Wiener John S, Suson Kristina D, Castillo Jonathan, Routh Jonathan C, Tanaka Stacy, Liu Tiebin, Ward Elisabeth, Thibadeau Judy, Joseph David, Registry National Spina Bifida Patient
Division of Urologic Surgery, Duke University Medical Center, Durham, NC, USA.
Department of Urology, Children's Hospital of Michigan, Detroit, MI, USA.
J Pediatr Rehabil Med. 2017 Dec 11;10(3-4):335-343. doi: 10.3233/PRM-170466.
Advances in care have allowed most children with spina bifida (SB) to live to adulthood. The majority have neuropathic bowel dysfunction (NBD), resulting in constipation, incontinence, and diminished quality of life. We sought to 1) describe contemporary NBD management and continence outcomes of adults with SB; 2) describe differences from younger patients; and 3) assess for association with socio-economic factors.
We analyzed data on NBD management and continence from the National Spina Bifida Patient Registry (NSBPR). Patients were segregated into young children (5-11 years), adolescents (12-19 years), and adults (20 years and older). A strict definition of continence was utilized. Statistical analysis compared cohorts by gender, ethnicity, SB type, lesion level, insurance status, educational attainment, employment status, and continence.
A total of 5209 SB patients were included, of whom 1370 (26.3%) were adults. Management and continence varied by age and SB type. Oral medication use did not differ between groups (5.2-6.6%). Suppositories and rectal enemas were used only by 11.5% of adults, which was significantly less than among school-aged children. Antegrade enemas were used by 17.7% of adults which was significantly less than among adolescents (27.2%). Adults were more likely to use digital stimulation or disimpaction or have undergone a colostomy. Bowel continence was reported by 58.3% of overall adult cohort: 55.6% of adults with myelomeningocele and 74.9% with non-myelomeningocele. Bowel continence was significantly associated with employment (p= 0.0002), private insurance (p= 0.0098), non-myelomeningocele type of SB (p= 0.0216) and educational attainment (p= 0.0324) on univariate analysis but only with employment on multivariable logistic regression (p= 0.0027).
Bowel management techniques differed between adults and younger patients with SB. Bowel continence was reported by over half of SB adults and was associated with socio-economic factors.
医疗水平的进步使大多数脊柱裂（SB）患儿能够活到成年。大多数患者患有神经源性肠功能障碍（NBD），导致便秘、失禁，生活质量下降。我们旨在：1）描述当代成年脊柱裂患者的NBD管理和控便结果；2）描述与年轻患者的差异；3）评估与社会经济因素的关联。
我们分析了国家脊柱裂患者登记处（NSBPR）中有关NBD管理和控便的数据。患者被分为幼儿（5 - 11岁）、青少年（12 - 19岁）和成年人（20岁及以上）。采用了严格的控便定义。统计分析按性别、种族、脊柱裂类型、病变水平、保险状况、教育程度、就业状况和控便情况对队列进行比较。
共纳入5209例脊柱裂患者，其中1370例（26.3%）为成年人。管理方式和控便情况因年龄和脊柱裂类型而异。各组口服药物使用率无差异（5.2 - 6.6%）。仅11.5%的成年人使用栓剂和直肠灌肠，显著低于学龄儿童。17.7%的成年人使用顺行灌肠，显著低于青少年（27.2%）。成年人更有可能使用手指刺激或粪便嵌塞清除或接受结肠造口术。总体成年队列中有58.3%报告有肠道控便能力：脊髓脊膜膨出成年患者中为55.6%，非脊髓脊膜膨出成年患者中为74.9%。单因素分析显示，肠道控便能力与就业（p = 0.0002）、私人保险（p = 0.0098）、非脊髓脊膜膨出型脊柱裂（p = 0.0216）和教育程度（p = 0.0324）显著相关，但多变量逻辑回归分析仅显示与就业相关（p = 0.0027）。
成年脊柱裂患者与年轻患者的肠道管理技术不同。超过一半的成年脊柱裂患者报告有肠道控便能力，且与社会经济因素相关。
