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 PERSPECTIVEELIZABETH B. YERKES, MARK P. CAIN,* SHELLY KING, TIMOTHY BREI, MARTIN KAEFER,ANTHONY J. CASALE AND RICHARD C. RINKFrom the Departments of Urology and Pediatrics, Indiana University School of Medicine, Indianapolis, IndianaABSTRACTPurpose: 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, enemaIn 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 METHODSAn 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).RESULTSDuring 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 andPharmacia. Financial interest and/or other relationship with Alza andPharmacia. Financial interest and/or other relationship with Aventis-Pasteur, Bayer and Pharmacia. Financial interest and/or other relationship with Bayer, Alza andQmed.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.0000041721.26576.92320mittent 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 continuedfecal 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 89%, 9% and1.5% (1 patient), respectively. The highest level of satisfac-tion was reported by 94% of wheelchair bound and 91% ofambulatory patients. Of the group 88% would definitely havethe procedure again or recommend it to a friend, 11% wouldprobably recommend it and 1 patient definitely would notrecommend the MACE. The perceived impact on social con-fidence and personal hygiene is described in figure 1. Socialconfidence and hygiene were significantly better for wheel-chair bound and ambulatory patients (94% and 87%, respec-tively, chi square test p 0.29). Responses regarding theimpact on level of independence were only accepted from the29% of patients who were performing the irrigations inde-pendently (fig. 2).Preoperative expectations by the patient and parents weremet completely in 94%. Looking back at the perioperativeexperience, 86% of responders thought that they understoodand were well prepared for surgery and daily postoperativecare. Issues that the remaining patients did not recall dis-cussing or wished they had known more about are listed intable 3.TABLE 1. Primary diagnosis of respondersNo. Pts.Myelodysplasia 57Imperforate anus 1Myelodysplasia and imperforate anus 3Tethered cord 1Paraplegia 1Renal failure/transplant 1Developmental delay/intractable constipation 1TABLE 2. Patients with persistent weekly incontinenceNo. Pts. (%)Total 8Age 5 yrs. at surgery 3 (38)Less than 6 mos. postop. 4 (50)Wheelchair bound 0 (0)Fully ambulatory 3 (38)Require oral medications for constipation 4 (50)Very satisfied with MACE 5 (63)Definitely would recommend to friend 5 (63)Impact on hygiene and social confidence:Significantly better 3 (38)Better 4 (50)No change 1 (12)FIG. 1. Quality of life impact on social confidence and personalhygiene.OUTCOMES AND SATISFACTION AFTER MACE PROCEDURE 321DISCUSSIONUse of antegrade colonic washouts for fecal continence, asinitially described by Malone et al in 1990,1 has been animportant addition to the care of children with neuropathicand structural abnormalities of the colon and sphincter.Several series have reported improved fecal continence inchildren and adults.27 A positive impact on quality of life forthese patients has been reported by several groups.2, 4, 5Others have attempted to address systematically quality oflife in patients who are routinely using antegrade continenceenemas. Shankar et al calculated a technical score and qual-ity of life score from a questionnaire completed by the patientand parent.10 The technical score included the extent of per-sistent soiling and time to complete washouts. Quality of lifewas based on child perception of MACE effectiveness for fecalsoiling. Toogood et al used an impartial interviewer and thesame scoring system.11 Quality of life was based on the over-all improvement in quality of life rather than a specific pa-rameter. Bau et al interviewed 19 patients treated with theMACE procedure and focused on stomal satisfaction as theprimary quality of life parameter.12 In addition they ad-dressed overall impact on quality of life, and the incidence ofclinical depression and depressive moods in the postoperativeperiod.In our study anonymous questionnaires were distributedand collected by mail in an effort to get the most candidresponses from the patient and family. However, by virtue ofthis method our study is subject to several limitations. A 71%return rate for mailed questionnaires is respectable but with-out actively violating the confidentiality of the responses weare unable to obtain input from the remaining 29%. If all ofthose who did not return the questionnaire were considereddropouts, the dropout rate would be considerably higher thanthat reported in other series (7.5% to 11%).10, 1214 Except for1 child who moved all of our patients are seen at the clinic ona regular basis and are still using the MACE.Given the number of school-age children in our series, weassume that the parent completed the questionnaire in manycases. Therefore, their content may reflect the sentiments ofthe parent rather than the patient. Certainly these view-points can differ at times, but the parent is in an excellentposition to determine whether achieving fecal continence hasbeen beneficial for the child. Due to the social implications offecal incontinence, the MACE procedure actually has an im-pact on the quality of life of the patient and the parents.According to the clinical experience of Curry et al, initia-tion of antegrade colonic enemas in children younger than 5years is met with a 70% failure rate.15 They reported a 24%failure rate in children 5 years old or older, and proposed thatyounger children may accept the irrigations poorly if they donot perceive fecal incontinence as a problem. On the otherhand, many young patients appreciate the freedom of wear-ing regular underpants and going to sleepovers without thefear of fecal soiling. We recognize that the parents of youngerchildren must be committed to the daily irrigations and an-ticipate some resistance from the child. Our series includedonly 1 patient younger than 5 years. When divided intoschool-age (5 to 9 years), adolescent (10 to 17) and adult (18and older) patients, there was no statistically significantdifference in continence rates. A trend toward inferior conti-nence was observed in the small adult group (60% conti-nence, 5 patients). Acceptance of the MACE in our series maybe different from that in those series with a larger percentageof patients with anorectal malformation. Nearly all of ourpatients require clean intermittent catheterization and themajority do so through an abdominal stoma, which may be animportant factor, as catheterizations are ingrained in dailylife.Several questionnaires indicated that the child is opposedto the time required to complete the irrigations. Althoughthis is not particularly surprising from our younger patients,any modification that shortens the procedure or makes thetime pass more quickly should be considered. Slow washoutmay be a significant problem in patients with megacolonsecondary to long-standing severe constipation. It is unclearwhether antegrade evacuation will lead to some reduction inthis dilatation with time. The left Monti-Malone, as de-scribed by Liloku et al,16 may significantly decrease the timerequired for enema administration and washout, and therebyincrease patient satisfaction and compliance. Their serieswas small but early results suggested consistently shorterwashout times and favorable continence rates with evacua-tion of the descending colon only.We have been fortunate to have steadfast families, asevidenced by the number who modified the bathroom to makethe irrigation time more efficient and pleasant. Our familiesmaintain a high level of satisfaction with the MACE despitesubjectively inadequate financial resources and supplies pur-chased out-of-pocket. Catheters and enema bags are the onlymaterials required for antegrade tap water irrigations. TheMACE may actually decrease the financial burden on fami-lies by reducing the need for hygiene garments and otherbowel regimen supplies.Shankar et al reported that wheelchair bound patientshave a poorer outcome in continence and quality of life scoreafter the MACE procedure.10 They emphasized the impor-tance of intact anorectal squeeze pressure for success withantegrade continence enemas. With a primary diagnosis ofanorectal malformation or Hirschsprungs disease in 70%,most patients in the series of Toogood et al were likely am-bulatory.11 Of their 10 patients 9 (90%) rated quality of lifeafter the MACE as ideal. In our experience wheelchair-bound patients do not have a worse outcome than ambulatorypatients. We found no statistically significant difference inpercentage of continent patients, level of satisfaction or theperceived impact on hygiene and social confidence.Due to the large percentage of positive responses from ourpatients and families, it is not possible to stratify the patientsFIG. 2. Quality of life impact on level of independence. Responsesaccepted only from those performing irrigations without assistance.TABLE 3. Issues incompletely covered in perioperative counselingand teachingNo. Pts.Pain* 4Need for bowel prep./nothing by mouth 2Time to fine-tune regimen 3Daily time commitment for irrigations 2Colonic spasms 1Character of rectal effluent 1Felt procedure was minimized 1* Responders did not state whether pain was postoperative, related to cath-eter insertion or related to irrigations.OUTCOMES AND SATISFACTION AFTER MACE PROCEDURE322to determine definitively which patient variables have animpact on quality of life after the MACE. Fewer patients withpersistent weekly incontinence reported high satisfaction(63%). In this subgroup hygiene and social confidence weresignificantly better or better in 38% and 50%, respectively.Our only patient who reported dissatisfaction with theMACE was a teenage female who had neuropathic bladderand bowel after resection of a lipoma and multiple tetheredcord releases. In addition to fecal incontinence she suffersfrom severe constipation. She has chronic back pain and isnarcotic-dependent, which likely has an impact on the sever-ity of the constipation and efficiency of colonic transit andenema washout. The parents report some improvement inbowel management but certainly not to the extent they hadanticipated.While the MACE clearly has a positive impact on socialconfidence and hygiene, its impact on the level of indepen-dence cannot be determined from our current experience.Responses accepted as part of this study would suggest thatindependence is less significantly affected than social con-fidence and hygiene. This finding may be a reflection of theoverall limit on independence imposed by physical disabilities,although the other social benefits of the MACE should notbe denied based on this factor. As our patients age andmore assume full responsibility for the enemas, we willgain more insight into this important issue.CONCLUSIONSThe MACE procedure provides a high success rate andhigh level of satisfaction in patients with neuropathic fecalincontinence refractory to medical management. While ante-grade continence enemas are beneficial for many, the pa-tients and parents must be extensively counseled regard-ing reasonable expectations perioperatively and for thelong term. The most useful lesson we have learned is thatthe MACE is not a magical solution for fecal incontinence.Significant improvement rather than perfection is the ap-propriate expectation. Patients and parents should beaware of the spectrum of results, need for a potentiallylengthy fine-tuning period, daily time commitment andpossibility of intermittent constipation despite consistentMACE use. Significant improvement in fecal continenceand social confidence is the reward for persistence.With careful patient selection, the MACE procedure issuccessful in the management of neuropathic and structuralfecal incontinence. It has a positive social impact for thesepatients, and the families are satisfied with this improve-ment over medical bowel management. Its impact on level ofindependence will become clearer as the patient group ages.Thorough perioperative counseling is an essential element inpatient selection and preparation. Further objective followupwith our patients and families will continue to improve thequality of our perioperative teaching.REFERENCES1. Malone, P. S., Ransley, P. G. and Kiely, E. M.: Preliminaryreport: the antegrade continence enema. Lancet, 336: 1217,19902. Squire, R., Kiely, E. M., Carr, B., Ransley, P. G. and Duffy, P. G.:The clinical application of the Malone antegrade colonic en-ema. J Pediatr Surg, 28: 1012, 19933. Koyle, M. A., Kaji, D. M., Duque, M., Wild, J. and Galansky,S. H.: The Malone antegrade continence enema for neurogenicand structural fecal incontinence and constipation. J Urol,154: 759, 19954. Ellsworth, P. I., Webb, H. W., Crump, J. M., Barraza, M. A.,Stevens, P. S. and Mesrobian, H. G.: The Malone antegradecolonic enema enhances the quality of life in children under-going urological incontinence procedures. J Urol, 155: 1416,19965. Levitt, M. A., Soffer, S. Z. and Pena, A.: Continent appendicos-tomy in the bowel management of fecally incontinent children.J Pediatr Surg, 32: 1630, 19976. Sheldon, C. A., Minevich, E., Wacksman, J. and Lewis, A. G.:Role of the antegrade continence enema in the management ofthe most debilitating childhood recto-urogenital anomalies.J Urol, 158: 1277, 19977. Curry, J. I., Osborne, A. and Malone, P. S.: The MACE proce-dure: experience in the United Kingdom. J Pediatr Surg, 34:338, 19998. Rink, R. C., Casale, A. J., Cain, M. P. and King, S. J.: In situimbricated appendix: experience with simple MACE tech-nique. J Urol, suppl., 161: 199, abstract 762, 19999. Yerkes, E. B., Rink, R. C., Cain, M. P. and Casale, A. J.: Use ofa Monti channel for administration of antegrade continenceenemas (Monti-MACE). Amer Acad Pediatr, Section onUrology, abstract 131, October 200110. Shankar, K. R., Losty, P. D., Kenny, S. E., Booth, J. M., Turnock,R. R., Lamont, G. L. et al: Functional results following theantegrade continence enema procedure. Br J Surg, 85: 980,199811. Toogood, G. J., Bryant, P. A. and Dudley, N. E.: Control of faecalincontinence using the Malone antegrade continence enemaprocedure: a critical appraisal. Pediatr Surg Int, 10: 37, 199512. Bau, M. O., Younes, S., Aupy, A., Bernuy, M., Rouffet, M. J.,Yepremian, D. et al: The Malone antegrade colonic enemaisolated or associated with urological incontinence procedures:evaluation from patient point of view. J Urol, 165: 2399, 200113. Hensle, T. W., Reiley, E. A. and Chang, D. I.: The Maloneantegrade continence enema procedure in the management ofpatients with spina bifida. J Am Coll Surg, 186: 669, 199814. Wilcox, D. T. and Kiely, E. M.: The Malone (antegrade colonicenema) procedure: early experience. J Pediatr Surg, 33: 204,199815. Curry, J. I., Osborne, A. and Malone, P. S.: How to achieve asuccessful Malone antegrade continence enema. J PediatrSurg, 33: 138, 199816. Liloku, R. B., Mure, P. Y., Braga, L., Basset, T. and Mouriquand,P. D.: The left Monti-Malone procedure: preliminary results inseven cases. J Pediatr Surg, 37: 228, 2002OUTCOMES AND SATISFACTION AFTER MACE PROCEDURE 323THE MALONE ANTEGRADE CONTINENCE ENEMA PROCEDURE: QUALITY OF LIFE AND FAMILY PERSPECTIVEMATERIALS AND METHODSRESULTSDISCUSSIONCONCLUSIONSREFERENCES

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