Success of Malone's Antegrade Continence Enema (MACE) from the Patients’ Perspective

Abstract

Purpose: Fecal incontinence (FI) is a devastating problem for children. The failure of optimal medical treatment may require further interventions such as appendicocutaneostomy. We report on a patients’ perspective of the success of a Malone procedure for FI.

Patients and Methods: The records of 32 patients who had undergone ACE procedure in the past 9 years were reviewed. Patients and families were contacted, and telephone inquiries were conducted to assess the overall success of the operation. The questionnaire covered the concerns of patients/families about the stoma, functional results and changes in the patients’ quality of life (QOL).

Results: The indications for ACE stomas were meningomyelocele in 17 patients, anorectal malformation in 8, Hirschsprung/NID in 3, spinal tumor in 3 and traumatic spinal injury in one. 7 laparoscopic and 25 conventional operations were performed. The vermiform appendix was used in 27 of the patients and a cecal flap was used in 5. The most frequent complication was stenosis of the stoma orifice observed in 14 patients. 8 patients responded to dilatations while 6 patients required minor surgical revision. There were 2 perforations during catheterization, and they required surgical repair of the conduit. 5 patients had mild leakage from the stoma; all 5 were open ACE procedures, and required revision. 25 patients could be reached by phone. 5 of these children stopped using the stoma due to previous perforation in 2 patients and stricture in 1. The remaining 2 stopped using their stomas because “they did not like the idea of it”. 16 patients are completely clean. 3 patients have occasional soiling. Only one patient was not satisfied with using the ACE stoma and stated that it did not sufficiently improve her condition. 8 patients complained about the duration of the enema (longer than 1 h); however, 5 of them refuse to use the stoma every day. All patients but one perceived a significant improvement in their QOL. Mean QOL scores before and after the procedure were 5.8 (2–9) and 11.5 (5–14), respectively.

Conclusions: ACE stomas provide a satisfactory improvement in patients’ quality of life. Stoma-related complications are not uncommon. The most common problems are strictures, followed by stoma leakage.

Key words

Malone - quality of life - patients’ perspective

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