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Understanding cauda equina syndrome: protocol for a UK multicentre prospective observational cohort study.

ABSTRACT: INTRODUCTION:Cauda equina syndrome (CES) is a potentially devastating condition caused by compression of the cauda equina nerve roots. This can result in bowel, bladder and sexual dysfunction plus lower limb weakness, numbness and pain. CES occurs infrequently, but has serious potential morbidity and medicolegal consequences. This study aims to identify and describe the presentation and management of patients with CES in the UK. METHODS AND ANALYSIS:Understanding Cauda Equina Syndrome (UCES) is a prospective and collaborative multicentre cohort study of adult patients with confirmed CES managed at specialist spinal centres in the UK. Participants will be identified using neurosurgical and orthopaedic trainee networks to screen referrals to spinal centres. Details of presentation, investigations, management and service usage will be recorded. Both patient-reported and clinician-reported outcome measures will be assessed for 1?year after surgery. This will establish the incidence of CES, current investigation and management practices, and adherence to national standards of care. Outcomes will be stratified by clinical presentation and patient management. Accurate and up to date information about the presentation, management and outcome of patients with CES will inform standards of service design and delivery for this important but infrequent condition. ETHICS AND DISSEMINATION:UCES received a favourable ethical opinion from the South East Scotland Research Ethics Committee 02 (Reference: 18/SS/0047; IRAS ID: 233515). All spinal centres managing patients with CES in the UK will be encouraged to participate in UCES. Study results will be published in medical journals and shared with local participating sites. TRIAL REGISTRATION NUMBER:ISRCTN16828522; Pre-results.

SUBMITTER: Woodfield J

PROVIDER: S-EPMC6303568 | biostudies-literature | 2018 Dec

REPOSITORIES: biostudies-literature

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Understanding cauda equina syndrome: protocol for a UK multicentre prospective observational cohort study.

Woodfield Julie J Hoeritzauer Ingrid I Jamjoom Aimun A B AAB Pronin Savva S Srikandarajah Nisaharan N Poon Michael M Roy Holly H Demetriades Andreas K AK Sell Philip P Eames Niall N Statham Patrick F X PFX

BMJ open 20181214 12

<h4>Introduction</h4>Cauda equina syndrome (CES) is a potentially devastating condition caused by compression of the cauda equina nerve roots. This can result in bowel, bladder and sexual dysfunction plus lower limb weakness, numbness and pain. CES occurs infrequently, but has serious potential morbidity and medicolegal consequences. This study aims to identify and describe the presentation and management of patients with CES in the UK.<h4>Methods and analysis</h4>Understanding Cauda Equina Synd ...[more]

PMID: 30552283

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Project description:IntroductionChiari 1 malformation (CM1) is a structural abnormality of the hindbrain characterised by the descent of the cerebellar tonsils through the foramen magnum. The management of patients with CM1 remains contentious since there are currently no UK or international guidelines for clinicians. We therefore propose a collaborative, prospective, multicentre study on the investigation, management and outcome of CM1 in the UK: the UK Chiari 1 Study (UKC1S). Our primary objective is to determine the health-related quality of life (HRQoL) in patients with a new diagnosis of CM1 managed either conservatively or surgically at 12 months of follow-up. We also aim to: (A) determine HRQoL 12 months following surgery; (B) measure complications 12 months following surgery; (C) determine the natural history of patients with CM1 treated conservatively without surgery; (D) determine the radiological correlates of presenting symptoms, signs and outcomes; and (E) determine the scope and variation within UK practice in referral patterns, patient pathways, investigations and surgical decisions.Methods and analysisThe UKC1S will be a prospective, multicentre and observational study that will follow the British Neurosurgical Trainee Research Collaborative model of collaborative research. Patients will be recruited after attending their first neurosurgical outpatient clinic appointment. Follow-up data will be collected from all patients at 12 months from baseline regardless of whether they are treated surgically or not. A further 12-month postoperative follow-up timepoint will be added for patients treated with decompressive surgery. The study is expected to last three years.Ethics and disseminationThe UKC1S received a favourable ethical opinion from the East Midlands Leicester South Research Ethics Committee (REC reference: 20/EM/0053; IRAS 269739) and the Health Research Authority. The results of the study will be published in peer-reviewed medical journals, presented at scientific conferences, shared with collaborating sites and shared with participant patients if they so wish.

Project description:IntroductionCauda Equina Syndrome (CES) can cause persisting life-changing dysfunction. There is scarce literature regarding the long-term assessment of CES symptoms, and rarer still is the impact of these symptoms on mental wellbeing investigated. This study assessed the long-term patient reported mental wellbeing outcomes of post-operative CES patients.MethodsPatients who underwent surgery for CES between August 2013 and November 2014 were identified using an ethically approved database. They then completed validated questionnaires over the telephone assessing their mental and physical functioning (Short-Form 12 Questionnaire), generating the Physical Component Summary (PCS) and Mental Component Summary (MCS). Bladder, bowel and sexual function were also assessed using validated questionnaires. MCS scores were compared to both the Scottish mean and previously published cut-offs indicating patients at risk of depression. Correlations of MCS with bladder, bowel, sexual and physical dysfunction were examined and multifactorial regression to predict MCS from these variables analysed. Independent t-tests assessed the mean difference in MCS between patients presenting with incomplete CES (CES-I) and CES with retention (CES-R) and between those with radiologically confirmed and impending CES.ResultsForty-six participants with a mean follow-up time of 43 months completed the study. The mean (±SD) MCS was 49 (±11.8) with 22% demonstrating poor mental health related quality of life in comparison to the Scottish mean. Overall, 37% had scores consistent with being at risk for depression with in the last 30 days, and 45% within the last 12 months. MCS was significantly correlated with Urinary Symptoms Profile (USP) score (-0.608), NBDS score (-0.556), ASEX score (-0.349) and PCS score (0.413) with worse bladder, bowel, sexual and physical dysfunction associated with worse MCS score. Multifactorial regression analysis demonstrated both urinary (USP score p = 0.031) and bowel function (NBDS score p = 0.009) to be significant predictive variables of mental health related quality of life. There were no significant mean differences in MCS between those presenting with CES-I and CES-R or those with radiologically complete and impending CES.DiscussionThis study demonstrates a high frequency of being at risk for depression in patients with CES and identifies outcome measures (physical, sexual and more so bladder and bowel dysfunction) associated with poorer mental wellbeing. Our large cohort and long follow-up highlight that CES patients should be considered at risk of depression, and the need to consider mental health outcomes following CES surgery.

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Understanding cauda equina syndrome: protocol for a UK multicentre prospective observational cohort study.

Publications

Understanding cauda equina syndrome: protocol for a UK multicentre prospective observational cohort study.

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