Development of the Cauda Equina Syndrome Core Outcome Set for research studies

Srikandarajah, Nisaharan
(2020) Development of the Cauda Equina Syndrome Core Outcome Set for research studies. PhD thesis, University of Liverpool.

[img] Text
201182809_May2020.pdf - Unspecified

Download (3MB) | Preview
[img] Text
Srikandarajah N, Wilby M, Clark S, Noble A, Williamson P, Marson T. Outcomes reported after surgery for cauda equina syndrome a systematic literature review. Spine. 2018 Sep 1;43(17)E1005..pdf - Unspecified

Download (827kB) | Preview
[img] Text
Srikandarajah N, Noble AJ, Wilby M, Clark S, Williamson PR, Marson AG. Protocol for the development of a core outcome set for cauda equina syndrome systematic literature review, qualitative interviews, Del.pdf - Unspecified

Download (527kB) | Preview
[img] Text
Srikandarajah N, Noble A, Clark S, Wilby M, Freeman BJ, Fehlings MG, Williamson PR, Marson T. Cauda Equina Syndrome Core Outcome Set (CESCOS) An international patient and healthcare professional consensus.pdf - Unspecified

Download (629kB) | Preview


Abstract Chapter1: 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 in any future research study within a specific disease area. A COS for patients with CES will be developed for use in future research studies. Chapter 2&3: A systematic literature review (SLR) was performed using PRISMA guidelines to document the outcomes used in CES studies. A total of 1873 studies were identified of which 61 met the inclusion criteria. There were 737 verbatim outcome terms reported. There was significant heterogeneity in the outcomes reported for studies after surgery for CES patients. The duration from the start of the CES to the operation was also analysed in these studies. There was significant heterogeneity in the reporting and definition of the timing to intervention in CES. Chapter 4: The outcomes of importance to patients and the lived experience of CES considering its severity was elicited through semi structured qualitative interviews. A sampling frame was used, interviews were consented for, audio recorded and transcribed for thematic analysis using NVivo. Data saturation was achieved with 22 participants. Initially, 260 verbatim outcome terms were identified- 43 of which were not identified in the SLR. Further in depth analysis revealed 4 themes of 1) varying priorities of physical health, 2) a fragmented healthcare service 3) the process of adjustment, and 4) anticipatory anxiety and diminished sense of self-worth. Chapter 5: Outcomes were combined and condensed from the SLR and from the qualitative interviews with CES patients. This resulted in 37 outcomes that were rated through two rounds of an international Delphi survey. The Delphi survey included 172 participants (104 patients, 68 healthcare professionals) who completed both rounds. The results were presented at an international consensus meeting attended by 34 key stakeholders (16 patients and 18 healthcare professionals). Sixteen outcomes were chosen for inclusion in the COS. They are incontinence of urine, urinary retention, sensation of bladder fullness, faecal incontinence, physical ability to have sexual intercourse, perineal sensation, sensation in genitals, leg muscle strength, pain due to abnormal sensation of non-painful stimulus, complications, global quality of life, occupational role functioning, social functioning, ability to do daily activities, mobility and walking and low mood and depression. Chapter 6: The COS was obtained by a transparent international consensus process involving healthcare professionals and patients with CES as key stakeholders. This COS is recommended for use in CES studies as the minimum set of outcomes to be collected.

Item Type: Thesis (PhD)
Divisions: Faculty of Health and Life Sciences > Institute of Life Courses and Medical Sciences > School of Medicine
Depositing User: Symplectic Admin
Date Deposited: 14 Aug 2020 08:56
Last Modified: 18 Jan 2023 23:48
DOI: 10.17638/03090798