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1.
J Pediatr Urol ; 19(4): 405.e1-405.e7, 2023 08.
Artículo en Inglés | MEDLINE | ID: mdl-37088620

RESUMEN

OBJECTIVE: While the Malone antegrade continence enema (MACE) facilitates bowel movements in patients with spina bifida (SB) and neuropathic bowel, little is known about its long-term use. We aimed to assess long-term MACE use and potential risk factors for disuse. METHODS: All patients with SB who underwent MACE procedures at our institution were retrospectively reviewed. Main outcome was MACE disuse (no longer catheterizing the MACE for antegrade enemas) based on self-report on a clinic questionnaire, or medical record for patients last seen before introducing the questionnaire 5 years ago. Survival analysis used two timeframes: time after surgery (Analysis 1) and chronological age: accounting for older children reaching adulthood earlier (Analysis 2). RESULTS: Overall, 411 patients (54% female, 78% shunted, 65% augmented) underwent a MACE procedure at median 7.9 years old (median follow-up: 8.4 years). Thirty-three (8%) patients no longer used their MACE. Most common reasons for doing so were channel/stomal stenosis (61%) and excision at colostomy or other abdominal surgery (12%). Bowel management afterwards included oral agents ± enemas (55%), Chait tube (30%), colostomy (12%). After correcting for differential follow-up, 90% of participants used their MACE at 10 years and 87% at 15 years after surgery. Based on chronological age, 97% used their MACE at 15 years old, 92% at 20 and 81% at 30 (Summary Figure). On multivariate analysis, umbilical MACEs were 2.4 times more likely to be disused than right lower quadrant MACEs (p = 0.04). Without correcting for chronological age (Analysis 1), patients undergoing MACE surgery at older ages were more likely to stop MACE use (p = 0.03). However, after accounting for chronological age (Analysis 2), patients undergoing a MACE procedure at older ages were no more likely to stop its use (p = 0.47, Figure). Gender, SB type, shunt status, mobility status, bladder augmentation or a urinary catheterizable channel were not associated with stopping MACE use (p ≥ 0.10). COMMENT: Participants were regularly followed in multi-disciplinary SB clinics. We did not assess continence, satisfaction or long-term urinary channel use, making it premature to recommend optimal stomal locations. CONCLUSIONS: Most patients with SB followed by a multi-disciplinary team continue using their MACE; 1% stopped MACE use annually, particularly after adolescence. This strongly suggests it is an effective bowel management method and transitioning to self-care plays a role in maintaining long-term MACE use. Umbilical MACEs may be at high risk of disuse, but all people with a MACE can benefit from support as they transition to adult care.


Asunto(s)
Incontinencia Fecal , Disrafia Espinal , Estomas Quirúrgicos , Niño , Adulto , Adolescente , Humanos , Femenino , Masculino , Estudios Retrospectivos , Incontinencia Fecal/etiología , Incontinencia Fecal/cirugía , Disrafia Espinal/complicaciones , Disrafia Espinal/cirugía , Enema/métodos
2.
J Pediatr Urol ; 19(2): 181-189, 2023 04.
Artículo en Inglés | MEDLINE | ID: mdl-36347777

RESUMEN

INTRODUCTION: Despite significant and known challenges to urinary and fecal incontinence (UI and FI, respectively) among children with spina bifida (SB) and their families, few studies have identified patient-centered measures and approaches to assessing them. This study represents the first stage of a larger study to develop a patient-centered goal-setting tool to guide incontinence management (Figure). Our aim was to understand patient experiences of UI and FI, and what goals should be included in the tool. METHODS: We used a qualitative research approach integrated with human-centered design methods. We recruited, in clinic and online, children with SB (8-17 years old) and parents (>=18 years old) of children with SB (8-17 years old). Online activities were analyzed by four experienced design researchers using affinity diagramming, group analysis and modeling activities (mind maps, challenge maps, experience maps). Recruitment and thematic qualitative analysis continued until saturation was reached. RESULTS: Seventeen children with SB participated (9 female, 12 shunted, 13 using bladder catheterizations, 6 using Malone antegrade continence enema, median age: 15 years old). Fifteen parents participated (13 mothers/2 fathers, median age: 42 years old), including six mother-child dyads. Five major themes each were identified for UI and FI experiences: (1) negative emotional impact of incontinence, (2) unpredictability of incontinence, (3) challenging/unpleasant incontinence management, (4) inconvenient/unreliable incontinence management, (5) UI management having unpleasant complications and FI putting much responsibility on parents. We identified six UI goal domains and five FI goal domains. Four overlapping domains included: accidents, independence, interruptions at school and social/friends. Unique domains were: urinary tract infections (UI), catheterizations (UI) and enemas (FI). COMMENT: Findings of our study improve our understanding of children's and parents' experiences associated with incontinence in SB and potential continence goals. CONCLUSIONS: Children with SB experience incontinence as distressing and unpredictable. Incontinence management can be challenging and unreliable. Patient-centered continence goals cluster in domains, indicating how incontinence intermeshes with other life areas and offering potential approaches to structure continence goals in a goals-selection tool.


Asunto(s)
Incontinencia Fecal , Disrafia Espinal , Sistema Urinario , Humanos , Femenino , Adolescente , Adulto , Niño , Incontinencia Fecal/etiología , Incontinencia Fecal/terapia , Padres , Disrafia Espinal/complicaciones , Disrafia Espinal/psicología , Madres
3.
J Pediatr Urol ; 17(4): 446.e1-446.e6, 2021 08.
Artículo en Inglés | MEDLINE | ID: mdl-33707132

RESUMEN

INTRODUCTION: Antegrade continence enemas have transformed treatment and improved the quality of life in children with neuropathic bowel, refractory constipation and fecal incontinence. However, it can often be difficult to manage problems that arise with ACE flushes. OBJECTIVE: We report the use of an online tool designed for nurses to help troubleshoot calls for problems associated with antegrade continence enema (ACE) flushes as well as update our algorithm for managing refractory constipation/fecal incontinence in a large single institution experience. STUDY DESIGN: We developed an online tool based on our management protocol for managing refractory constipation/fecal incontinence (Summary Figure). Patient frequency and bother was assessed prior to the intervention and at one month after the intervention using 5- and 4-point Likert scales respectively. Patient demographics, MACE/Chait information, type of difficulty, volume of flush, and use of additives were recorded. Nurses were also interviewed prior to using the tool and 14 months after its development with regards to taking these phone calls and the helpfulness of the tool. RESULTS: Over 14 months, the nurses received 22 patients calls via the nursing triage line regarding ACE flush problems and prospectively collected data. Half reported multiple episodes of fecal incontinence. Other complaints included no response to flush (8, 36.4%), occasional episodes of liquid fecal incontinence (2, 9.1%) and time of flush exceeding 60 min (1, 4.5%). While patients did not report decreased frequency of problems as a result of nurse troubleshooting using the ACE algorithm (2.5 vs. 2, p = 0.55), patients did report a significant improvement in their bother scores (4 vs. 2, p = 0.02). All but one patient reported that the recommendation was "some" or "a lot" helpful on follow up interview. The nurses all indicated that the tool helped "some" or "a lot." DISCUSSION: The antegrade continence enema is valuable in managing neurogenic bowel, refractory constipation, and fecal incontinence, however, some patients experience problems with flushes that can often be difficult to manage. CONCLUSION: Patients reported less bother with their bowel issues after using our algorithm for managing refractory constipation/fecal incontinence and nurses reported that the tool was helpful.


Asunto(s)
Incontinencia Fecal , Calidad de Vida , Algoritmos , Niño , Estreñimiento/terapia , Enema , Incontinencia Fecal/terapia , Humanos , Indiana , Estudios Retrospectivos , Resultado del Tratamiento , Universidades
4.
World J Urol ; 39(4): 1013-1019, 2021 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-32067073

RESUMEN

PURPOSE: To review existing literature about fertility and sexuality of boys born with complex congenital genitourinary anomalies. METHODS: A Pubmed review was performed in December 2018 to identify the most relevant original manuscripts regarding male complex congenital conditions affecting the urogenital system in male patients including spina bifida (SB), bladder exstrophy-epispadias complex (BEEC) and hypospadias. A comprehensive review was drafted exploring sexual dysfunction from a medical, psychosexual, surgical and reproductive point of view during transition from childhood (or adolescence) to adulthood. RESULTS: About 75% of men with SB have erectile dysfunction (ED) (Gamé et al. in Urology 67(3):566-570, 2006; Diamond et al. in 58(4):434-435, 1986). Most SB patients have impaired sexual development mainly due to diminished self-esteem, dependence on caregivers and lack of privacy (Blum et al. in Pediatrics 88(2):280-285, 1991). Men with BEEC have fewer intimate relationships than women because of the greater difficulties with issues regarding their genitalia and sexual activities (Deans et al. in Am J Obstet Gynecol 206(6):496.e1-496.e6, 2012). However, a good quality of life is achievable with the effective use of coping strategies (Deng et al. in Transl Androl Urol 7:941, 2018; Rikken et al. in BMC Womens Health 18(1):163, 2018; Friedler et al. in Reprod Biomed Online 32(1):54-61, 2016). Chordee occurs in 25% of all hypospadias patients. More severe hypospadias is related to a greater risk for complications. The long-term sexual quality of life (QoL) in men who underwent hypospadias surgery is influenced by a lot of factors. Therefore, an interactive and dynamic biopsychosocial model of sexual QoL was proposed. CONCLUSIONS: The care of patients with congenital urologic conditions becomes a challenge especially in the period of 'transition'. The goal of follow-up is a holistic management viewed from a medical, psychosexual, surgical end reproductive point. All patients should be asked for specific urinary, fecal or sexual concerns.


Asunto(s)
Infertilidad Masculina/etiología , Disfunciones Sexuales Fisiológicas/etiología , Anomalías Urogenitales/complicaciones , Extrofia de la Vejiga/complicaciones , Epispadias/complicaciones , Humanos , Hipospadias/complicaciones , Masculino , Disrafia Espinal/complicaciones
5.
J Pediatr Urol ; 14(1): 50.e1-50.e6, 2018 02.
Artículo en Inglés | MEDLINE | ID: mdl-28917602

RESUMEN

PURPOSE: The need for mechanical inpatient bowel preparation (IBP) in reconstructive pediatric urology has come under scrutiny, secondary to literature demonstrating little benefit regarding outcomes. Starting in 2013, a majority of patients undergoing reconstructive procedures at our institution no longer underwent IBP. We hypothesized that outpatient bowel preparation (OBP) would reduce length of stay (LOS) without increasing postoperative complications after appendicovesicostomy surgery. MATERIALS AND METHODS: An institutional database of patients undergoing lower urinary tract reconstruction between May 2010 and December 2014 was reviewed. Starting in 2013, a departmental decision was made to replace IBP with OBP. Patients undergoing an augmentation cystoplasty or continent ileovesicostomy were excluded because of insufficient numbers undergoing OBP. Patients undergoing IBP were admitted 1 day prior to surgery and received polyethylene glycol/electrolyte solution. A personalized preoperative OBP was introduced in 2013. Cost data were obtained from the Pediatric Health Information System. RESULTS: Sixty-seven patients met the inclusion criteria, with 30 (44.8%) undergoing IBP. There were no differences with respect to gender, age, presence of ventriculoperitoneal shunt, body mass index, glomerular filtration rate, preoperative diagnosis, operative time, and prior or simultaneous associated surgeries (p ≥ 0.07). Patients undergoing an IBP had a longer median LOS (7 vs. 5 days, p = 0.0002) and a higher median cost (US$4,288, p = 0.01). Postoperative complications in both groups were uncommon and were classified as Clavien-Dindo grade 1-2, with no statistical difference (IBP 20.0% vs. OBP 5.4%, p = 0.13). No serious postoperative complication occurred, such as a dehiscence, bowel obstruction, or shunt infection. DISCUSSION: This is the first analysis of hospitalization costs and IBP, showing a higher median cost of US$4288 compared with OBP. The LOS was shorter with an OBP (figure), similar to a previous report. Similar complication rates between the groups add to the growing body of literature that avoidance of IBP is safe in pediatric lower urinary tract reconstruction. Being a retrospective review of a practice change, differences in care that influenced cost and LOS may be missing. Also, as the surgeons do not know if a usable appendix is initially present, our data may not extrapolate to all patients. Despite these potential limitations, our data support the safety of utilizing OBP in patients with a high likelihood of a usable appendix, including those undergoing a synchronous Malone antegrade continence enema via a split-appendix technique. CONCLUSION: In patients undergoing an appendicovesicostomy, preoperative IBP led to longer LOS and higher costs of hospitalization. OBP was not associated with increased risks of postoperative complications.


Asunto(s)
Pacientes Internos/estadística & datos numéricos , Pacientes Ambulatorios/estadística & datos numéricos , Cuidados Preoperatorios/métodos , Irrigación Terapéutica/métodos , Vejiga Urinaria Neurogénica/cirugía , Procedimientos Quirúrgicos Urológicos/métodos , Adolescente , Apéndice/cirugía , Niño , Preescolar , Estudios de Cohortes , Bases de Datos Factuales , Femenino , Costos de Hospital , Humanos , Tiempo de Internación/economía , Masculino , Complicaciones Posoperatorias/epidemiología , Complicaciones Posoperatorias/fisiopatología , Estudios Retrospectivos , Medición de Riesgo , Resultado del Tratamiento , Vejiga Urinaria/cirugía , Derivación Urinaria/métodos , Procedimientos Quirúrgicos Urológicos/economía
6.
Urology ; 103: 261-271, 2017 May.
Artículo en Inglés | MEDLINE | ID: mdl-28163084

RESUMEN

Over the last 5 decades, health-care advances have yielded quantum improvements in the life expectancy of individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related health-care issues, whereas adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This paper outlines identified research needs.


Asunto(s)
Cuidado de Transición , Anomalías Urogenitales/terapia , Urología , Prestación Integrada de Atención de Salud/organización & administración , Humanos , National Institute of Diabetes and Digestive and Kidney Diseases (U.S.) , Mejoramiento de la Calidad , Investigación , Cuidado de Transición/organización & administración , Cuidado de Transición/normas , Estados Unidos , Urología/métodos , Urología/organización & administración
7.
J Pediatr Surg ; 48(10): 2134-9, 2013 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-24094969

RESUMEN

BACKGROUND/PURPOSE: The Malone antegrade continence enema (MACE) channel is an effective means to manage patients with neurogenic bowel; however, complications may occur that may require surgical revision. Specific reports of the outcomes of these interventions are limited. We describe our clinical results following revision of MACE. METHODS: We retrospectively identified patients undergoing MACE revision for at our institution between 1997 and 2009. Type of MACE (in situ appendicocecostomy (AC = 247), ileocecostomy (IC = 25), cecal flap (CF = 10)) performed was recorded, time from creation to revision, site of revision, and need for repeat surgical revision were recorded. RESULTS: Of a total of 282 patients that underwent creation of MACE during the study period, 49 patients (17%) required surgical revision. Of these 49 patients, 42 had undergone AC, four had IC and three had CF. Mean time from MACE creation to revision was 19 months. Sixty-eight revision procedures were performed in the 49 patients. Skin level or endoscopic procedures accounted for 52/67 (78%) procedures. Sixteen patients (33%) required more than one revision and three patients (6%) required more than two procedures. CONCLUSIONS: Skin level revisions accounted for over three-fourths of MACE revisions. In our series, two thirds of patients requiring revision required only a single procedure, but one third required more than one revision.


Asunto(s)
Enema/métodos , Enterostomía/métodos , Incontinencia Fecal/terapia , Adolescente , Adulto , Niño , Preescolar , Incontinencia Fecal/cirugía , Estudios de Seguimiento , Humanos , Reoperación/estadística & datos numéricos , Estudios Retrospectivos , Resultado del Tratamiento , Adulto Joven
8.
J Urol ; 184(4 Suppl): 1781-5, 2010 Oct.
Artículo en Inglés | MEDLINE | ID: mdl-20728137

RESUMEN

PURPOSE: We previously identified vitamin B(12) deficiency as a potential long-term consequence in pediatric patients with prior ileocystoplasty despite adequate preservation of terminal ileum. Vitamin B(12) deficiency can result in hematological and neurological deficits, of which some are irreversible. Deficiency discovered after ileocystoplasty is purportedly due to B(12) malabsorption since the principal absorption site is ileum. B(12) deficiency due to malabsorption is typically treated with intramuscular injection to ensure adequate treatment. We determined whether oral vitamin B(12) supplementation could increase serum vitamin B(12) in patients with deficiency who underwent ileocystoplasty. MATERIALS AND METHODS: During followup after ileocystoplasty we identified patients with low (200 pg/dl or less) or low normal (200 to 300 pg/dl) vitamin B(12). Oral vitamin B(12) was begun at 250 µg. Serum B(12) was assessed at 1, 2 and 3-month intervals after beginning therapy. RESULTS: A total of 128 patients with a mean followup of 83 months after ileocystoplasty had vitamin B(12) levels available for review. Of these patients 36 (28%) had a level of 300 pg/dl or less with a level of 200 pg/dl or less in 16 (13%). After oral vitamin B(12) treatment serum levels increased from a mean 235 to 506 pg/dl (114%) upon initial measurement (p <0.001). Subsequent measurements continued to increase from the first posttreatment level (p <0.05). No adverse effects were noted during a mean 4-month followup. CONCLUSIONS: To our knowledge this is the first study to show that oral vitamin B(12) effectively increases serum levels in pediatric patients with prior ileocystoplasty.


Asunto(s)
Íleon/trasplante , Vejiga Urinaria/cirugía , Deficiencia de Vitamina B 12/tratamiento farmacológico , Deficiencia de Vitamina B 12/etiología , Vitamina B 12/administración & dosificación , Complejo Vitamínico B/administración & dosificación , Administración Oral , Estudios de Seguimiento , Humanos , Procedimientos Quirúrgicos Urológicos/efectos adversos
9.
J Urol ; 179(4): 1544-7; discussion 1547-8, 2008 Apr.
Artículo en Inglés | MEDLINE | ID: mdl-18295265

RESUMEN

PURPOSE: Vitamin B12 deficiency is a feared complication of enterocystoplasty but it has never been demonstrated in pediatric patients who have undergone ileal enterocystoplasty. We reviewed our series of more than 500 bladder augmentations in an attempt to define the timing and risk of vitamin B12 deficiency in pediatric patients after bladder augmentation. MATERIALS AND METHODS: From October 2004 to present we obtained serum B12 values in patients who had undergone bladder augmentation at our institution. We looked at patients who had undergone ileal enterocystoplasty and who were 18 years or younger at the time of augmentation. Any B12 value that was obtained while on any form of B12 supplementation was excluded. These criteria resulted in 79 patients with 105 B12 values. B12 values of 200 pg/ml or less were considered "low," and values between 201 and 300 pg/ml were considered "low-normal." RESULTS: There was a statistically significant correlation between followup time and serum B12 (p = 0.0001). The probability of low B12 increased as followup time increased (p = 0.007), as did the probability of low-normal B12 (p = 0.005). Starting at 7 years postoperatively 6 of 29 patients (21%) had low B12 values, while 12 of 29 (41%) had low-normal values. CONCLUSIONS: Pediatric patients who have undergone ileal enterocystoplasty are at risk for development of vitamin B12 deficiency. These patients are at the highest risk beginning at 7 years postoperatively, and the risk increases with time. We recommend an annual serum B12 value in children beginning at 5 years following bladder augmentation.


Asunto(s)
Íleon/cirugía , Vejiga Urinaria/cirugía , Procedimientos Quirúrgicos Urológicos/efectos adversos , Deficiencia de Vitamina B 12/etiología , Adolescente , Anastomosis Quirúrgica , Niño , Preescolar , Humanos , Lactante , Procedimientos de Cirugía Plástica , Factores de Riesgo , Vejiga Urinaria/anomalías
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