Choi Eun Kyoung, Im Young Jae, Han Sang Won
Eun Kyoung Choi, PhD, RN, CPNP, is Research Professor, College of Nursing, Yonsei University, Seodaemun-gu, Seoul, South Korea. Young Jae Im, MD, MS, is Clinical Assistant Professor, Department of Urology, Urological Science Institute, Yonsei University College of Medicine, Seodaemun-gu, Seoul, South Korea. Sang Won Han, PhD, MD, is Professor, Department of Urology, Urological Science Institute, Yonsei University College of Medicine, Seodaemun-gu, Seoul, South Korea.
Gastroenterol Nurs. 2017 May/Jun;40(3):208-215. doi: 10.1097/SGA.0000000000000135.
Bowel management is a concern in patients with spina bifida. We evaluated the status of bowel management in children with spina bifida (SB) and the effects on quality of life (QoL) of children and their caregivers. Data were collected from 173 children with SB between January and June 2011, whose bowel management status and QoL were assessed using a self-administered questionnaire. Of the 173 children, 38 (22.0%) reported normal defecation, 73 (42.2%) reported constipation only, and 62 (35.8%) reported fecal incontinence with/without constipation. For defecation, 59 children (34.1%) used digital stimulation or manual extraction, 28 (16.2%) used suppositories or enemas, 35 (20.3%) used laxatives, 4 (2.3%) used an antegrade continence enema, and 3 (1.7%) used transanal irrigation. There were significant differences in QoL, depending on defecation symptoms. Children with fecal incontinence and their caregivers had difficulties in travel and socialization (p < .0001), caregivers' emotions (p < .0001), family relationships (p < .0001), and finances (p < .0001). Constipation and fecal incontinence affect QoL of children with SB and their caregivers. Therefore, more attention should be paid to bowel problems and help should be provided to children and their caregivers to improve QoL.
肠道管理是脊柱裂患者需要关注的问题。我们评估了脊柱裂（SB）患儿的肠道管理状况以及对患儿及其照料者生活质量（QoL）的影响。2011年1月至6月期间，我们收集了173例SB患儿的数据，通过自行填写问卷评估他们的肠道管理状况和生活质量。在这173例患儿中，38例（22.0%）排便正常，73例（42.2%）仅报告有便秘，62例（35.8%）报告有大便失禁伴或不伴便秘。对于排便，59例患儿（34.1%）采用手指刺激或手法排便，28例（16.2%）使用栓剂或灌肠剂，35例（20.3%）使用泻药，4例（2.3%）使用顺行性节制灌肠，3例（1.7%）使用经肛门冲洗。生活质量根据排便症状存在显著差异。大便失禁患儿及其照料者在出行和社交方面存在困难（p < 0.0001）、照料者情绪方面（p < 0.0001）、家庭关系方面（p < 0.0001）以及经济方面（p < 0.0001）。便秘和大便失禁会影响SB患儿及其照料者的生活质量。因此，应更加关注肠道问题，并为患儿及其照料者提供帮助以提高生活质量。
