Please use this identifier to cite or link to this item: https://hdl.handle.net/2440/123360
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Type: Journal article
Title: Cauda Equina Syndrome Core Outcome Set (CESCOS): an international patient and healthcare professional consensus for research studies
Author: Srikandarajah, N.
Noble, A.
Clark, S.
Wilby, M.
Freeman, B.J.C.
Fehlings, M.G.
Williamson, P.R.
Marson, T.
Citation: PLoS One, 2020; 15(1):e0225907-1-e0225907-15
Publisher: Public Library of Science (PLoS)
Issue Date: 2020
ISSN: 1932-6203
1932-6203
Statement of
Responsibility: 
Nisaharan Srikandarajah, Adam Noble, Simon Clark, Martin Wilby, Brian J.C. Freeman, Michael G. Fehlings, Paula R. Williamson, Tony Marson
Abstract: Background: Cauda Equina Syndrome (CES) is an emergency condition that requires acute intervention and can lead to permanent neurological deficit in working age adults. A Core Outcome Set (COS) is the minimum set of outcomes that should be reported by a research study within a specific disease area. There is significant heterogeneity in outcome reporting for CES, which does not allow data synthesis between studies. The hypothesis is that a COS for CES can be developed for future research studies using patients and healthcare professionals (HCPs) as key stakeholders. Methods and Findings: Qualitative semi-structured interviews with CES patients were audio-recorded, transcribed and analysed using NVivo to identify the outcomes of importance. These were combined with the outcomes obtained from a published systematic literature review of CES patients. The outcomes were grouped into a list of 37, for rating through two rounds of an international Delphi survey according to pre-set criteria. The Delphi survey had an overall response rate of 63% and included 172 participants (104 patients, 68 HCPs) from 14 countries who completed both rounds. Thirteen outcomes reached consensus at the end of the Delphi survey and there was no attrition bias detected. The results were discussed at an international consensus meeting attended by 34 key stakeholders (16 patients and 18 HCPs) from 8 countries. A further three outcomes were agreed to be included. There was no selection bias detected at the consensus meeting. There are 16 outcomes in total in the CESCOS. Discussion: This is the first study in the literature that has determined the core outcomes in CES using a transparent international consensus process involving healthcare professionals and CES patients as key stakeholders. This COS is recommended as the most important outcomes to be reported in any research study investigating CES outcomes and will allow evidence synthesis in CES.
Keywords: Humans
Registries
Consensus
Quality of Life
Delphi Technique
Adolescent
Adult
Aged
Middle Aged
Health Personnel
Patients
Female
Male
Urinary Bladder
Interviews as Topic
Young Adult
Stakeholder Participation
Cauda Equina Syndrome
Outcome Assessment, Health Care
Rights: © 2020 Srikandarajah et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
DOI: 10.1371/journal.pone.0225907
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