Abstract
Study designProspective observational study.ObjectivesA tool to help decision-making tool for Neurogenic Bowel Dysfunction (NBD) in individuals with SCI is needed. We present a project to create and validate a new tool, the Monitoring Efficacy of NBD Treatment On Response (MENTOR), and to determine its level of concordance with decisions made by experienced clinicians in the field.SettingUK, Denmark, USA, Italy, The Netherlands, Germany.MethodsThe first phase was creation of the tool through a modified Delphi process. The second phase was the validation, wherein individuals with spinal cord injury with NBD were asked to complete the MENTOR tool immediately prior to clinic consultation. From the responses to the questionnaire of the tool, each participant was allocated into one of three categories reflecting the possible therapeutic recommendations (“recommend change”, “further discussion” and “monitoring”). An expert clinician then assessed the participant, blinded to MENTOR results, and made an independent treatment decision.ResultsA total of 248 MENTOR forms were completed. Strong agreement was found when the MENTOR tool recommended monitoring (92%) or treatment change (83%); the lowest concordance when the decision was for the “further discussion” option (59%). Patient acceptability was reported by 97% of individuals.ConclusionsMENTOR is an easy to use tool to monitor the treatment of NBD and determinate progression through the clinical pathway. This validation study shows good correspondence between expert clinician opinion and MENTOR result. The tool has potential to be used in other patient groups, following further studies.
Highlights
Supplementary information The online version of this article contains supplementary material, which is available to authorised users.GI Physiology Unit, University College Hospital, London, UK 2 Department of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark 3 Kessler Institute for Rehabilitation, Rutgers New Jersey MedicalSchool, New Jersey, USA 4 Pelvic Floor Unit, Aarhus University Hospital, Aarhus, Denmark 5 Spinal Unit, Niguarda Hospital, Milan, ItalyNeurogenic bowel dysfunction (NBD) is a term used to describe gastrointestinal symptoms that complicate lesions or diseases of the central nervous system
For individuals with chronic conditions in the community, the prevalence of Neurogenic Bowel Dysfunction (NBD) may be as high as 98% [12] and 40% report being dissatisfied with their current bowel management [13]
This may have an impact on the fact that hospitalisations are twice as common in people with NBD symptoms compared with those individuals with spinal cord injury (SCI) with wellregulated bowel function [14]
Summary
Symptoms of NBD affect the majority of individuals. For individuals with chronic conditions in the community, the prevalence of NBD may be as high as 98% [12] and 40% report being dissatisfied with their current bowel management [13]. A survey of 287 community-dwelling individuals with SCI identified that 70% had not had a change of any aspect of their bowel management in the preceding 5 years [13]. This may have an impact on the fact that hospitalisations are twice as common in people with NBD symptoms compared with those individuals with SCI with wellregulated bowel function [14]. NBD influences general physical and psychological health [15, 16]
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