The Malone Antegrade Continence Enema Procedure: Quality of Life and Family Perspective

Abstract

No AccessJournal of UrologyPEDIATRIC UROLOGY1 Jan 2003The Malone Antegrade Continence Enema Procedure: Quality of Life and Family Perspective ELIZABETH B. YERKES, MARK P. CAIN, SHELLY KING, TIMOTHY BREI, MARTIN KAEFER, ANTHONY J. CASALE, and RICHARD C. RINK ELIZABETH B. YERKESELIZABETH B. YERKES More articles by this author , MARK P. CAINMARK P. CAIN Financial interest and/or other relationship with Aventis and Pharmacia. More articles by this author , SHELLY KINGSHELLY KING More articles by this author , TIMOTHY BREITIMOTHY BREI More articles by this author , MARTIN KAEFERMARTIN KAEFER Financial interest and/or other relationship with Alza and Pharmacia. More articles by this author , ANTHONY J. CASALEANTHONY J. CASALE Financial interest and/or other relationship with Aventis-Pasteur, Bayer and Pharmacia. More articles by this author , and RICHARD C. RINKRICHARD C. RINK Financial interest and/or other relationship with Bayer, Alza and Qmed. More articles by this author View All Author Informationhttps://doi.org/10.1016/S0022-5347(05)64116-XAboutFull TextPDF ToolsAdd to favoritesDownload CitationsTrack CitationsPermissionsReprints ShareFacebookLinked InTwitterEmail Abstract Purpose: Since introducing the Malone antegrade continence enema (MACE) procedure into our practice, it has been our bias that social confidence and independence are significantly improved and satisfaction is overwhelmingly high. We objectively determine outcomes after the MACE to refine patient selection, and maximize the quality of perioperative counseling and teaching. Materials and Methods: An anonymous questionnaire was mailed to all patients who had undergone the MACE procedure within the last 4 years. Patient/parent satisfaction, impact on quality of life and clinical outcome were assessed with Likert scales. Demographic information, MACE specifics, preoperative expectations, and unanticipated benefits and problems were also recorded. Results: A total of 65 questionnaires were returned from our first 92 patients (71%). Myelodysplasia was the primary diagnosis in 88% of patients. Complete or near complete fecal continence was achieved in 77% of patients and all others had improved incontinence. The highest level of satisfaction was reported by 89% of patients. Social confidence and hygiene were significantly improved. Daily time commitment, pain/cramping, intermittent constipation and time for fine-tuning the regimen were cited as unanticipated issues. Conclusions: The MACE procedure has received high praise from patients and families after years of battling constipation and fecal incontinence. Significant improvement rather than perfection is the realistic expectation. Objective feedback from patients and families will continue to improve patient selection and education. References 1 : Preliminary report: the antegrade continence enema. Lancet1990; 336: 1217. Crossref, Medline, Google Scholar 2 : The clinical application of the Malone antegrade colonic enema. J Pediatr Surg1993; 28: 1012. Crossref, Medline, Google Scholar 3 : The Malone antegrade continence enema for neurogenic and structural fecal incontinence and constipation. J Urol1995; 154: 759. Link, Google Scholar 4 : The Malone antegrade colonic enema enhances the quality of life in children undergoing urological incontinence procedures. J Urol1996; 155: 1416. Link, Google Scholar 5 : Continent appendicostomy in the bowel management of fecally incontinent children. J Pediatr Surg1997; 32: 1630. Crossref, Medline, Google Scholar 6 : Role of the antegrade continence enema in the management of the most debilitating childhood recto-urogenital anomalies. J Urol1997; 158: 1277. Link, Google Scholar 7 : The MACE procedure: experience in the United Kingdom. J Pediatr Surg1999; 34: 338. Crossref, Medline, Google Scholar 8 : In situ imbricated appendix: experience with simple MACE technique. J Urol1999; 161: 199. abstract 762. Crossref, Google Scholar 9 Yerkes, E.B., Rink, R.C., Cain, M.P., Casale, A.J