title: Quantity, Not Frequency, Predicts Bother with Urinary Incontinence and its Impact on Quality of Life in Adults with Spina Bifida.
abstract: OBJECTIVE
  The effects of urinary incontinence on health related quality of life in adults with spina bifida is poorly understood. We determined which quantification method best captures bother with urinary incontinence. We also quantified the impact of urinary incontinence on health related quality of life.
  
  
  METHODS
  We surveyed an international sample of adults with spina bifida online from January 2013 through September 2014. We evaluated dry intervals (4 hours or greater considered social continence), quantity of urinary incontinence (a lot, medium, little, none) and number of undergarments worn daily (pads, pull-ups or disposable underwear). A 5-point Likert bother scale was used. We applied validated instruments, including QUALAS-A (Quality of Life Assessment in Spina Bifida for Adults) and the generic WHOQOL-BREF (WHO Quality of Life). We analyzed data using linear regression with a range of 0 to 100 for all outcomes.
  
  
  RESULTS
  Mean age of the 461 participants was 32 years and 31.0% were male. Overall 26.5% and 51.8% of participants were dry for less than 4 hours and 4 hours or greater, respectively, while 21.7% were always dry. On multivariate analysis worse bother was predominantly determined by the quantity of urinary incontinence (a lot 32.9 and medium 16.2 vs little, p <0.0001) rather than dry intervals less than 4 hours (7.21, p = 0.08) or number of undergarments (-2.2 to 4.2, p ≥0.43). Bladder and bowel health related quality of life was lower with higher quantities of urinary incontinence (a lot -31.2, medium -23.0 and little -17.2 vs none, p <0.0001) but not for dry intervals less than 4 hours (-4.1, p = 0.14). Use of undergarments regardless of number was associated with lower health related quality of life (-10.2 to -15.4, p ≤0.001). Quantity of urinary incontinence was the main predictor of lower WHOQOL-BREF scores.
  
  
  CONCLUSIONS
  We report that adults with spina bifida and urinary incontinence have lower health related quality of life than those who are dry. Self-reported quantity of urinary incontinence was the best predictor of bother and health related quality of life.
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana. Electronic address: szymanko@iupui.edu.
authors.forename: Konrad M
authors.initials: KM
authors.lastname: Szymanski
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana.
authors.forename: Rosalia
authors.initials: R
authors.lastname: Misseri
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Whittam
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana.
authors.forename: Martin
authors.initials: M
authors.lastname: Kaefer
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana.
authors.forename: Richard C
authors.initials: RC
authors.lastname: Rink
authors.affiliation: Division of Pediatric Urology, Riley Hospital for Children at Indiana University Health, Indianapolis, Indiana.
authors.forename: Mark P
authors.initials: MP
authors.lastname: Cain
mesh_terms: D000328:Adult; D003430:Cross-Sectional Studies; D005260:Female; D006801:Humans; D008297:Male; D011788:Quality of Life; D016135:Spinal Dysraphism / Q000150:complications*; D013997:Time Factors; D014549:Urinary Incontinence / Q000175:diagnosis / Q000209:etiology* / Q000503:physiopathology*
keywords: quality of life; questionnaires; spinal dysraphism; urinary bladder; urinary incontinence