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Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Core outcomes in neonatal encephalopathy: a qualitative study with parents
Fiona Quirke1,2,3, Shabina Ariff4, Malcolm Battin5
1Health Research Board - Neonatal Encephalopathy PhD Training Network (NEPTuNE), Trinity College Dublin, Dublin, Ireland f.quirke1@nuigalway.ie.
Insights
Parents identified 54 important outcomes for infants with neonatal encephalopathy, covering development, survival, and adverse events. This research informs a core outcome set for neonatal encephalopathy treatment, including global perspectives.
Area of Science:
- Neonatal neurology
- Pediatric outcomes research
- Global health
Background:
- Neonatal encephalopathy (NE), hypoxic ischaemic encephalopathy (HIE), and birth asphyxia significantly impact infants.
- Developing a core outcome set (COS) is crucial for standardizing treatment evaluation.
- Parental perspectives are vital in identifying relevant outcomes for infants with NE.
Purpose of the Study:
- To identify outcomes important to parents of infants diagnosed with NE, HIE, or birth asphyxia.
- To incorporate diverse global perspectives (high-income and low- to middle-income countries) into the COS development process.
- To inform the development of a comprehensive COS for NE treatment.
Main Methods:
- Qualitative study utilizing 25 semistructured interviews with parents/caregivers of affected infants.
- Interviews conducted globally: 11 in high-income countries (HICs) via Zoom, 14 in low- to middle-income countries (LMICs) via phone or in-person.
- Systematic analysis of identified outcomes to map them into broader domains.
Main Results:
- Parents identified 54 distinct outcomes, categorized into 16 domains.
- Key domains include neurological, developmental (motor, cognitive, psychosocial, speech, special senses), survival, long-term disability, and parent-reported outcomes.
- Significant overlap in concerns across HICs and LMICs was observed.
Conclusions:
- Parental input is essential for defining meaningful outcomes in NE care.
- The identified outcomes and domains provide a foundation for a robust COS for NE.
- The study highlights the importance of including diverse global voices in health outcome research.
Objective:
To identify the outcomes considered important to parents or caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in high-income and low- to middle-income countries (LMiCs), as part of the outcome-identification process in developing a core outcome set (COS) for the treatment of neonatal encephalopathy.
Design:
A qualitative study involving 25 semistructured interviews with parents or other family members (caregivers) of infants who were diagnosed with, and treated for, neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia.
Setting:
Interviews were conducted in high-income countries (HiCs) (n=11) by Zoom video conferencing software and in LMiCs (n=14) by phone or face to face.
Findings:
Parents identified 54 outcomes overall, which mapped to 16 outcome domains. The domains identified were neurological outcomes, respiratory outcomes, gastrointestinal outcomes, cardiovascular outcomes, motor development, cognitive development, development (psychosocial), development (special senses), cognitive development, development (speech and social), other organ outcomes, survival/living outcomes, long-term disability, hospitalisation, parent-reported outcomes and adverse events.
Conclusions:
This study provides insight into the outcomes that parents of infants diagnosed with neonatal encephalopathy have identified as the most important, to be considered in the process of developing a COS for the treatment of neonatal encephalopathy. We also provide description of the processes employed to ensure the inclusion of participants from LMiCs as well as HiCs.
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