Objective measurement of quality of life changes after ACE Malone using the FICQOL survey

PurposeThere is little objective data demonstrating improved quality of life after a Malone antegrade continence enema (ACE) despite the dramatic subjective improvements seen by physicians and caretakers.MethodsWe utilized the FICQOL survey, a reliable and valid instrument for measuring the impact of fecal incontinence and constipation on quality of life (FICQOL) of caregivers and children with spina bifida. Between 2002 and 2009, 23 families were evaluated prospectively before and after an ACE procedure. Items on the survey were compared with Wilcoxon rank sum or signed rank test.ResultsAfter an ACE Malone the mean number of bowel movements (BM) per day decreased along with a decrease in number of accidents per week from 3.9 to 0.3. There was no change in the time committed to bowel care. The percentage of patients taking oral laxatives decreased from 44% to 6%. Both parent and child were less often prevented from leaving the house and the caretakers’ bother, anxiety and depression due to bowel care decreased. Although factors regarding the child’s social issues and parent’s employment improved, the changes were not statistically significant.ConclusionsAmong patients with spina bifida and fecal incontinence who underwent the ACE procedure at our institution, a significant improvement in fecal incontinence and QOL scores was observed using a validated instrument, FICQOL. Without changing the amount of time necessary for bowel care, the ACE procedure decreases the families’ worries and anxieties and allows them to leave home with the confidence that their child will not have leakage of stool.