Neurogenic bowel treatments and continence outcomes in children and adults with myelomeningocele

Issue title: Guidelines for the Care of People with Spina Bifida

Guest editors: Timothy Brei, Heidi Castillo and Jonathan Castillo

Article type: Research Article

Authors: Kelly, Maryellen S.^{a; *} | Wiener, John S.^{a; 1} | Liu, Tiebin^b | Patel, Priya^c | Castillo, Heidi^d | Castillo, Jonathan^d | Dicianno, Brad E.^e | Jasien, Joan^f | Peterson, Paula^g | Routh, Jonathan C.^a | Sawin, Kathleen^h | Sherburne, Eileen^h | Smith, Kathrynⁱ | Taha, Asma^j | Worley, Gordon^{f; 1; 2}

Affiliations: [a] Division of Urology, Department of Surgery, Duke University, Durham, NC, USA | [b] National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA | [c] Oak Ridge Institute for Science and Education (ORISE), Oak Ridge, TN, USA | [d] Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA | [e] Department of Physical Medicine and Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA, USA | [f] Division of Pediatric Neurology, Department of Pediatrics, Duke University, Durham, NC, USA | [g] Department of Pediatrics, University of Utah, Salt Lake City, UT, USA | [h] Department of Nursing Research, Children’s Hospital of Wisconsin, USA and Self-management Science Center, College of Nursing, University of Wisconsin-Milwaukee, Milwaukee, WI, USA | [i] Department of Pediatrics, Keck School of Medicine, Los Angeles, CA, USA | [j] Doernbecher Children’s Hospital and School of Nursing, Oregon Health Sciences University, Portland, OR, USA

Correspondence: [*] Corresponding author: Maryellen S. Kelly, Division of Urology, Department of Surgery, Duke University, 20 Duke Medicine Circle, Box 3831, Durham, NC, 27710, USA. Tel.: +1 919 684 6994; Fax: +1 919 681 5507; E-mail: Maryellen.Kelly@duke.edu.

Note: [1] These authors had equal contribution as the senior authors.

Note: [2] On behalf of National Spina Bifida Patient Registry Coordinating Committee. A complete list of non-author contributors appears in Appendix A.

Abstract: PURPOSE: Neurogenic bowel dysfunction (NBD) is a common comorbidity of myelomeningocele (MMC), the most common and severe form of spina bifida. The National Spina Bifida Patient Registry (NSBPR) is a research collaboration between the CDC and Spina Bifida Clinics. Fecal continence (continence) outcomes for common treatment modalities for NBD have not been described in a large sample of individuals with MMC. NSBPR patients with MMC and NBD were studied to determine variation in continence status and their ability to perform their treatment independently according to treatment modality and individual characteristics. METHODS: Continence was defined as < 1 episode of incontinence per month. Eleven common treatments were evaluated. Inclusion criteria were established diagnoses of both MMC and NBD, as well as age ⩾ 5 years (n= 3670). Chi-square or exact statistical tests were used for bivariate analyses. Logistic regression models were used to estimate the odds of continence outcomes by age, sex, race/ethnicity, level of motor function, and insurance status. RESULTS: At total of 3670 members of the NSBPR met inclusion criteria between November 2013 and December 2017. Overall prevalence of continence was 45%. Prevalence ranged from 40–69% across different treatments. Among continent individuals, 60% achieved continence without surgery. Antegrade enemas were the most commonly used treatment and had the highest associated continence rate. Ability to carry out a treatment independently increased with age. Multivariable logistic regression showed significantly higher odds of continence among individuals aged ⩾ 12 years, female, non-Hispanic white, and with private insurance.

DOI: 10.3233/PRM-190667

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 13, no. 4, pp. 685-693, 2020