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

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  • THE 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

    From the Departments of Urology and Pediatrics, Indiana University School of Medicine, Indianapolis, Indiana

    ABSTRACT

    Purpose: Since introducing the Malone antegrade continence enema (MACE) procedure intoour practice, it has been our bias that social confidence and independence are significantlyimproved and satisfaction is overwhelmingly high. We objectively determine outcomes after theMACE to refine patient selection, and maximize the quality of perioperative counseling andteaching.

    Materials and Methods: An anonymous questionnaire was mailed to all patients who hadundergone the MACE procedure within the last 4 years. Patient/parent satisfaction, impact onquality of life and clinical outcome were assessed with Likert scales. Demographic information,MACE specifics, preoperative expectations, and unanticipated benefits and problems were alsorecorded.

    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 completefecal 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 andhygiene were significantly improved. Daily time commitment, pain/cramping, intermittentconstipation and time for fine-tuning the regimen were cited as unanticipated issues.

    Conclusions: The MACE procedure has received high praise from patients and families afteryears of battling constipation and fecal incontinence. Significant improvement rather thanperfection is the realistic expectation. Objective feedback from patients and families will continueto improve patient selection and education.

    KEY WORDS: fecal incontinence, quality of life, personal satisfaction, enema

    In 1990 Malone et al reported their initial experience withadministration of antegrade colonic enemas via the appen-dix.1 This principle has been applied to reduce fecal soilingand constipation in children with neuropathic fecal inconti-nence and anorectal malformations. Now more than 10 yearsafter the initial description of the Malone antegrade conti-nence enema (MACE), multiple groups have reported goodsuccess with these objectives.27 Ideally antegrade enemaswould allow patients to manage the bowel without the assis-tance of a caregiver, thereby improving their sense of inde-pendence and self-esteem.

    As we have gained experience with the MACE procedure atour institution, it has been our bias that the procedure hashad a significant impact not only on fecal continence, but alsoon quality of life for these patients. We have also observedthat the initial postoperative period during which the MACEregimen is optimized can be frustrating for patients andfamilies. In an effort to define outcomes objectively after theMACE procedure and to refine our perioperative counseling,we distributed an anonymous questionnaire to all patientswho underwent the procedure at our institution during thelast 4 years.

    MATERIALS AND METHODS

    An anonymous questionnaire was mailed to all patientswho underwent the MACE procedure between February1997 and January 2001. Likert scales were used to assessclinical outcome (continence and comparison to prior medicalmanagement), impact on social confidence and hygiene, im-pact on level of independence, general satisfaction, and will-ingness to commit to the procedure again or recommend it toa friend. Demographic information on the patient and familywas collected to investigate the hypothesis that socioeconom-ics and home environment may have an impact on successrate and level of satisfaction. Nonrated questions were alsoused to assess the degree of physical disability, prior experi-ence with medical bowel management, preoperative expecta-tions, quality of perioperative counseling and specifics of theMACE regimen. Responses were analyzed using SPSS 10.1.7for Windows (SPSS, Inc., Chicago, Illinois).

    RESULTS

    During the 4-year study period 92 patients underwent theMACE procedure at our institution by the technique previ-ously described,8, 9 and 65 (71%) returned the questionnaire.The mean age of the responders was 11.4 years (range 5 to30), and 58% were female. Of the patients 70% had beenusing the MACE for more than 12 months but 6% completedthe questionnaire within 3 months after the operation.Myelodysplasia was the primary diagnosis in 88% of pa-tients (table 1). Of the patients 28% were wheelchairbound, 38% used a wheelchair and ambulated with assis-tive devices, 16% used crutches and/or braces and theremaining 18% ambulated without assistance. Clean inter-

    Accepted for publication August 9, 2002.* Financial interest and/or other relationship with Aventis and

    Pharmacia. Financial interest and/or other relationship with Alza and

    Pharmacia. Financial interest and/or other relationship with Aventis-

    Pasteur, Bayer and Pharmacia. Financial interest and/or other relationship with Bayer, Alza and

    Qmed.

    0022-5347/03/1691-0320/0 Vol. 169, 320323, January 2003THE JOURNAL OF UROLOGY Printed in U.S.A.Copyright 2003 by AMERICAN UROLOGICAL ASSOCIATION DOI: 10.1097/01.ju.0000041721.26576.92

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  • mittent catheterization of the bladder was performed by94% of patients, 75% of whom did so through a separateabdominal wall stoma.

    Of the patients 82% live in a single family home. In 70% ofcases the primary caretaker was a student or employed out-side of the home. Despite evidence that 95% had private,federal or special insurance, only 45% thought that theirincome was sufficient to meet the medical needs of the pa-tient. Medical supplies were obtained largely at personalexpense by 26% of patients. More than 50% of the familieshad modified their bathrooms to accommodate the patient,and 5% had made toilet and hygiene arrangements outside ofthe family bathroom. Specific minor modifications mentionedfor the MACE included hooks and racks for the supplies, acushioned toilet seat and a small portable desk for home-work, reading material or games.

    In all patients dietary modifications and medical manage-ment of fecal incontinence and constipation had failed, in-cluding various combinations of laxatives, rectal stimulation,suppositories, enemas and timed toileting. These patientshad practiced consistent medical management for a mean of5.7 years (mean number of methods attempted 3.7). All re-sponses indicated that the MACE was superior to medicalmanagement, and 91% of respondents rated the MACE assignificantly better than medical management. Whenasked what had been most helpful before the MACE, mostwrote nothing. Timed toileting was the next most commonresponse. Suppositories, enemas and senekot were cited asleast helpful in the bowel management program.

    Tap water irrigations were performed daily in 77% of pa-tients (50 of 65), twice daily in 1 patient and every other dayin 11. The remainder performed irrigations less frequently.Only 19 patients (29%), ranging from 6 to 30 years old, werecompletely independent with the irrigations. Although otherpatients were gradually assuming responsibility, the proce-dure was performed entirely by a parent or other caregiver inapproximately 50% of cases. Despite our recommendation tocatheterize the stoma at least twice daily to reduce the risk ofstenosis, only 20% of patients reported actually doing sousing a 10Fr (28%) or 12Fr or larger (43%) catheter. Themean volume of tap water was 580 ml. (range 200 to 1,000).Time to complete the entire irrigation and washout was 20 to30 minutes in 22% of cases, 31 to 45 minutes in 35%, 46 to 60minutes in 38% and more than 1 hour in 5%. Several ques-tionnaires specifically noted that the child resented the timerequired to complete the process. There was no apparentrelationship between irrigation volume or catheter size andthe total time required to complete the irrigations.

    Complete or near complete fecal continence, defined as noincontinence episodes or an episode 1 to 2 times a year duringa viral illness, was achieved by 77% of patients. The other23% reported improved continence with the MACE. Of thewheelchair bound patients 83% (15 of 18) reported completecontinence versus only 30% (7 of 23) in the fully ambulatorygroup (chi square test p 0.002). When those with inconti-nence 1 to 2 times a year are included, however, the differ-ence in success rates (94% and 74%) is not statistically sig-nificant. Of the patients 12% continue to have incontinence 1or more times a week (table 2).

    A protective garment is worn daily either for continued

    fecal or urinary incontinence or as a security measure by 20%of patients. A protective garment is worn overnight by 9% ofpatients due to rectal leakage after evening irrigations, and11% report weekly leakage of a small amount of fluid perstoma with removal of the catheter only. Of the patients whoresponded to the questionnaire 14% (9 of 65) have requiredrevisions due to stenosis at skin level.

    MACE irrigations are the only consistent bowel manage-ment method required by 91% of patients. The other 9% useoral medications on a regular basis to help control constipa-tion and maximize the efficiency of colonic washouts. A totalof 18 patients had medications instilled through the MACEto address intermittent constipation including mineral oil in15 and GoLYTELY (Braintree Laboratories, Inc., Braintree,Massachusetts), Fleets (C. B. Fleet Co., Inc., Lynchburg,Virginia) and Miralax (Braintree Laboratories, Inc.) in 1 each.

    Satisfaction and quality of life questions were based on a5-point Likert scale. Responses for overall satisfaction werevery satisfied, satisfied and very dissatisfied in