Evidence map›Paper›PMID 36053648›Full record

ArticleBMJ paediatrics open2022

Core outcomes in neonatal encephalopathy: a qualitative study with parents.

Fiona Quirke, Shabina Ariff, Malcolm Battin, Caitlin Bernard, Frank H Bloomfield, Mandy Daly, Declan Devane, David M Haas, Patricia Healy, Tim Hurley and 11 more

Erratum issuedOpen access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMJ paediatrics open, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 11 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed, 2 pooled it
7.5field-weighted citation impact, top 3% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed, 2 syntheses or guidelines pooled it, 20 citations in OpenAlex.

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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

21 authors at 11 institutions in 7 countries.

Fiona QuirkeHealth Research Board - Neonatal Encephalopathy PhD Training Network (NEPTuNE), Trinity College Dublin, Dublin, Ireland f.quirke1@nuigalway.ie.ORCID 0000-0001-9155-5543
Shabina AriffDepartment of Pediatrics & Child Health, The Aga Khan University, Karachi, Pakistan.
Malcolm BattinAuckland City Hospital, Auckland, New Zealand.ORCID 0000-0001-9622-0523
Caitlin BernardDepartment of Obstetrics and Gynecology, Indiana University, Bloomington, Indiana, USA.
Frank H BloomfieldLiggins Institute, University of Auckland, Auckland, New Zealand.ORCID 0000-0001-6424-6577
Mandy DalyAdvocacy and Policymaking Irish Neonatal Health Alliance, Wicklow, Ireland.
Declan DevaneHealth Research Board - Neonatal Encephalopathy PhD Training Network (NEPTuNE), Trinity College Dublin, Dublin, Ireland.
David M HaasDepartment of Obstetrics and Gynecology, Indiana University, Bloomington, Indiana, USA.
Patricia HealySchool of Nursing & Midwifery, National University of Ireland Galway, Galway, Ireland.
Tim HurleyHealth Research Board - Neonatal Encephalopathy PhD Training Network (NEPTuNE), Trinity College Dublin, Dublin, Ireland.
Vincent KibetAMPATH, Eldoret, Kenya.
Jamie J KirkhamCentre for Biostatistics, The University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.ORCID 0000-0003-2579-9325
Sarah KoskeiMoi University, Eldoret, Kenya.
Shireen MeherUniversity of Birmingham, Birmingham, UK.
Eleanor MolloyHealth Research Board - Neonatal Encephalopathy PhD Training Network (NEPTuNE), Trinity College Dublin, Dublin, Ireland.
Maira NiazDepartment of Paediatrics & Child Health, Aga Khan University, Karachi, Pakistan.
Elaine Ní BhraonáinFamily Support Liaison, Irish Neonatal Health Alliance, Wicklow, Ireland.
Christabell Omukagah OkarononAMPATH, Eldoret, Kenya.
Farhana TabassumAga Khan University, Karachi, Pakistan.
Karen WalkerGrace Centre for Newborn Care, The Children's Hospital at Westmead, Sydney, New South Wales, Australia.ORCID 0000-0002-4149-2270
Linda BiestySchool of Nursing & Midwifery, National University of Ireland Galway, Galway, Ireland.
Ollscoil na Gaillimhe – University of Galway · IEAga Khan University · PKAMPATH · KEIndiana University Bloomington · USTrinity College Dublin · IEAuckland City Hospital · NZManchester Academic Health Science Centre · GBMoi University · KEThe University of Sydney · AUUniversity of Auckland · NZUniversity of Birmingham · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

objectiveTo 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.

designA 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.

settingInterviews 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.

findingsParents 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.

conclusionsThis 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.

Indexed as

Asphyxia NeonatorumHypoxia-Ischemia, BrainInfant, Newborn, DiseasesAsphyxiaHumansInfantInfant, NewbornOutcome Assessment, Health CareParentsNeonatologyNeurologyQualitative research

Identifiers

PMID36053648
PMCPMC9328095
OpenAlexW4287448575

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.