Objective: To provide an overview of clinical assessments and diagnostic tools, self-report measures (SRMs) and data sets used in neurogenic bladder and bowel (NBB) dysfunction and recommendations for their use with persons with spinal cord injury /disease (SCI/D). Methods: Experts in SCI/D conducted literature reviews, compiled a list of NBB related assessments and measures, reviewed their psychometric properties, discussed their use in SCI/D and issued recommendations for the National Institutes of Health (NIH), National Institute of Neurological Disorders and Stroke (NINDS) Common Data Elements (CDEs) guidelines.Results: Clinical assessments included 15 objective tests and diagnostic tools for neurogenic bladder and 12 for neurogenic bowel. Following a two-phase evaluation, eight SRMs were selected for final review with the Qualiveen and Short-Form (SF) Qualiveen and the Neurogenic Bowel Dysfunction Score (NBDS) being recommended as supplemental, highly-recommended due to their strong psychometrics and extensive use in SCI/D. Two datasets and other SRM measures were recommended as supplemental.Conclusion: There is no one single measure that can be used to assess NBB dysfunction across all clinical research studies. Clinical and diagnostic tools are here recommended based on specific medical needs of the person with SCI/D. Following the CDE for SCI studies guidelines, we recommend both the SF-Qualiveen for bladder and the NBDS for bowel as relatively short measures with strong psychometrics. Other measures are also recommended. A combination of assessment tools (objective and subjective) to be used jointly across the spectrum of care seems critical to best capture changes related to NBB and develop better treatments.
The journal of spinal cord medicine. 2020 Mar [Epub]
Denise G Tate, Tracey Wheeler, Giulia I Lane, Martin Forchheimer, Kim D Anderson, Fin Biering-Sorensen, Anne P Cameron, Bruno Gallo Santacruz, Lyn B Jakeman, Michael J Kennelly, Steve Kirshblum, Andrei Krassioukov, Klaus Krogh, M J Mulcahey, Vanessa K Noonan, Gianna M Rodriguez, Ann M Spungen, David Tulsky, Marcel W Post
Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, Michigan, USA., Craig H Neilsen Foundation, Encino, California, USA., Department of Urology, University of Michigan, Ann Arbor, Michigan, USA., Department of Physical Medicine and Rehabilitation, Metro Health Medical Center, Case Western Reserve University, Cleveland, Ohio, USA., Clinic for Spinal Cord Injuries, Rigshospitalet, University of Copenhagen, Copenhagen, Denmark., Coloplast A/S, Humlebaek, Denmark., National Institute of Neurological Disorders and Stroke, National Institutes of Health, Bethesda, Maryland, USA., Department of Urology, Carolinas Medical Center, Charlotte, North Carolina, USA., Rutgers New Jersey Medical School, Kessler Foundation, Kessler Institution for Rehabilitation, West Orange, New Jersey, USA., International collaboration On Repair Discoveries (ICORD), Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada., Department of Clinical Medicine, Department of Hepatology and Gastroenterology, Aarhus University Hospital, Aarhus, Denmark., Jefferson College of Rehabilitation Sciences, Thomas Jefferson University, Philadelphia, Pennsylvania, USA., The Praxis Spinal Institute, The Rick Hansen Institute, Vancouver, British Columbia, Canada., VA RR&D National Center of Excellence for the Medical Consequences of Spinal Cord Injury, James J Peters VA Medical Center, Bronx, New York, USA., Department of Physical Therapy and Psychological & Brain Sciences, University of Delaware, Newark, Delaware, USA., Department of Rehabilitation Medicine, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands.