Who is managing the bowels? A survey of clinical practice patterns in spina bifida clinics

1 Introduction

Spina bifida is the most common permanently disabling congenital defect affecting multiple organ systems that is compatible with life. Neurogenic bowel dysfunction (NBD) is present in 80% of individuals with spina bifida [1]. NBD is caused by maldevelopment of the nerves necessary for bowel function and control, resulting in constipation and/or fecal incontinence. Those with spina bifida can have a variety of other related health conditions including urinary incontinence, urinary tract infections, ventriculoperitoneal shunt malfunction, skin breakdown, hemorrhoids, anal fissures [2–8]. NBD has significant effects on quality of life including decreased school attendance and increased rates of depression along with discrimination by peers in children and adolescents [9]. Worrying about fecal continence contributes to emotional, physical, and psychological distress [10]. Fecal incontinence secondary to NBD in those with spina bifida is associated with lower educational attainment and lower rates of employment in adults [11].

Multi-disciplinary clinics are a common practice model used to care for individuals with spina bifida. These clinics have a combination of neurosurgeons, urologists, orthopedists, developmental pediatricians, and rehabilitation medicine physicians. They also have nursing, physical therapy, occupational therapy, nutrition, and social work staff. Interestingly, gastroenterologists rarely participate in these clinics despite the high prevalence of NBD. Some conditions associated with spina bifida are treated by specialists in a single specialty while others are cross-disciplinary. The education and training of a provider managing NBD, as well as their primary specialty, depends largely on the clinic’s staffing structure.

Currently there is no standard protocol for management of NBD. The Spina Bifida Association (SBA) has provided some guidelines for management which have also highlighted gaps in the field [12]. Given the variability in the training and expertise of the healthcare providers managing NBD, it has been difficult to create a consensus group that could generate a management protocol. A PubMed literature search for peer-reviewed publications on NBD in spina bifida from the past 5 years revealed that relevant articles were inconsistently published across seven different disciplines. The aim of this study was to characterize which specialists are providing NBD care at spina bifida clinics in the United States. This knowledge will allow collaboration with the appropriate care providers to improve care for those with NBD by centralizing best practice patterns and disseminating information to the correct individuals.

2 Methods

An electronic survey was created on Survey Monkey^® (Survey Monkey Inc, San Mateo, CA, USA) querying which clinical specialty was primarily responsible for the management of NBD and if other specialties assist in this management. The type of provider (physician, nurse practitioner, physician assistant, or nurse) primarily responsible for care and others that assist was also collected. The type of surgeon performing bowel surgery, if advised, was noted. Questions were directed to the clinic managers or medical directors of the clinic who had the best understanding of the roles and responsibilities of the providers operating within the clinic. The responders could only select one type of provider and one clinic specialty to be the primary one responsible for care and management of neurogenic bowel.

The SBA is the only non-profit health agency committed to improving the care and lives of people with spina bifida. The SBA keeps an updated registry of multi-disciplinary clinics that offer care to individuals with spina bifida in the United States. The survey was distributed via email to all clinic directors/managers of SBA-registered spina bifida clinics. Reminder emails were sent to each clinic contact once before closure of the survey. Descriptive statistics were carried out for all questions using RStudio (2018, Boston, MA).

3 Results

A total of 51 spina bifida clinics responded out of 75 contacted (68% response rate), and all reported that their clinics did provide bowel management to their patients. A total of 28 states were represented in the responses.

Forty-one percent of clinics reported that urology specialists were primarily responsible for managing NBD in spina bifida patients (Table 1). Pediatric rehabilitation medicine, developmental pediatrics, and gastroenterology were reported approximately equally (16–22%) to be the primary specialty providing bowel management. Many other specialists are used in a supportive role to provide bowel management in clinic including general surgery, nutrition, and colorectal surgery (Table 1).

The primary license or certification level of the providers who performed bowel management were physicians, followed by nurse practitioners (NPs) and registered nurses (RNs) (55%, 31%, 10% respectively). Two clinics reported that the physicians and NPs did an equal amount of care within their clinic. Beyond the primary provider, most clinics have others assisting in the management including physicians, NPs, physician assistants, RNs, clinic coordinators, nurse managers, and certified medical assistants (Table 2).

In cases involving surgical management of NBD, 69% of clinics report that the urologists do the majority of the cases, followed by general surgeons. Three clinics stated the gastroenterologist completes NBD procedures, such as Chait and cecostomy tubes. Two clinics refer cases that require procedures or surgeries to other centers (Table 1).

A recent comprehensive SBA survey of adults and caregivers of individuals with spina bifida found that NBD was the top concern of 79% of adults with spina bifida and 85% of their caregivers [13]. Research on NBD management has become a high priority area among the SBA and academics given the expressed importance of NBD on the community of those with spina bifida. NBD is managed by a range of healthcare providers from various specialties. Most clinics primarily involve urologists for NBD management, but other specialists are commonly utilized to provide primary management or a supportive role. A team approach appears to be commonplace among clinics with various licensed providers participating in care.

Urology was the specialty most commonly cited as being primarily responsible for NBD management and surgery. Bowel dysfunction and disorders usually fall under the gastroenterology or colorectal surgery specialties, and it is notable that for spina bifida patients this is not the case. This may be due to a lack of formal education and training during residencies or fellowships given that many individuals with spina bifida previously didn’t survive into adulthood and were considered to have more pressing health concerns than NBD, such as renal failure and hydrocephalus. The close association between bladder and bowel function likely has historically contributed to why so many urologists and urology healthcare providers have assumed the primary role of managing NBD. Not only does constipation negatively affect bladder function, but continence of only one system does not remove the need for protective undergarments. In an effort to reduce the total number of surgeries an individual needs, bowel management procedures are often conducted at the same time as bladder management surgeries, likely contributing to the large percentage of urologists completing bowel surgeries. Greater collaboration between specialties may improve outcomes and knowledge on NBD.

Recent data from the National Spina Bifida Patient Registry identified that bowel continence rates are disappointingly low with 45% of individuals over 5 years of age reporting continence [14]. Further, bowel continence rates vary significantly (24–59%) among SB clinics [15, 16]. The type of provider or specialty responsible for NBD management has not been examined for its potential association with outcomes. It is possible that despite the differences in who is responsible for management, the continence outcomes are still disappointingly low. Specific protocols do not currently exist for NBD management in spina bifida which allows for great variation in patient care. Further research is warranted to examine variations in management and continence outcomes.

Prior studies have identified that the hospital at which a patient receives care significantly impacts their likelihood of having a bowel surgery [15]. Likewise, NBD care is at risk of varying considerably based on provider and care team and its management should take advantage of the expertise that each specialty and provider type provides. Effective interdisciplinary care should emphasize teamwork, diminished boundaries between disciplines, functional intervention, and support to caregivers [17]. Based on these survey findings, an interdisciplinary care working-group should be created to guide treatment protocols for NBD in order to provide evidence-based best practices. Additionally, more research is needed to better understand what drives bowel continence in this population and what can improve the outcomes most directly. Impactful interventions for improving patient outcomes could include: starting bowel programs at younger ages, more frequent interactions with care providers, and formal evaluations for caregiver and patient readiness for management programs.

As research is disseminated at professional meetings and in peer-reviewed journals, significant effort should be undertaken to ensure that information is being shared in common-themed meetings and journals where providers from a variety of backgrounds that care for NBD are likely to be exposed. Disseminating research in places regularly accessed by just one specialty or type of provider only serves to limit its impact on the field.

5 Conclusion

Urology specialists most commonly manage NBD in surveyed spina bifida clinics. Many specialties and types of providers assist in management. Cross-disciplinary work should be carried out to adequately inform best practice protocols for NBD. Dissemination of NBD research may be best in cross-disciplinary journals and meetings rather than in a specific subspecialty.