ArticleArchives of disease in childhood. Fetal and neonatal edition2022
Parental perspective on important health outcomes of extremely preterm infants.
Article in Archives of disease in childhood. Fetal and neonatal edition, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 18 papers, 2 of them syntheses that pooled it.
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The trial behind it
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Who cites it
18 citing papers in PubMed, 2 syntheses or guidelines pooled it, 47 citations in OpenAlex.
- Non-invasive respiratory support in preterm infants as primary mode: a network meta-analysis.The Cochrane database of systematic reviews · 2025Pooled it
- Donor human milk for preventing necrotising enterocolitis in very preterm or very low-birthweight infants.The Cochrane database of systematic reviews · 2024Pooled it
- The MIND Randomized Controlled Trial: An Intervention to Improve Neural Speech Processing and 2-Year Language Outcomes of Infants Born Preterm.The Journal of pediatrics · 2026Trial
- Article
- Parent-to-parent recommendations for coping with congenital heart disease: a mixed-methods study.Archives of disease in childhood · 2026Article
- Long-term impact of necrotizing enterocolitis on somatosensory function in preterm born children.Pediatric research · 2026Article
- Early development and school readiness in very preterm children.Frontiers in pediatrics · 2026Article
- Perception of neonatal outcomes: lessons learned from positive health.Seminars in perinatology · 2025Review
- Intensity of perinatal care for extreme preterm births and neurodevelopmental outcomes at age 5½: the EPIPAGE-2 cohort study.BMJ paediatrics open · 2025Article
- Integrating parent voices into research at the extremes of prematurity: what are we doing and where should we go?Journal of perinatology : official journal of the California Perinatal Association · 2025Review
- Balancing survival and suffering: factors influencing parental decision making after periviable consultation.Journal of perinatology : official journal of the California Perinatal Association · 2025Article
- Neonatal Sucrose and Internalizing Behaviors at 18 Months in Children Born Very Preterm.JAMA network open · 2025Article
- A structured comparison and reflection on international position statements and professional guidance for the management of periviable infants.Frontiers in pediatrics · 2025Review
- Defining Outcomes that Matter Most to Parents: Challenging and Important Work.The Journal of pediatrics · 2023Article
- Seminars in Fetal & neonatal medicine: Palliative and end of life care in the NICU.Seminars in fetal & neonatal medicine · 2023Review
- Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders.Children (Basel, Switzerland) · 2023Article
- Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future.Seminars in perinatology · 2022Article
- Synthesizing Interest-holder Perspectives and Evidence-based Potentially Better Practices to Improve High-risk Infant Follow-through Care Quality.Pediatric quality & safetyArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.