI 1.47 to 12.75)) or if parents had no versus at least a high school diploma (OR 4.01 (95% 1.99 to 8.10)).ConclusionsParents evaluate the health of their preterm children as being very good, with positive perspectives. Parental concerns outside the developmental sphere should also be addressed both in clinical follow-up and research.

Parental perspectives of outcomes following very preterm birth: Seeing the good, not just the bad

“…It is possible that with time and as the child ages, parents' perspective regarding important outcomes changes. 19 Second, our results were obtained in a single industrialised country with universal healthcare access. Parental priorities may differ in other settings.…”

Respiratory outcomes in preterm babies: Is bronchopulmonary dysplasia important?

“…The two most frequent long‐term complications of neonatal intensive care are brain injury and lung injury. Among parents seen in neonatal follow‐up, respiratory symptoms were the second most common category of concerns, 1 after neurodevelopmental issues. Indeed, respiratory symptoms are associated with, and contribute to, neurodevelopmental challenges.…”

“…Instead of focusing on an outdated definition of BPD, we should develop a measure of 'chronic respiratory morbidity' that more closely reflects burdensome clinical outcomes.Measures of pulmonary outcomes must consider parental concerns and should do so by including parents on research teams, which should develop respiratory outcomes that are meaningful to families. Standardised neonatal follow-up assessments should address the needs of patients and their families, which include evaluation of respiratory outcomes 1. Respiratory outcome measures, which are objective and reflect the real-life impact of lung injury on preterm infants and its relationship with child neurodevelopment, are essential for the future of neonatal care.…”

Views of parents, adults born preterm and professionals on linkage of real-world data of preterm babies

“…Patient and family perspectives on outcomes following preterm birth are increasingly used to inform research priorities. Mixed-methods approaches have previously been used in a study on parental perspectives on health outcomes in preterm birth, to provide both breadth and depth of data 13. Patient and parent group involvement in study design beyond outcome selection is crucial in ensuing acceptability, and maximising participation.…”