Initial development and validation of a fecal incontinence-specific quality of life measure

Cushing CC1, Threlkeld MRS2, Martinez-Leo B2, Hall J2, Hossain M2, Dickie BH3, Rymeski B2, Helmrath M2, Zeller MH4, Frischer JS5. J Pediatr Surg. 2018 Jun;53(6):1148-1153. doi: 10.1016/j.jpedsurg.2018.02.076. Epub 2018 Mar 7.

Author information

1 Clinical Child Psychology Program, University of Kansas, Dole Human Development Center, Lawrence, KS.

2 Colorectal Center at Cincinnati Children's, Division of Pediatric General & Thoracic Surgery, Cincinnati, OH.

3 Department of Surgery, Boston Children's Hospital, Boston, MA.

4 Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.

5 Colorectal Center at Cincinnati Children's, Division of Pediatric General & Thoracic Surgery, Cincinnati, OH. Electronic address: Jason.Frischer@cchmc.org.


BACKGROUND/PURPOSE: Fecal incontinence is a prevalent pediatric condition with psychosocial impacts on both children and their caregivers. We sought to develop and validate the Cincinnati Fecal Incontinence Scale (CINCY-FIS) as a psychometrically valid measure to assess the quality of life and caregiver impacts of pediatric fecal incontinence.

METHODS: Items were generated through review of previous measures, expert consensus, and pilot testing with feedback from 8 families. Initial study measures were completed by 222 caregivers. Following item reduction, 18 items were subjected to confirmatory factor analysis. Convergent and criterion validity were assessed using correlation. Reliability was established using internal consistency statistics and test-retest reliability at baseline and 2-week follow-up.

RESULTS: A five factor first-order structure with two higher-order factors demonstrated acceptable fit to the data, was consistent with a priori hypotheses, and was more parsimonious than the alternative model. Convergent validity and criterion-related validity were established for all of the CINCY-FIS scales. Reliability was high and consistent across both measurement occasions.

CONCLUSIONS: The CINCY-FIS is a reliable and valid assessment of pediatric fecal incontinence-specific quality of life and parenting stress. The score is highly sensitive to patient changes making it suitable for both clinical and research purposes.

TYPE OF STUDY: Prospective observational.

LEVEL OF EVIDENCE: Study of Diagnostic Test Level II.

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