J Pediatr Surg. 2021 Jun 5;60263.doi: 10.1016/j.jpedsurg.2021.04.025.Online ahead of print.

Irene Isabel P Lim ¹, Christopher C Cushing ², Todd Jenkins ³, Misty Troutt ³, Margaret H Zeller ⁴, Monir Hossain ⁵, Beth Rymeski ³, Michael Helmrath ³, Jason S Frischer ³

Author information

• ¹Cincinnati Children's Hospital Colorectal Center for Children, Cincinnati, OH, United States. Electronic address: ireneisabel.lim-beutel@cchmc.org.
• ²Clinical Child Psychology Program & Schiefelbusch Institute for Life Span Studies, University of Kansas, Lawrence, KS, United States.
• ³Cincinnati Children's Hospital Colorectal Center for Children, Cincinnati, OH, United States.
• ⁴Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.
• ⁵Cincinnati Children's Hospital Colorectal Center for Children, Cincinnati, OH, United States; Clinical Child Psychology Program & Schiefelbusch Institute for Life Span Studies, University of Kansas, Lawrence, KS, United States; Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, United States.

Abstract

Background: Severe fecal incontinence (FI) is common in patients both with and without anorectal malformations. Whether a formal bowel management program (BMP) has significant effects on FI, psychosocial development of the child, and caregiver stress is poorly understood. We hypothesize that BMP participation results in long-term clinical and quality of life (QOL) improvements for patients and caregivers.

Methods: Using a prospective cohort study over three years, 342 children (age 3-12 years) and caregivers were followed for one year after attending a week-long BMP, during which a regimen was tailored to promote daily stool evacuation.FI QOL was measured with the validated Cincinnati Fecal Incontinence Scale (CINCY-FIS), evaluating multiple subscales, including parental stress. Scores were obtained at multiple timepoints following BMP (baseline, 2 weeks, 3 months, 1 year).

Results: Within 2 weeks, BMP participation significantly improved FI with increased frequency of daily daytime voluntary bowel movements (20%-70%, p < 0.001) and decreased daily daytime and nighttimeinvoluntary bowel movements (60%-20%, p < 0.001; 30%-10%, p < 0.05). Marked improvements in CINCY-FIS were observed across multiple QOL subscales, with the greatest in parental stress, and sustained through one year.

Conclusions: BMP results in significant and sustained improvement in FI and QOL for patients and caregivers.