Self-reported effect of childhood incontinence on quality of life.

OBJECTIVE: The aim of this study was to generate an understanding of the child's perception of the impact of bladder and bowel dysfunction on aspects of their life, in order to inform the later development of a continence-specific pediatric quality-of-life tool.

DESIGN: A 28-item instrument, measuring 6 domains of quality of life, was developed based on a modified Delphi consultation process and administered to children being treated for incontinence in 10 countries.

RESULTS: Data from 156 children between 6 and 17 years of age in Hong Kong, Japan, Australia, United States, Italy, Turkey, Germany, Holland, Belgium, and Denmark were analyzed. Mean domain scores, when ranked in descending order, were self-esteem 57%, mental health 52%, independence 48.5%, family 46%, social interaction 43%, and body image 39.5%. Significant variables associated with a high total score (indicating greater impairment in quality of life) were combined day-and-night symptoms (P = .031) and male gender (P = .027). All domain scores were more significantly impaired (higher scores) when a bowel disorder coexisted with bladder dysfunction. Low treatment efficacy was significantly associated with more impaired self-esteem and mental health scores (r = -0.125, P = .025; r = -0.241, P = .005; r = -0.174, P = .045, respectively).

CONCLUSIONS: Multiple domains reflecting quality-of-life effects are adversely affected in children with incontinence, indicating the need to measure the impact of impairment in affected children and the influence of treatment. Boys who experience day-and-night lower urinary tract symptoms and experience bowel dysfunction are at greatest risk.