Cauda Equina Syndrome Core Outcome Set (CESCOS): An international patient and healthcare professional consensus for research studies
Autoři:
Nisaharan Srikandarajah aff001; Adam Noble aff002; Simon Clark aff003; Martin Wilby aff003; Brian J. C. Freeman aff004; Michael G. Fehlings aff005; Paula R. Williamson aff006; Tony Marson aff001
Působiště autorů:
Institute of Translational Medicine, University of Liverpool, Liverpool, Merseyside, United Kingdom
aff001; Department of Health Services Research, Institute of Population Health Sciences, University of Liverpool, Liverpool, Merseyside, United Kingdom
aff002; Department of Spinal Surgery, The Walton Centre NHS Foundation Trust, Liverpool, Merseyside, United Kingdom
aff003; Department of Spinal Surgery, Royal Adelaide Hospital, University of Adelaide, Adelaide, Australia
aff004; Division of Neurosurgery and Spine Program, Toronto Western Hospital, University Health Network, University of Toronto, Toronto, Ontario, Canada
aff005; MRC North West Hub for Trials Methodology Research, Institute of Translational Medicine, University of Liverpool, Liverpool, Merseyside, United Kingdom
aff006
Vyšlo v časopise:
PLoS ONE 15(1)
Kategorie:
Research Article
doi:
https://doi.org/10.1371/journal.pone.0225907
Souhrn
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.
Klíčová slova:
Bladder – Echinococcosis – Emotions – Lower back pain – Myalgia – Pain sensation – Quality of life – Sensory perception
Zdroje
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