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Who is still using their MACE after 10 years of follow-up?
Joshua D. Roth, M.D., Benjamin Whittam, M.D., Konrad Szymanski, M.D., Alison Keenan, M.D., Christian Tabib, Medical Stuent, Kate Hubert, M.D., Rosalia Misseri, M.D., Martin Kaefer, M.D., Richard Rink, M.D., Mark Cain, M.D..
Indiana University, Indianapolis, IN, USA.

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.


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