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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Health-related quality of life for infants in the neonatal intensive care unit
R D Boss1, H I Kinsman, P K Donohue
1Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD 21287, USA. rboss1@jhmi.edu
Insights
Developing reliable health-related quality of life (HRQOL) measures for critically ill infants is crucial. Current measures are inadequate for neonates, hindering informed care decisions and research. New approaches are needed for this vulnerable population.
Area of Science:
- Pediatric critical care medicine
- Health services research
- Quality of life research
Background:
- Clinicians and families face challenges in weighing treatment benefits against infant pain and suffering for critically ill infants.
- There is a lack of concrete measures for infant suffering or quality of life to guide care decisions.
- Existing health-related quality of life (HRQOL) measures are well-developed for adults and older children but not for neonates.
Purpose of the Study:
- To review existing evidence and practices related to HRQOL in intensive care and pediatric settings.
- To identify existing HRQOL measures that could be adapted for neonates.
- To explore neonatal intensive care unit (NICU) measures and practices that could inform the development of new HRQOL measures for infants.
Main Methods:
- Literature review of HRQOL measures and practices in pediatric and intensive care settings.
- Analysis of existing HRQOL frameworks and their applicability to neonates.
- Examination of current NICU assessment tools and care practices.
Main Results:
- Existing HRQOL measures for older populations are largely unsuitable for neonates.
- There is a significant gap in validated HRQOL measures for critically ill infants.
- NICU practices and some existing measures offer potential starting points for developing infant-specific HRQOL tools.
Conclusions:
- There is a critical need for validated HRQOL measures tailored to neonates and critically ill infants.
- Adapting existing measures and leveraging NICU practices can inform the development of novel infant HRQOL assessment tools.
- Advancing HRQOL research methodology for infants is essential for improving care and decision-making in pediatric intensive care settings.
Abstract:
When discussing the benefits and burdens of medical interventions for critically ill infants, clinicians and families are challenged to weigh the uncertainties of treatment success with infant pain and suffering. Concrete measures of infant suffering or quality of life, which could inform infant care and decision-making are lacking. Although consistent and reliable health-related quality of life (HRQOL) definitions and measures have been extensively developed for adults and older children, they have not been relevant to neonates or infants. Advancing HRQOL research methodology is an objective of Healthy People 2020. This paper will review the evidence and practices relevant to HRQOL with a focus on intensive care and pediatric settings. We will highlight existing HRQOL measures, which could be adapted for neonates and existing neonatal intensive care unit measures and practices, which could inform new measures of HRQOL.
