RT Journal Article
SR Electronic
T1 Core outcomes in neonatal encephalopathy: a qualitative study with parents
JF BMJ Paediatrics Open
JO BMJ Paediatrics Open
FD BMJ Publishing Group Ltd
SP e001550
DO 10.1136/bmjpo-2022-001550
VO 6
IS 1
A1 Fiona Quirke
A1 Shabina Ariff
A1 Malcolm Battin
A1 Caitlin Bernard
A1 Frank H Bloomfield
A1 Mandy Daly
A1 Declan Devane
A1 David M Haas
A1 Patricia Healy
A1 Tim Hurley
A1 Vincent Kibet
A1 Jamie J Kirkham
A1 Sarah Koskei
A1 Shireen Meher
A1 Eleanor Molloy
A1 Maira Niaz
A1 Elaine Ní Bhraonáin
A1 Christabell Omukagah Okaronon
A1 Farhana Tabassum
A1 Karen Walker
A1 Linda Biesty
YR 2022
UL http://bmjpaedsopen.bmj.com/content/6/1/e001550.abstract
AB 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.All data relevant to the study are included in the article or uploaded as supplementary information. Public data relevant to the study are included in the article or uploaded as supplementary information.