Satisfaction after the Malone antegrade continence enema procedure in patients with spina bifida

Abstract

Study design: Retrospective chart review. Objective: To evaluate the clinical outcomes and factors influencing patient satisfaction with Malone antegrade continence enema (MACE) in patients with spina bifida. Setting: Japan. Methods: We performed retrospective analysis of 21 patients with spina bifida who underwent surgical creation of an MACE stoma. Clinical outcomes were evaluated by medical records, operative notes and mailed questionnaires. Patient satisfaction scores (SSs) were measured on a modified visual analog scale (VAS) from 1 to 10, and the factors influencing the SS were analyzed. Results: A 100% return rate for the mailed questionnaires was achieved. All patients underwent in situ appendicocecostomy with cecal plication. There was only one complication that required surgical revision. Regarding fecal continence, the overall success rate was 90%. Although 4 patients (19%) had severe irrigation pain and 4 patients (19%) found the washout time intolerably long, 18 (85%) of them were satisfied with the MACE procedure. Age at operation, experience of retrograde colonic enema (RCE), experience of stomal leakage, increased comfort at school or workplace and increased comfort at sleepovers significantly influenced SSs. Conclusion: MACE is a valuable option in achieving fecal continence in patients with spina bifida, with most patients being satisfied with the procedure. In our analysis, younger age at operation, previous experience of RCE, no stomal leakage and improvement of quality of life (enhanced comfort at school, workplace and sleepovers) significantly influenced the high satisfaction after MACE. Spinal Cord (2014) 52, 54-57; doi:10.1038/sc.2013.111; published online 1 October 2013Keywords: Malone antegrade continence enema; quality of life; patient satisfaction; fecal incontinence; spina bifida INTRODUCTIONThe Malone antegrade continence enema (MACE) procedure, which was first described in 1990 by Malone et al., 1 has revolutionized the management and improved the quality of life (QOL) of patients with spina bifida who suffer from refractory constipation and fecal incontinence. However, it has been reported in a long-term followup study that a considerable number of patients have ceased the MACE procedure. 2 To select good candidates for the MACE procedure among patients with spina bifida, it is important to evaluate not only the status of the bowel, but also the overall patient satisfaction after the procedure. The aim of this study was to evaluate the factors that influence overall satisfaction after the MACE procedure in patients with spina bifida.

Variation in surgical management of neurogenic bowel among centers participating in National Spina Bifida Patient Registry

“…Compared to incontinent procedures and to medically managed constipation, these procedures have been reported to significantly increase satisfaction and quality of life measures among SB patients [17,18]. Therefore, it is not surprising ACE/cecostomy procedures were much more frequently performed than incontinent procedures.…”

Der querschnittgelähmte Patient – Besonderheiten der viszeralchirurgischen Diagnostik und Therapie

“…Ein Therapieansatz, ursprünglich für Kinder mit Spina bifida entwickelt, stellen anterograde Irrigationen („antergrade continent enema“, ACE) dar [ 25 , 41 , 49 ]. Entweder kann diese per endoskopisch eingebrachter perkutaner Zökostomie oder chirurgisch angelegter Stomata erfolgen [ 8 , 20 ].…”

Absence of the appendix discovered during childhood

“…During the intervals of enema administration the colon is empty and thus the child kept from being constipated or having episodes of fecal soiling/incontinence. Since its introduction in 1980 (Malone et al 1980) this procedure- the Malone or MACE (Malone antegrade continence enema) has undergone many modifications and is now widely used in the management of refractory constipation and fecal incontinence in children with myelomeningoceles, neuropathic conditions for example spina bifida, anorectal malformations, Hirschsprung’s disease and chronic intractable constipation (Imai et al 2014; Hoekstra et al 2011; VanderBrink et al 2013). …”