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Background: Fecal incontinence (FI) and constipation in children with spina bifida (SB) may have a significant impact on quality of life (QOL). Existing condition-specific surveys are either parent-reported or focus on non-neurogenic bowel dysfunction. The purpose of this study was to develop an adolescent-reported survey to assess the impact of bowel dysfunction on QOL in SB patients and evaluate its reliability and factorial validity.
Methods: We performed a cross-sectional study of patients in our Spina Bifida Center from November 2010 to June 2013. Patients, ages 11-17 years, with a history of constipation and/or FI and their caregivers were recruited during clinic visits. Control patients, ages 11-17 years, with no evidence of bowel dysfunction were recruited from the stone clinic. Exclusion criteria were lack of English fluency (verbal or written), insufficient reading skills (IQ<70 or <4th grade reading level) or an incontinent urinary or fecal diversion. Participants were asked to complete a 5-day bowel diary. The Adolescent Fecal Incontinence and Constipation Quality of Life Scale (A-FICQL) was developed using expert opinion, modification of existing surveys and key informant interviews in order to evaluate clarity of the instrument and elicit additional items. This instrument measures five domains: 1) independence, 2) catheterization regimen, 3) constipation severity, 4) FI severity and 5) adapation/bother. The Flesch Kincaid Grade Level test demonstrated a fourth-grade reading level. Psychometric assessment, including reliability and construct validity using factor analysis, was performed. Test re-test reliability was measured using the Pearson correlation coefficient in 9 patients who completed the same survey two weeks later. Given that the items were scored in multiple-ordered categories, a factor analysis model with four-fold correlations was tested in order to measure the factorial validity of the instrument.
Results: Of the 65 study-eligible patients approached, 25 (of whom were 11 boys) completed the A-FICQL (median age 12.6 years, IQR 11.8-14.7 years). Twenty-one control patients also completed the A-FICQL. Nineteen completed bowel diaries. Of the 25, 9 completed a second administration of the survey. The mean correlation between repeated administrations of the survey was r = 0.43 which was consistent with moderate reliability. The Comparative Fit Index (CFI) was 0.910. Most items loaded significantly on their respective factors. Between-factor correlations were all significant (>0.30) in the predicted direction (positively correlated for items using the same Likert scale and negatively correlated for items with a reversed Likert scale). Unstandardized residuals (additional information the items in the survey carry that cannot be captured by the model) were equal to 11% [95% confidence interval: 9-13%]. Item reduction was performed on the 30-item instrument based on results of the factor analysis. The finalized instrument contained 14 items.
Conclusions:
The A-FICQL demonstrated adequate reliability with a moderate correlation. The 5-factor structure fit the data well; CFI values of >0.900 are indicative of proper fit. The unstandardized residuals were considered acceptable for a newly developed survey. The 14-item A-FICQL possesses desirable psychometric properties that make it attractive for measuring the impact of FI and constipation on quality of life in the SB population.