TY - JOUR T1 - Core outcomes in neonatal encephalopathy: a qualitative study with parents JF - BMJ Paediatrics Open JO - BMJ Paediatrics Open DO - 10.1136/bmjpo-2022-001550 VL - 6 IS - 1 SP - e001550 AU - Fiona Quirke AU - Shabina Ariff AU - Malcolm Battin AU - Caitlin Bernard AU - Frank H Bloomfield AU - Mandy Daly AU - Declan Devane AU - David M Haas AU - Patricia Healy AU - Tim Hurley AU - Vincent Kibet AU - Jamie J Kirkham AU - Sarah Koskei AU - Shireen Meher AU - Eleanor Molloy AU - Maira Niaz AU - Elaine Ní Bhraonáin AU - Christabell Omukagah Okaronon AU - Farhana Tabassum AU - Karen Walker AU - Linda Biesty Y1 - 2022/07/01 UR - http://bmjpaedsopen.bmj.com/content/6/1/e001550.abstract N2 - 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. ER -