Barriers to healthcare transition for spina bifida patients: a systematic review.

OBJECTIVE: Patients with spina bifida (SB) were historically followed by pediatric providers throughout their entire lives. Through medical and surgical advancements, now more pediatric SB patients are living well into adulthood. Nonetheless, many patients fail to successfully transition to appropriate adult healthcare providers. The goal of this study was to identify factors that helped facilitate or hinder the successful transition of adolescent and young adult (AYA) SB patients to adult providers. METHODS: A systematic review was conducted exploring the transition care of SB patients using the PubMed, Embase, and Scopus databases. Titles and abstracts from articles identified were read and selected for full-text review. Studies meeting the inclusion criteria were reviewed in full and analyzed for study design, populations, interventions, and factors influencing transition. RESULTS: The primary search identified 2050 articles, of which 20 were included in the final review. Thirteen studies discussed factors relating to neurosurgical care, 8 referenced gastrointestinal and genitourinary considerations, 11 examined cognitive and psychosocial factors, and 17 explored healthcare system factors. Several barriers were consistently reported regarding communication, patient and parental attitudes and perceptions, and failure to embrace formalized and transparent protocols. Conflicting results were reported regarding the influence medical comorbidities had on a patient's ability to transition. CONCLUSIONS: The process of transitioning AYA SB patients to adult care is complex, involving an interplay of structural and psychosocial factors. The findings in this review suggest that some barriers can be alleviated with improved education, planning, and awareness of factors that influence transition care.

Navigating the transition: the crucial shift from pediatric to adult care for individuals living with spina bifida.

OBJECTIVE: Spina bifida (SB) is a complex congenital condition characterized by incomplete closure of the neural tube, resulting in varying degrees of physical and neurological impairment. Although commonly managed by multidisciplinary pediatric clinics, a substantial proportion of SB patients are now living into adulthood, necessitating the transition from pediatric to adult healthcare. This transition introduces a myriad of challenges for individuals living with SB and their families. Prior research on SB transition programs has demonstrated anecdotal success; however, minimal research has been published on early posttransition health outcomes and compliance with medical recommendations. This quality improvement study assessed early posttransition compliance with medical recommendations, adverse health events, access to medical supplies/equipment, and patient-reported health outcome and confidence in medical providers. METHODS: Adult participants in the Spina Bifida Transition Clinic at the authors' pediatric institution were invited to complete a telephone survey after transition to adult care. The mean (SEM) elapsed time since transition was 1.21 (0.11) years. The survey evaluated adult provider utilization, accessibility of medical supplies and equipment, adverse medical events, compliance with sleep study acquisition, patient-reported health status, and satisfaction with providers. RESULTS: Of 52 eligible participants, 49 (94%) completed a telephone survey. Within the cohort, 82% had open SB (myelomeningocele), with the remaining having occult SB (lipomyelomeningocele). The mean age at transition was 26.0 years. Since transition, 78% have attended at least one primary care visit, with 76% seeking care from at least one adult care specialist (69% sought care with urologists). Forty-five percent reported an adverse medical event: 31% required an emergency department visit, 22% were hospitalized, 18% underwent surgery, and 24% had skin breakdown. Access to medical supplies varied, with patients experiencing the most difficulty obtaining wheelchairs and assistive walking devices. Patients rated pediatric provider engagement and knowledge of SB significantly higher than adult providers (mean 3.92 vs 3.32, p < 0.001). CONCLUSIONS: This quality improvement study evaluated the effectiveness of our Spina Bifida Transition Clinic in the early post transition period. While patients have used primary and specialty care (urology), they have experienced many adverse events and low compliance with sleep study acquisition. Continued evaluation of transition programs is required to optimize the outcome of those living with SB.

Spina bifida transition care in India: strengths amidst challenges.

In India, adult neurosurgeons are required to care for children regularly because the concept of dedicated pediatric specialty care is not yet entirely established in the subcontinent. Likewise, pediatric neurosurgeons do not exclusively offer their services to the young, but they also provide care to adult patients with neurosurgical disorders. This creates a medical system where the transition between specialties is not often a formal and recognized aspect of neurosurgical care because most neurosurgeons provide care for patients of all ages. Additionally, there are very few teams geared toward caring for conditions in children that merit lifelong medical support, with spina bifida (SB) being one of them. Since there are no focused or structured pediatric programs on a large scale, developing a multidisciplinary clinic for adults becomes challenging. A pragmatic approach using technology-based education, supported by an organized system or a coordinator, may be a new strategy. A new system utilizing telemedicine and smartphones for established patients maybe an alternative option for SB children in India. During virtual video conferences, an established patient may benefit from multispecialty care and education toward a smooth transition that avoids significant issues with time, transportation, or financial constraints. Achieving a seamless transition among allied specialists from the pediatric to adult systems is a utopia. The current system in the subcontinent may be improved, with an opportunity to develop smooth transition care between coordinated specialists (who simultaneously treat children and adults). Learning from various global SB management styles, the Indian transition situation may offer another model in the near future.

The role of a dedicated transition process from pediatric to adult interdisciplinary care for persons with spina bifida.

OBJECTIVE: Interdisciplinary care and pediatric to adult transitional programs have consistently shown medical and social value for individuals with complex medical conditions such as spina bifida (SB). Such interdisciplinary clinics are common in pediatrics but are rarely offered for adults. This survey-based study reports information related to transition, daily pain burden, and satisfaction with care delivery in an adult SB clinic. METHODS: A 23-question survey that was based on empirical observations from the adult SB clinic was formulated, IRB approved, and distributed to adult patients. Many respondents had previously received care at the institution's pediatric SB clinic and completed transition to the adult program. Responses were de-identified, categorized, stored in a secure database, and statistically analyzed using SPSS. RESULTS: Of 245 patients approached, 116 (47%) surveys were completed and analyzed. Those who had a direct transition (defined as a less than 24-month gap in care) from the pediatric to the adult clinic comprised 44% (n = 51) of responders. The alternative group of 56% (n = 65) had a longer gap, disorganized or absent transition, or had pediatric care elsewhere. The study population had an average age of 36 years, had mostly received childhood care at the authors' institution, regardless of whether they made a direct transition or had a gap in care (68%), and held the diagnosis of open myelomeningocele (78%). Overall satisfaction with the clinic experience was high (mean score 9.04 on a 10-point subjective scale). Differences regarding independence in activities of daily living based on transition status were not significant, but on multivariate analysis, those who reported independence in activities of daily living had an almost 4-fold higher odds of daily pain (p = 0.024; OR 3.86, 95% CI 1.19-12.5). The most frequently identified areas for improvement included improved access to care and pain control. CONCLUSIONS: Pediatric transitional processes and interdisciplinary clinics may contribute to improved patient-perceived outcomes and satisfaction with their SB care in comprehensive settings. Further elucidation of barriers to pain control is warranted, in addition to ways in which comprehensive and longitudinal care can improve them.

Characteristics and Outcomes of Patients With Spina Bifida in Texas by Patient Age.

INTRODUCTION: Spina bifida (SB) occurs in 3.5/10,000 live births and is associated with significant long-term neurologic and urologic morbidity. We explored the characteristics and outcomes of pediatric patients with SB and the facilities that treat them in Texas. METHODS: We retrospectively reviewed a statewide hospital inpatient discharge database (2013-2021) to identify patients aged <18 y with SB using International Classification of Diseases 9/10 codes. Patients transferred to outside hospitals were excluded to avoid double-counting. Descriptive statistics and chi-square test were performed. RESULTS: Seven thousand five hundred thirty one inpatient hospitalizations with SB were analyzed. Most SB care is provided by a few facilities. Two facilities (1%) averaged >100 SB admissions per year (33% of patients), while 15 facilities (8%) treat 10-100 patients per year (51% of patients). Most facilities (145/193, 75%) average less than one patient per year. Infants tended to be sicker (17% extreme illness severity, P < 0.001). Overall mortality is low (1%), primarily occurring in the neonatal period (8%, P < 0.001). Most admissions are associated with surgical intervention, with 63% of encounters having operating room charges with an average cost of $25,786 ± 24,884. Admissions for spinal procedures were more common among infants, whereas admissions for genitourinary procedures were more common among older patients (P < 0.001). The average length of stay was 8 ± 16 d with infants having the longest length of stay (19 ± 33, P < 0.001). CONCLUSIONS: Patients have significant long-term health needs with evolving pediatric surgical indications as they grow. Pediatric SB care is primarily provided by a small number of facilities in Texas. Longitudinal care coordination of their multidisciplinary surgical care is needed to optimize patient care.

"Crafting a 'TransitionOmeter': A Proposed Framework for Developing and Honing Capabilities of Young People Transitioning to Adult Healthcare Services."

This paper focuses on an innovative approach to preparing children and young people, with Spina Bifida, to move from child-centered to adult-oriented healthcare systems. Reflecting on our role in delivering a national nurse led service, we set to identify and critique international transition tools in use for this population. Specifically, we aimed to identify the core capabilities and indicators of progression to successful transition, so that holistic interventions could be planned to match the needs of individuals and their carers. There were two phases to the study, initially focusing on a systematic literature review on transition tools and the specific items that these tools captured, including skills, abilities and behaviors. Phase two culminated in the articulation of a segmented and incremental "road map", aligned with facets deemed essential for a successful healthcare transition. The reporting of the literature review (phase one) followed the PRISMA guidelines and shaped the qualitative element of the study (phase two) through the use of semi-structured interviews and thematic analysis. The search strategy yielded 11 studies, which were then manually searched for other relevant literature, adding a further 14 articles. The review analyzed 7 specific tools for spina bifida and 8 generic tools, which were deemed appropriate for this group of patients. A comprehensive list of core capabilities was then articulated and framed to fit a progression timeline. Specific interventions were formulated to explore ways to co-produce resources that could enhance and support a planned transition to adult-focused services. Our proposed mapping of capabilities and progression could shape other transition programs, where nurses work collaboratively with young people, carers and other members of a team. More work is needed to further explore and embed the framework that, as we did, could be digitized and shared with all stakeholders involved in the transition process.

Getting to the bottom of why children with spina bifida use the emergency department: A qualitative analysis of parent and stakeholder perspectives.

BACKGROUND: Children with Spina Bifida (SB) have considerable healthcare utilization, including Emergency Department use (EDU). We aimed to elicit reasons for EDU using qualitative analysis of interviews with both patient-caregiver dyads and stakeholders. METHODS: A cohort of children with SB followed at our institution between 2016 and 2020 was identified and patient and clinical characteristics abstracted. Purposeful sampling by age and degree of past EDU was performed. Semi-structured interviews of dyads were performed using iteratively revised interview guides. Spanish-language interviews were conducted by a native Spanish speaker and transcripts professionally translated. Supplemental interviews with stakeholders, namely knowledgeable healthcare professionals, were also conducted. A qualitative framework approach was used for analysis, including open followed by closed independent coding with calculation of inter-rater reliability. A final interpretation of coding reports assessing convergence, divergence, and variation in themes across participant characteristics. RESULTS: 116 families (4 Spanish-speaking) and 7 stakeholders were interviewed. Sampling yielded a heterogenous cohort for EDU (56% with 0-10, 44% with >10 visits) and age (25% 0-4, 44% 5-11, 31% > 11 years). IRR was optimal (κ = 0.9). Themes in perceived reasons for EDU were 1) desire for "one-stop-shop" care, 2) an emergent medical problem, 3) providers' instructions, 4) negative past healthcare experience, 5) intrinsic caregiver moderators, and 6) temporospatial influences. Themes 1, 2, and 5 predominated in dyads, whereas themes 6, 3, and 5 were most common in stakeholders. Stakeholders focused largely on negative institutional and patient characteristics. Among dyads only, theme #1 was disproportionately emphasized by Spanish-speaking patients. DISCUSSION: Families desired access to coordinated expert care, testing and imaging. The ED offers this for children with SB, regardless of clinical acuity. This may be especially valued by families with inherent challenges to navigating the healthcare system. Negative experiences in community clinical settings, healthcare provider recommendations and intrinsic parental factors were themes that seemed to contribute to seeking this "one-stop-shop" type of care. Care coordination may reduce ED reliance, but themes for the interviews suggest a systems-based efforts should weave in the community care setting. CONCLUSIONS: For both stakeholders and caregivers, the ED represented a valued form of immediate access to multispecialty, expert care and testing in the context of perceived lack of timely, coordinated outpatient care. This may be moderated by intrinsic caregiver factors and negative past experiences. Although stakeholders discussed ideas that fit into patient-caregiver themes, the also uniquely focused on systems-based and patient-caregiver limitations.

Barriers to Transitional Care in Spina Bifida.

The health care needs children with spina bifida evolve over their lifetime; continued, regular contact with appropraitely trained, multidisciplinary providers is crucial to a patient's health and quality of life. Substantial research has been conducted to improve the transition process starting at an early age; however, there continue to be strong barriers to successful transition. This article reviews key aspects of the care of patients with spina bifida, the impact of inadequate transition to adult care, barriers to transition, and offers a potential vision for the future.

Trajectories of self-management and independence in youth with spina bifida: Family-related predictors of growth.

The purpose of this study was to assess family-related predictors of self-management trajectories in youth with spina bifida (SB). Participants with SB completed the Adolescent/Young Adult Self-Management and Independence Scale (AMIS II) interview across four time points. Family functioning, family-related stress, and perceived family support were assessed by multiple reporters and multiple methods. Growth in AMIS II total self-management and the AMIS II subscales (Condition and Independent Living) were estimated using linear mixed effect models as a function of family factors, after controlling for socio-demographic, condition-related, and neuropsychological variables that had been found to be significant predictors of self-management in prior studies. Model fit and parsimony were assessed using Akaike's information criterion (AIC). This diverse community sample included 99 respondents aged 18-27 years old. About half were female (52.5%) and White (52.5%); 15.2% were Black, and 32.3% were Hispanic/Latino. Observed family cohesion at baseline was associated with all self-management scales at age 18 (all p < 0.05). Growth in self-management was associated with parent-reported number of family stress events. For growth in total self-management, the best model included age, race/ethnicity, family income, shunt status, lesion level, neuropsychological function, observed family cohesion, and an age-by-number of family stress events interaction effect. The study findings suggested that family factors were important predictors of self-management trajectories, even after controlling for socio-demographic, condition-related, and neuropsychological covariates. Risk and protective factors identified in families of youth with SB can inform family-focused interventions for self-management.

The urological evaluation and management of neurogenic bladder in children and adolescents-what every pediatric nephrologist needs to know.

Neurogenic bladder (NGB) is an encompassing term that includes multiple causes of bladder dysfunction linked to a congenital or acquired neurological condition that adversely impacts the innervation of the lower urinary tract. Multiple static or progressive conditions can be associated with NGB in pediatric and adolescent patients. Currently, spinal dysraphism (i.e., spina bifida) is one of the most common etiologies, which occurs in 3-4 per 10,000 live births in developed nations. Abnormal bladder dynamics can lead to kidney damage secondary to high pressures or recurrent infections, as well as urinary incontinence. The current management paradigm centers on a proactive approach to preserving kidney function and achieving continence through behavioral, pharmacological, and surgical means. This educational review highlights the key components of urological management to maximize collaboration with pediatric nephrologists.

Multidisciplinary management of people with spina bifida across the lifespan.

The average worldwide prevalence of neural tube defects (NTDs) is 1.0 per 1000 births. Its development is multifactorial due to genetic and non-genetic factors. Spina bifida (SB) is one of main representatives of NTD. The spinal cord lesion level is the main determinant of the level of paralysis, numbness, and difficulties with bladder/bowel functions. Myelomeningocele prenatal repair reduces hydrocephalus and hindbrain herniation and improves motor function. The severity of hydrocephalus is associated with poorer neurodevelopmental outcomes whether operated on prenatally or after birth. People with SB tend to have a lower IQ and cognitive difficulties. Early diagnosis, proactivity, and lifelong multidisciplinary follow-up are key protective issues. Invasive urological interventions should be considered in selected patients after failure of conservative treatment. Transition to adult care should be well planned as it is challenging. Health literacy is directly associated with success at transition. Sexuality and fertility should be addressed before/during puberty. Overall, the rates of fecal and urinary continence and skin breakdown increase with age, whereas the ability to ambulate declines with age. Bowel and urinary incontinence are independent predictors of lower health-related quality of life (HRQoL) in adults with SB. Bowel incontinence has negative impact on HRQoL regardless of frequency or amount. Long-term caregiver support should be offered at diagnosis. Survival at a mean of 50 years is poor, at 32%, due to central nervous system deaths, cancer, urological disease, and sepsis. Challenges to implementation of recommended practices exist, especially in low and middle-income countries.

2023 updates to the spina bifida transition to adult care guidelines.

PURPOSE: This article provides an update to the 2018 Spina Bifida Association's Transition to Adult Care Guidelines. METHODS: A workgroup of topic experts was convened including authors from the initial guideline workgroup. The workgroup reviewed and updated the primary, secondary, and tertiary outcome goals, clinical questions, and guideline recommendations based on a literature review. RESULTS: Twenty-two additional articles were identified from the literature search. Updated references included observational studies describing transition to adult care outcomes, transition care model initiatives, and a validated self-management assessment tool. CONCLUSION: Structured transition initiatives increase the likelihood of establishing with adult care, decrease acute care use for young adults with spina bifida, and have the potential to improve quality of life and optimize chronic condition management. However, there is still a need to implement structure transition practices more broadly for this population using these recommended guidelines.

Importance of Regular Examination and Follow-up in Pediatric Patients with Neurogenic Bladder: 24-Month Follow-up Study Using a Japanese Health Insurance Database.

INTRODUCTION: Data on the long-term management of neurogenic bladder (NGB) are scarce. We evaluated the current status of NGB management in Japanese children over 24-month follow-up using the JMDC database. METHODS: In this descriptive, observational, retrospective cohort study, patients (≤ 17 years) with NGB were included. Patient characteristics and their management status were investigated. A multivariate analysis evaluating the potential risk factors for the development of urinary tract infection (UTI) was performed. The diagnosis of spina bifida, demographics, baseline comorbidities, and early use of clean intermittent catheterization (CIC) and/or overactive bladder (OAB) drugs were used as independent variables. RESULTS: Of 883 eligible children, 39.3% had spina bifida. Over 12/24-month post-index periods, renal urinary tract ultrasound and urinalysis were performed at least once in > 35%/> 45% patients, respectively, while specific tests (urodynamics, cystourethrography, scintigraphy) were performed in substantially fewer (< 11%/< 13%) patients. Over 24 months, 21.5% patients used OAB medications (mostly anticholinergics) and 10.8% underwent CIC, alone or with medications; 1.2% patients underwent surgery. Lower UTI (23.3%), urinary incontinence (9.7%), and hydronephrosis (7.0%) were the most common incident complications. Multivariate analysis evaluating risk factors for UTI showed significantly higher odds ratios with point estimates of ≥ 2 for CIC (5.70), presence of spina bifida (2.86), and constipation (2.07). Overall, urodynamic assessments were inadequately performed. CONCLUSION: Patients with use of CIC and/or having spina bifida and constipation had a higher risk of UTI, suggesting the need for careful follow-up. More guideline-compliant and diligent patient management is necessary in Japanese children with NGB.

Access and Utilization of Health Care by Adults with Spina Bifida.

OBJECTIVE: To contextualize the challenges that persons with congenital genitourinary conditions (CGC) may encounter in adulthood, we examined health care access, readiness for self-management, and health care utilization of adults with spina bifida (SB). METHODS: Through surveys distributed via social media, persons with SB were asked about access and barriers to care, readiness for self-management, and health care utilization (ie, medical visits, missed visits, emergency room [ER] visits, hospital admissions) within the past year. Multivariable models were fitted to examine determinants of utilization. RESULTS: Of the 270 eligible respondents (mean age 39), 24.5% had not received care from a urologist in the past year. The odds of missing any medical visits were increased among those with more prior urologic surgeries (odds ratio (OR) 1.35, 95%confidence interval (CI) 1.05-1.78) and those with ER visits for urologic condition within the past year (OR 2.65, 95%CI 1.22-6.01). Those with private insurance had lower odds of having ER visits for urologic condition (OR 0.46, 95%CI 0.22-0.84). The odds of hospital admission related to urologic condition were increased among female (OR 2.35, 95%CI 1.01-6.64), those with more prior urologic surgeries (OR 1.18, 95%CI 1.09-1.51), and those with a urologist (OR 2.98, 95%CI 1.15-14.47). CONCLUSION: A substantial proportion of adults with CGC lack routine urologic care. Considering the significant barriers to care and lapses in care, efforts to improve access and optimize health care services utilization for this population with high medical complexity are warranted.

The impact of a health care transition clinic on spina bifida condition management and transition planning.

BACKGROUND: To better serve the growing population of individuals with spina bifida (SB) living into adulthood, pediatric SB clinics have developed structured health care transition (HCT) supports for adolescents and young adults. Evaluating the impact of structured HCT on SB-related chronic condition outcomes and transition planning goals is needed to assess such interventions. OBJECTIVE: This study explored the impact of a SB HCT Clinic on SB-related chronic condition management outcomes (e.g., reported bowel and bladder regimens and presence of pressure injury) and transition planning goals (e.g., decision-making, insurance, and transportation). METHODS: A retrospective chart review was conducted of young adults with SB who did and did not participate in an SB HCT Clinic before establishing an adult clinic to compare SB-condition outcomes and HCT planning goals between groups. Associations between demographic and clinical variables and outcomes were also assessed. RESULTS: The HCT group (n = 68) was more likely to use a bowel regimen (P < 0.01) compared to the non-HCT group (n = 94). There were no differences regarding bladder regimens or incidence of pressure injuries. For HCT planning, the groups differed regarding decision-making supports (P = 0.01). Additionally, the HCT group was more likely to use self-transportation (P = 0.01) or Medicaid transportation (P < 0.01). CONCLUSION: This single-center HCT program improved the use of a bowel regimen at the time of transfer to adult care and impacted HCT planning regarding decision-making and transportation. These initial findings support the need for further development and assessment of HCT programs for this population.

Quality over quantity: How qualitative research informs and improves quantitative research.

We highlight five recent, high-quality, representative, qualitative articles about Spina Bifida and DSD care that contextualize their findings within the scope of a larger envisioned clinical project. Qualitative research is uniquely poised to address issues such as how to define treatment success and optimize fertility-related education and surgical experiences in DSD care. This approach is also well-suited to explore caregiver burden and financial toxicity in spina bifida care and identify areas for improvement. We encourage researchers to add a qualitative approach to their quantitative research to provide a more holistic, patient-centered view of their subject matter.

Multi-Institutional Review From the Pediatric Colorectal and Pelvic Learning Consortium of Minor Spinal Cord Dysraphism in the Setting of Anorectal Malformations: Diagnosis, Treatment, and Outcomes.

BACKGROUND/RATIONALE: Anorectal malformations (ARM) are associated with congenital anomalies of the spine, but the impact of a minor spinal cord dysraphism (mSCD) on fecal continence in the setting of ARM remains unclear. MATERIALS/METHODS: A retrospective review was performed utilizing data from the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC) registry. The patient cohort was reviewed for ARM type, mSCD screening/incidence/neurosurgical intervention and age-based BMP utilization. RESULTS: 987 patients with ARM were categorized into mild (38%), moderate (32%) or complex (19%). 694 (70%) had normal spinal (NS) status. 271 (27.5%) patients had mSCD. MRI alone (49%) was the most common screening test for mSCD. US screening had a positive predictive value of 86.3% and a negative predictive value of 67.1%. Surgical intervention rates for mSCD ranged between 13% and 77% at a median age of 0.6-5.2 years. 726 (73.6%) patients were prescribed BMP (74.4% NS, 77.5% mSCD). Laxatives were most utilized BMP in all groups <5yo. ≥5yo, enema utilization increased with ARM complexity independent of spine status (with or without neurosurgical intervention). Neurosurgical intervention did not affect BMP utilization at any age or with any ARM when mSCD was identified. CONCLUSIONS: MSCD influence on bowel function in the setting ARM remains unclear. No significant impact of mSCD was noted on ARM patient bowel management program utilization. Variability exists within PCPLC site with screening and intervention for mSCD in patients with ARM. Future studies with standardized care may be needed to elucidate the true impact of mSCD on long term patient outcomes in ARM patients. TYPE OF STUDY: Retrospective Comparative Study. LEVEL OF EVIDENCE: III.

Improving Bowel Management in Children With Spina Bifida.

OBJECTIVES: In individuals with spina bifida (SB), bowel incontinence is associated with lower quality of life and lower likelihood of employment. In an effort to maximize bowel continence in children and adolescents, we created a bowel management assessment and follow-up protocol in a multidisciplinary clinic. Here we report the results of this protocol using quality-improvement methodology. METHODS: Continence was defined as no unplanned bowel movements. Our protocol involved: (1) a standardized 4-item questionnaire about bowel continence and consistency; (2) if the patient was not achieving continence, an intervention starting with oral medication (stimulant and/or osmotic laxatives), and/or suppositories (glycerin or bisacodyl) followed by an escalation to trans-anal irrigation, or continence surgery; and (3) follow-up phone calls at regular intervals to monitor progress and make changes as needed. Results are summarized with descriptive statistics. RESULTS: We screened 178 eligible patients in the SB clinic. Eighty-eight agreed to participate in the bowel management program. Of those who did not participate, the majority (68/90, 76%) were already achieving continence with their bowel regimen. Of children in the program, most (68/88, 77%) had a diagnosis of meningomyelocoele. At 1 year, the proportion of patients who were bowel accident free improved to 46% (vs 22% initially, P = 0.0007). CONCLUSIONS: A standardized bowel management protocol, primarily the use of suppositories and trans-anal irrigation to achieve social continence, as well as frequent telephone follow-up, can reduce bowel incontinence in children and adolescents with SB.