Quality of life measures for fecal incontinence and their use in children.

BACKGROUND

Fecal incontinence is a common problem within society from childhood through to the elderly. Its clinical assessment has focussed on severity and frequency of soiling episodes but it is increasingly recognized to have an impact on physical, psychological and social well-being (quality of life [QOL]). This is likely to be particularly important in childhood. The aim of the present study was to critically evaluate the development and application of disease-specific QOL measures, focusing particularly on their use in children.

METHODS

Generally recognized disease-specific QOL measures for fecal incontinence were identified and their generation and validation were critically evaluated.

RESULTS

Six instruments were identified: Ditesheim and Templeton QOL Scoring System, Manchester Health Questionnaire, Hirschsprung's Disease/Anorectal Malformation Quality of Life Questionnaire (HAQL), Gastrointestinal Quality of Life Index (GIQLI), Fecal Incontinence TyPE Specification, and the Fecal Incontinence Quality of Life Scale (FIQL). Although the FIQL appeared to be the better tool for adults with fecal incontinence because it was brief and had the best validity and reliability, it needed further modification to become appropriate for use in children. In particular, items relating to sexual activity were inappropriate.

CONCLUSION

Neither the FIQL nor other disease-specific instruments met basic psychometric standards for use in children with fecal incontinence. Substantial revision of currently available instruments will be required to meet the needs of this population.