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Bowel Management Treatment and Continence Outcomes in Myelomeningocele Patients: Data from the National Spina Bifida Patient Registry (NSBPR)
Maryellen S. Kelly, DNP, CPNP1, Gordon Worley, MD1, Heidi Castillo, MD2, Jonathan Castillo, MD, MPH2, Brad Dicianno, MD3, Joan Jasien, MD, FNP1, Tiebin Liu, MSPH4, Priya Patel, MPH4, Paula Peterson, APRN, PNP5, Jonathan C. Routh, MD, MPH1, Kathleen Sawin, PhD, CPNP6, Eileen Sherburne, PhD, APNP6, Kathryn Smith, DrPh, MSN7, Asma Taha, PhD, RN8, John S. Wiener, MD1.
1Duke University, Durham, NC, USA, 2Texas Children's Hospital, Houston, TX, USA, 3University of Pittsburgh, Pittsburgh, PA, USA, 4Centers for Disease Control and Prevention, Atlanta, GA, USA, 5University of Utah, Salt Lake City, UT, USA, 6Children's Hospital of Wisconsin, Milwaukee, WI, USA, 7Children's Hospital of Los Angeles, Los Angeles, CA, USA, 8Oregon Health Sciences University, Portland, OR, USA.

Background: Neurogenic bowel dysfunction (NBD), defined as bowel incontinence and/or constipation, affects most people with spina bifida (SB) and has been shown to cause significant emotional, physical and psychological distress. A variety of treatment modalities are employed to manage NBD, but the success rates of these treatments in SB patients have not been well-studied. We sought 1) to use the NSBPR to compare the outcomes of 12 treatment modalities for NBD in SB patients and 2) to analyze factors that may influence usage and effectiveness of the treatment modalities.
Methods: Data from Version 2.0 or higher of the NSBPR beginning October 2013 were used. NBD was defined as having greater than one bowel incontinence episode per month and/or using any treatment modality for NBD. Inclusion criteria included age ≥ 5 years with myelomeningocele and NBD. Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate rates of continence for patients, evaluating for differences by age, gender, race/ethnicity, lesion level and insurance type.
Results: A total of 3,670 patients met inclusion criteria (81% of all myelomeningocele patients in the NSBPR age ≥ 5 years). Fourteen percent (n=519) of patients reported not using any intervention to manage their bowels. The most commonly utilized treatment modalities were antegrade enemas (n=971, 26.5%) and oral medications alone (n=828, 22.6%).The three modalities with the highest overall (all ages and lesion levels) rates of continence were antegrade enemas, cone/balloon large volume enemas, and Peristeen transanal irrigation (68.6%, 58.5%, 57.9%, respectively). Manual disimpaction and oral medications had the lowest overall continence rates (35.9% and 39.7%). In children ages 5-11 years, antegrade enema was the treatment modality with the highest continence rate (66.0%). Among adolescents (ages 12-19 years) Peristeen transanal irrigation was the treatment modality with the highest continence rate (80.0%). Among adults, antegrade enema was the treatment modality with the highest continence rate (69.3%). All modalities were similarly effective at achieving continence across various lesion levels, with the exception of oral medications used alone. Oral medications alone were significantly more effective in patients with sacral level lesions than in those with higher level lesions (low-lumbar, mid-lumbar, high-lumbar and thoracic) (54.7% vs 43.0%, 37.1%, 33.3%, 29.7% respectively, p=<0.0001). The addition of oral agents to other treatment modalities is associated with decreased continence rates. The rate of independently completing the treatment modality with no assistance increased for all modalities with age. Multivariable logistic regression showed a significantly higher rate of continence for patients aged > 12 years, female, non-Hispanic white, and with private insurance. No differences were noted among patients with different lesion levels.
Conclusion: Multiple treatment modalities are used to treat NBD in patients with myelomeningocele, but overall continence rates are modest, with a range of 35.9-68.6. The addition of oral agents to other treatment modalities may decrease the effectiveness of other modalities. Antegrade enemas achieved the highest rate of continence in this population. Older, female, and non-Hispanic white patients with private insurance are more likely to be continent.

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