title: The Malone antegrade continence enema procedure: quality of life and family perspective.
abstract: OBJECTIVE
  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.
  
  
  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.
authors.affiliation: Department of Urology, Indiana University School of Medicine, Indianapolis, IN, USA.
authors.forename: Elizabeth B
authors.initials: EB
authors.lastname: Yerkes
authors.forename: Mark P
authors.initials: MP
authors.lastname: Cain
authors.forename: Shelly
authors.initials: S
authors.lastname: King
authors.forename: Timothy
authors.initials: T
authors.lastname: Brei
authors.forename: Martin
authors.initials: M
authors.lastname: Kaefer
authors.forename: Anthony J
authors.initials: AJ
authors.lastname: Casale
authors.forename: Richard C
authors.initials: RC
authors.lastname: Rink
mesh_terms: D000293:Adolescent; D000328:Adult; D001065:Appendix / Q000601:surgery; D002648:Child; D002675:Child, Preschool; D004733:Enema / Q000379:methods; D005190:Family; D005242:Fecal Incontinence / Q000209:etiology / Q000601:surgery*; D005260:Female; D006801:Humans; D008297:Male; D009436:Neural Tube Defects / Q000150:complications; D010290:Parents / Q000523:psychology; D010349:Patient Compliance; D017060:Patient Satisfaction; D011788:Quality of Life; D011795:Surveys and Questionnaires