ArticleJournal of perinatology : official journal of the California Perinatal Association2020
"Quality of life": parent and neonatologist perspectives.
Article in Journal of perinatology : official journal of the California Perinatal Association, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
21 citing papers in PubMed, 45 citations in OpenAlex.
- Periviable antenatal care, labor and delivery, and initial resuscitation: Some chores to get done before you start.Pediatric research · 2026Review
- Early ultrasound-based assessment of preterm white matter injury: association with MRI and neurological outcomes.Pediatric radiology · 2026Article
- Managing the Uncertainty of "Precision" While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates.Children (Basel, Switzerland) · 2025Article
- Decision Making in Pediatric Heart Failure and Transplant: A Qualitative Analysis of Parental Decision Making.Pediatric transplantation · 2025Article
- Enhancing shared decision-making for infants in the intensive care unit: lessons from parents.Pediatric research · 2025Article
- Parental Perspectives on Development in Children Born Extremely Preterm.The Journal of pediatrics · 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
- Parent-Reported Health-Related Quality of Life (HRQoL) of NICU Graduates in Their First Year: A Prospective Cohort Study.International journal of environmental research and public health · 2025Article
- Trajectory of parental health-related quality of life after neonatal hospitalization - a prospective cohort study.Health and quality of life outcomes · 2025Article
- Multidimensional and Longitudinal Impact of a Genetic Diagnosis for Critically Ill Infants.Pediatrics · 2024Article
- Development and Optimization of Nasal Composition of a Neuroprotective Agent for Use in Neonatology after Prenatal Hypoxia.Pharmaceuticals (Basel, Switzerland) · 2024Article
- Multidimensional and Longitudinal Impact of a Genetic Diagnosis for Critically Ill Infants.medRxiv : the preprint server for health sciences · 2024Article
- Opportunities and Challenges of Prognostic Models for Extremely Preterm Infants.Children (Basel, Switzerland) · 2023Article
- Tracheostomy in Severe Bronchopulmonary Dysplasia-How to Decide in the Absence of Evidence.Biomedicines · 2023Review
- Ranking Future Outcomes Most Important to Parents of Children with Bronchopulmonary Dysplasia.The Journal of pediatrics · 2023Review
- Narrative neonatology: integrating narrative medicine into the neonatal intensive care unit.Journal of perinatology : official journal of the California Perinatal Association · 2023Review
- Evaluation of parental stress in neonatal intensive care unit in Iran: a national study.BMC nursing · 2023Article
- Longitudinal medical needs for periviable NICU survivors.Early human development · 2022Article
- Infant mode of death in the neonatal intensive care unit: A systematic scoping review.Journal of perinatology : official journal of the California Perinatal Association · 2022Article
- Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing.BMC medical informatics and decision making · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectiveTo assess how physicians and families understand quality of life (QOL) for NICU patients, and to explore the feasibility of developing a standardized definition for QOL. STUDY
designSurveys were developed and administered to neonatologists and eligible families. Quantitative analysis was conducted using standard statistical methods. Qualitative analysis was conducted using NVivo software. Focus groups were conducted with the same groups, and audio recordings were obtained and analyzed for recurring themes.
resultsBoth parents and physicians value QOL as a metric for guiding care in the NICU. Parents were more likely to accept higher levels of disability, while neonatologists were more likely to accept higher levels of dependence on medical equipment. In relation to infant QOL, predominant themes expressed in the parent focus groups were stress levels in the NICU, advocating as parents, and the way in which long-term outcomes were presented by the medical team; in the physician focus group, the ambiguity of predicting outcomes and thus QOL was the main theme.
conclusionsBoth parents and physicians recognize the importance of QOL in the decision-making process for critically ill infants, but the two groups differ in their assessment of what QOL means in this context. These data suggest that QOL cannot be adequately defined for standardized use in a clinical context, and as such, should be used thoughtfully by neonatologists in discussions of end- of-life care.
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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.