title: Patient reported outcomes measures in neurogenic bladder and bowel: A systematic review of the current literature.
abstract: OBJECTIVE
  To describe existing bladder and bowel specific quality of life (QoL) measurement tools, QoL in patients with multiple sclerosis (MS), spinal cord injury (SCI), Parkinson's Disease (PD), stroke, or spina bifida (SB) affected by bladder or bowel dysfunction, and the impact of specific bladder and bowel management on QoL.
  
  
  METHODS
  We performed a systematic review in PubMed/Medline databases in accordance with the PRISMA statement for English publications between January 1, 2000 and January 1, 2014. Articles were first screened based on their abstract and select full-text articles were then reviewed for eligibility. Articles with no QoL or PROM assessing urinary or bowel dysfunction were excluded. Risk of bias assessment included randomization, incomplete outcomes data, selective outcomes reporting, and other biases. All articles were graded using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system as per the Cochrane Handbook for Systematic Reviews of Interventions.
  
  
  RESULTS
  The most common QoL measurement tool for urinary and bowel dysfunction was the Medical Outcomes Study SF-36. Twelve (24%) studies used only non-validated QoL questionnaires. Only three urinary or bowel specific QoL measures were found: the Qualiveen questionnaire, the FICQoL, and the QoL-BM. Several studies identified instances were clinical and patient-reported outcomes were inconsistent particularly with indwelling urinary catheter usage and reconstructive surgery. Additionally, certain clinical outcomes surrogates commonly used as primary outcomes measures may not correlate with the patient reported outcomes (PRO).
  
  
  CONCLUSIONS
  Current PRO measures (PROM) and QoL assessments are heterogeneous and several inconsistencies in clinical and PRO for various management options exist. Standardized PROM will help identify optimal bladder and bowel management for patients with neurologic conditions.
authors.affiliation: The Center for Reconstructive Urology and Men's Health, University of Utah, Salt Lake City, Utah.
authors.forename: Darshan P
authors.initials: DP
authors.lastname: Patel
authors.affiliation: Department of Urology, University of Minnesota, Minneapolis, Minnesota.
authors.forename: Sean P
authors.initials: SP
authors.lastname: Elliott
authors.affiliation: Department of Urology, University of Michigan, Ann Arbor, Michigan.
authors.forename: John T
authors.initials: JT
authors.lastname: Stoffel
authors.affiliation: The Center for Reconstructive Urology and Men's Health, University of Utah, Salt Lake City, Utah.
authors.forename: William O
authors.initials: WO
authors.lastname: Brant
authors.affiliation: The Center for Reconstructive Urology and Men's Health, University of Utah, Salt Lake City, Utah.
authors.forename: James M
authors.initials: JM
authors.lastname: Hotaling
authors.affiliation: The Center for Reconstructive Urology and Men's Health, University of Utah, Salt Lake City, Utah.
authors.forename: Jeremy B
authors.initials: JB
authors.lastname: Myers
mesh_terms: D006801:Humans; D055496:Neurogenic Bowel / Q000503:physiopathology*; D063868:Patient Outcome Assessment; D011788:Quality of Life; D011795:Surveys and Questionnaires; D001750:Urinary Bladder, Neurogenic / Q000503:physiopathology*
keywords: fecal incontinence; neurogenic; neurogenic bowel; patient reported outcomes; quality of life; urinary bladder; urinary incontinence