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 semi-structured 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.
This study aims to identify the outcomes considered important to parents/caregivers of infants diagnosed with neonatal encephalopathy, hypoxic ischaemic encephalopathy or birth asphyxia in HiCs and LMiCs, as part of the outcome-identification process in developing a COS for interventions for the treatment of neonatal encephalopathy.
ContributorsFiona Quirke, Shabina Ariff, Malcolm Battin, Caitlin Bernard, Frank H Bloomfield, Mandy Daly, Declan Devane, David M Haas, Patricia Healy, Tim Hurley, Vincent Kibet, Jamie J Kirkham, Sarah Koskei, Shireen Meher, Eleanor Molloy, Maira Niaz, Elaine Ní Bhraonáin, Christabell Omukagah Okaronon, Farhana Tabassum, Karen Walker, Linda Biesty
Disease Category: Neurology
Disease Name: Neonatal Encephalopathy
Age Range: Unknown
Sex: Either
Nature of Intervention:
- Consumers (caregivers)
- Patient perspectives
- Interview
Qualitive interviews were held. The eligibility criteria for inclusion in this study were that
participants were over 18 years of age and a parent or other family member who care for, or have cared for, an infant that was diagnosed with, and received treatment
for, neonatal encephalopathy, hypoxic-ischaemic encephalopathy or birth asphyxia