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BACKGROUND:
Little evidence exists regarding how many patients continue to use their Malone antegrade continence enema (MACE) at long-term follow-up. We hypothesized that a majority of patients continue to use their MACE to achieve fecal continence even at greater than 10 years of follow-up.
METHODS:
A retrospective chart review was performed for all patients who underwent an appendicocecostomy and had at least 10 years of follow-up. We excluded patients who were over 21 years of age at the time of surgery. Patient demographics, MACE usage, MACE volume, stomal location, subfascial or stomal/skin level revisions, and indications for revision were reviewed. Our primary outcome was continued use of MACE in patients with greater than 10 years of follow-up.
RESULTS:
Of the 153 patients who had a MACE procedure performed at our institution over 10 years ago, 90 had sufficient long-term follow-up. Mean follow-up was 12.2 years (range 10.0 - 17.2 years) with an average age at initial procedure of 8.2 years (range 2.9 - 20.5 years). 78 of 90 patients (86.7%) continue to use their MACE. Of the remaining 12 patients, 4 abandoned their MACE (4.4%), 2 converted to percutaneous cecostomy tubes (2.2%), 2 converted to colostomy (2.2%), and use of the MACE could not be determined in 4 (4.4%). Mean MACE flush volume at last follow-up was 783 ml. Overall, 15 patients (16.7%) required at least one revision, with 2 (2.2%) undergoing a subfascial revision, 12 (13.3%) having stomal/skin level revisions and 1 (1.1%) requiring both a subfascial and a stomal/skin revision (1.1%). In addition, 3 patients (3.3%) required a second revision, with 1 patient (1.1%) requiring a subfascial revision, 1 patient (1.1%) needing a stomal/skin revision, and 1 (1.1%) requiring both a subfascial and a stomal/skin level revision.
Notably, 63 patients were lost to follow up within 10 years of having their MACE and thus had insufficient follow-up to include in final analysis. To account for possible selection bias and provide a more realistic assessment of long term MACE use, worst-case and best-case scenarios were calculated. Assuming either none (0/63) or all (63/63) of the 63 patients with insufficient follow-up use their MACE after 10 years, 51.0 - 92.2% of the overall cohort continues to use their MACE after 10 years.
CONCLUSIONS:
In a large cohort of MACE patients with long-term follow-up, we demonstrate that the vast majority continues to use their MACE a decade after initial surgery.