BOWEL AND BLADDER CONTINENCE IN CHILDREN WITH SPINA BIFIDA

脊柱裂儿童的肠道和膀胱节制

• 批准号: 7604698
• 负责人: ERIC B LEVEY
• 金额: $ 0.01万
• 依托单位: JOHNS HOPKINS UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-12-01 至 2007-09-16
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7604698
• 关键词: 18 year old; Accidents; Address; Adherence; Adolescent; Adult; Affect; Age; Area; Arts; Behavior Therapy; Behavioral; Bladder; Bladder Control; Blood Urea Nitrogen; Blood urea nitrogen measurement; Caring; Child; Childhood; Chronic; Clinic; Clinical; Clinical Data; Computer Retrieval of Information on Scientific Projects Database; Congenital Abnormality; Control Groups; Creatinine; Daily; Data; Development; Enrollment; Experimental Designs; Funding; Goals; Grant; Incentives; Incontinence; Individual; Institutes; Institution; Intervention; Interview; Intestines; Kidney; Kidney Failure; Live Birth; Measurement; Measures; Medical; Neurogenic Bladder; Odors; Operative Surgical Procedures; Participant; Pharmaceutical Preparations; Physiological; Population Study; Positive Reinforcements; Practice Management; Prospective Studies; Protocols documentation; Quality of life; Randomized; Rate; Recording of previous events; Recruitment Activity; Research; Research Personnel; Research Project Grants; Resources; Retrospective Studies; Schedule; School-Age Population; Self Perception; Skin; Social Environment; Social support; Source; Spinal Dysraphism; Standards of Weights and Measures; Study Subject; Telephone; Ultrasonography; United States; United States National Institutes of Health; Urinary tract infection; Urology; Week; Work; Writing; coping; design; experience; health related quality of life; improved; medical complication; programs; prospective; skills training; social; tool

This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Background: Spina bifida (SB) remains a common birth defect in the United states, affecting approximately one in three thousand live births. Even with medical and surgical advances made in the treatment of SB over the past 3 decades, management of neurogenic bladder and bowel remains a major challenge. A significant proportion of individuals with SB fail to ever achieve bladder and bowel continence. Many adults with SB consider bowel and bladder incontinence to be their most significant problem medically, financially, and socially. The untimely embarrassing accidents and odor associated with incontinence negatively impacts interactions in academic, work and social environments. Medical complicatons of neurogenic bladder and bowel include urinary tract infections, skin breakdown, and bowel impaction. There are still individuals with SB who develop chronic renal insuffiency and eventually kidney failure. Specific Aims: The overall goal of this research project is to systematically define and describe the physiological, behavioral and environmental variables that moderate interdisciplinary clinical practices for management of neurogenic bladder and bowel in children with SB. This study also aims to assess whether a state-of-the-art behavioral intervention in school-age and adolescent children with SB can supplement current bowel and bladder usual care practices to decrease medical complications and improve bowel and bladder continence, social relationships, and quality of life. Design: Both retrospective clinical data and prospective experimental data will be obtained and analyzed to address study aims. A retrospective chart review study will be done on about 100 individuals who were seen through the Kennedy Krieger Institute Spina Bifida Center in the past 3 years. The prospective study will utilize a two group experimental design with study participants randomized to an intervention group and a control group, with plans to enroll 30 subjects per group. The intervention group will receive Usual Care + Behavioral Intervention Protocol and the control group will receive Usual Care. Study Population: Study subjects will be individuals with spina bifida ages 5 to 18 years old. Subjects will be recruited through the KKI Spina Bifida Center, Johns Hopkins Pediatric Urology Clinic and from the surrounding area through the Chesapeake-Potomac Spina Bifida Association. Behavioral Intervention: The intervention group will participate in an 8-week behavioral intervention. A tool assessing barriers to medical adherence will be developed using our experience and findings of the retrospective study. Each subject in the intervention group will have an individualized assessment and development of a behavioral plan. Intervention will include antecedent management (a written daily schedule), pager prompting for medication and CIC, a behavioral incentive (positive reinforcement) program, coping skills training, and behavioral support therapy in clinic and by phone. Measurement: Measures will include a standard interview about medical and surgical history, current medical regimenand barriers to adherence. Baseline results of creatinine, BUN, GFR, kidney and bladder ultrasounds, and VCUG will be documented. Urodyanamic studies will be done at study entry and at one year. Measurement tools will include ratings of bladder and bowel continence, health-related quality of life, medical adherence, self-perception, and social support.

该副本是利用众多研究子项目之一 由NIH/NCRR资助的中心赠款提供的资源。子弹和 调查员（PI）可能已经从其他NIH来源获得了主要资金， 因此可以在其他清晰的条目中代表。列出的机构是 对于中心，这不一定是调查员的机构。 背景：脊柱裂（SB）仍然是美国常见的先天缺陷，影响了大约三千分之一的活产。 即使在过去30年中，随着SB治疗方面的医学和外科进步，神经源性膀胱和肠道的管理仍然是一个重大挑战。 SB患者的很大一部分无法实现膀胱和肠道。 许多患有SB的成年人认为肠道和膀胱尿失禁在医学，财务和社会上都是最重大的问题。 与尿失禁相关的不合时宜的尴尬事故和气味会对学术，工作和社会环境中的相互作用产生负面影响。 神经源性膀胱和肠道的医学复杂性包括尿路感染，皮肤崩溃和肠击。仍然有SB的人患有慢性肾功能不全，最终患有肾衰竭。 具体目的：该研究项目的总体目标是系统地定义和描述用于管理SB儿童神经源性膀胱和肠道的跨学科临床实践的生理，行为和环境变量。 这项研究还旨在评估对学龄和青春期儿童的最先进的行为干预是否可以补充当前的肠和膀胱通常的护理实践，以减少医疗并发症，并改善肠子和膀胱的延续，社会关系以及生活质量。 设计：将获得回顾性临床数据和前瞻性实验数据，并分析以解决研究目标。 回顾性图表审查研究将对过去三年中肯尼迪·克里格研究所史佩纳比菲达中心看到的约100个人进行。 这项前瞻性研究将利用两组实验设计，研究参与者随机分为干预组和一个对照组，并计划每组30名受试者。 干预小组将获得通常的护理 +行为干预协议，对照组将获得常规护理。 研究人群：研究对象将是脊柱裂的人5至18岁。 受试者将通过KKI Spina Bifida Center，Johns Hopkins儿科泌尿外科诊所以及周边地区通过Chesapeake-Potomac Spina Bifida Association招募。 行为干预：干预组将参加为期8周的行为干预。 通过我们的回顾性研究的经验和发现，将开发评估医学依从性障碍的工具。 干预组中的每个受试者将对行为计划进行个性化评估和发展。 干预措施将包括先例管理（书面日程），Pager提示药物和CIC，行为激励（积极的强化）计划，应对技能培训以及诊所和电话中的行为支持疗法。 测量：措施将包括有关医学和手术病史的标准访谈，当前的医疗方案和遵守障碍。 将记录肌酐，BUN，GFR，肾脏和膀胱超声波和VCUG的基线结果。 尿苷洋学研究将在研究进入和一年时进行。 测量工具将包括膀胱和肠道的评级，与健康相关的生活质量，依从性，自我认知和社会支持。