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Cauda Equina Syndrome Core Outcome Set (CESCOS): An international patient and healthcare professional consensus for research studies.
Copyright policy )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.
Medical Subject Headings: education
Microsoft Academic Graph classification: Cauda equina syndrome medicine.disease medicine Systematic review MEDLINE Health care business.industry business Delphi method Quality of life (healthcare) Selection bias media_common.quotation_subject media_common Family medicine medicine.medical_specialty Young adult
Medicine, R, Science, Q, Multidisciplinary, Research Article, Biology and Life Sciences, Neuroscience, Sensory Perception, Psychology, Social Sciences, Emotions, Physiology, Sensory Physiology, Somatosensory System, Pain Sensation, Medicine and Health Sciences, Sensory Systems, Health Care, Quality of Life, Anatomy, Renal System, Bladder, Diagnostic Medicine, Signs and Symptoms, Pain, Lower Back Pain, Pathology and Laboratory Medicine, Myalgia, Parasitic Diseases, Helminth Infections, Echinococcosis, Tropical Diseases, Neglected Tropical Diseases, Adolescent, Adult, Aged, Cauda Equina Syndrome, Consensus, Delphi Technique, Female, Health Personnel, Humans, Interviews as Topic, Male, Middle Aged, Outcome Assessment, Health Care, Patients, Registries, Stakeholder Participation, Urinary Bladder, Young Adult
Medicine, R, Science, Q, Multidisciplinary, Research Article, Biology and Life Sciences, Neuroscience, Sensory Perception, Psychology, Social Sciences, Emotions, Physiology, Sensory Physiology, Somatosensory System, Pain Sensation, Medicine and Health Sciences, Sensory Systems, Health Care, Quality of Life, Anatomy, Renal System, Bladder, Diagnostic Medicine, Signs and Symptoms, Pain, Lower Back Pain, Pathology and Laboratory Medicine, Myalgia, Parasitic Diseases, Helminth Infections, Echinococcosis, Tropical Diseases, Neglected Tropical Diseases, Adolescent, Adult, Aged, Cauda Equina Syndrome, Consensus, Delphi Technique, Female, Health Personnel, Humans, Interviews as Topic, Male, Middle Aged, Outcome Assessment, Health Care, Patients, Registries, Stakeholder Participation, Urinary Bladder, Young Adult
Medical Subject Headings: education
Microsoft Academic Graph classification: Cauda equina syndrome medicine.disease medicine Systematic review MEDLINE Health care business.industry business Delphi method Quality of life (healthcare) Selection bias media_common.quotation_subject media_common Family medicine medicine.medical_specialty Young adult
- University of Adelaide Australia
- University of Liverpool United Kingdom
- Royal Adelaide Hospital Australia
- Walton Centre United Kingdom
- University Health Network Canada
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5 Gleave JR, Macfarlane R. Cauda equina syndrome: what is the relationship between timing of surgery and outcome?Br J Neurosurg. 2002;16(4):325–8. 10.1080/0268869021000032887 .12389883 [OpenAIRE] [PubMed] [DOI]
6 Srikandarajah N, Boissaud-Cooke MA, Clark S, Wilby MJ. Does early surgical decompression in cauda equina syndrome improve bladder outcome?Spine (03622436). 2015;40(8):580–3. 10.1097/BRS.0000000000000813 . Language: Engli sh. Entry Date: 20150923. Revision Date: 20160228. Publication Type: journal article. Journal Subset: Allied Health. [OpenAIRE] [DOI]
7 Daniels EW, Gordon Z, French K, Ahn UM, Ahn NU. Review of medicolegal cases for cauda equina syndrome: what factors lead to an adverse outcome for the provider?Orthopedics. 2012;35(3):200–. 10.3928/01477447-20120222-15 . Language: English. Entry Date: 20120803. Revision Date: 20170411. Publication Type: journal article. [OpenAIRE] [DOI]
8 Korse NS, Jacobs WC, Elzevier HW, Vleggeert-Lankamp CL. Complaints of micturition, defecation and sexual function in cauda equina syndrome due to lumbar disk herniation: a systematic review. Eur Spine J. 2013;22(5):1019–29. 10.1007/s00586-012-2601-8 .23238848 [OpenAIRE] [PubMed] [DOI]
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10 Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, et al Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13(1):132.22867278 [OpenAIRE] [PubMed]
- University of Adelaide Australia
- University of Liverpool United Kingdom
- Royal Adelaide Hospital Australia
- Walton Centre United Kingdom
- University Health Network Canada
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.