Peninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.
Evidence Synthesis & Modelling for Health Improvement (ESMI), University of Exeter Medical School, University of Exeter, Exeter, UK.
Health Technol Assess. 2021 Nov;25(73):1-258. doi: 10.3310/hta25730.
Children and young people with neurodisability often need help to achieve socially acceptable bladder and bowel control. Approaches vary depending on whether or not the impairment results from spinal cord pathology that impairs motor control and sensation of the bladder and bowel. Currently, there is uncertainty about which interventions are effective.
The objective was to summarise the available evidence on and current practice for improving continence in children and young people with neurodisability.
A systematic review of the effectiveness, cost-effectiveness and factors that modify intervention implementation, alongside a cross-sectional, online survey of current practice with health professionals, parent carers, school and care staff and young people with neurodisability.
Twelve databases were searched in the review, resulting in 5756 references; 71 studies (72 papers) were included in the analyses. Most of the evidence was for children with spinal cord pathology, which involved evaluations of pharmacological approaches and surgical techniques, whereas the evidence pertaining to those with non-spinal-cord-related pathology tended to be for behavioural interventions. The methodological quality of studies was rated as being moderate to poor. There were three robust qualitative studies about the experience of continence among children with spinal cord pathology. We found substantial heterogeneity across the interventions that we evaluated in terms of quality, study design and outcomes measured. No economic studies were found. The results were synthesised narratively and reported in text and tables. We did not find any eligible studies evaluating interventions using toilet and clothing adaptations in the review, although the survey highlighted that these types of interventions are frequently used and considered. In total, 949 people responded to the survey: 202 health professionals, 605 parent carers, 122 school and social care staff, and 20 young people. The survey results illustrated the different roles that professionals have in improving continence, highlighting the importance of a multidisciplinary approach to supporting children and young people and their families. Clinicians employ a range of assessments and interventions to improve continence or independent toileting, depending on the needs of the child.
Quantitative studies in the review were not methodologically robust. The survey had a risk of response bias.
Our research found a dearth of good-quality evidence for many of the interventions currently in use, and no evidence of experiences of implementing interventions for children with non-spinal-cord-related pathology. There was also no evidence of cost-effectiveness of any of the interventions.
There is a need to involve young people and families in the design of high-quality evaluative research for interventions that aim to improve continence. This is especially the case for children with autism and learning disability, who have been neglected in previous evaluative and qualitative research. We recommend better training for health, education and care professionals about toileting, informed by evidence and the lived experiences of children and their families. We recommend a joined-up multidisciplinary and holistic approach to improving continence to maximise independence, dignity and comfort. It is vital that children and young people with neurodisability have early access to regular, integrated assessment of their bladder and bowel health, and are fully supported with appropriate personalised treatment.
This study is registered as PROSPERO CRD42018100572.
This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in ; Vol. 25, No. 73. See the NIHR Journals Library website for further project information.
患有神经发育障碍的儿童和青少年通常需要帮助才能实现社会可接受的膀胱和肠道控制。方法因脊髓病理是否损害膀胱和肠道的运动控制和感觉而有所不同。目前，对于哪些干预措施有效还存在不确定性。
总结改善神经发育障碍儿童和青少年控便能力的现有证据和当前实践。
对干预措施的有效性、成本效益以及影响干预实施的因素进行系统评价，同时对卫生专业人员、家长、学校和护理人员以及神经发育障碍的年轻人进行横断面、在线的当前实践调查。
在系统评价中检索了 12 个数据库，产生了 5756 条参考文献；纳入了 71 项研究（72 篇论文）进行分析。大多数证据来自脊髓病理的儿童，涉及药物治疗方法和手术技术的评估，而与非脊髓相关病理相关的证据往往是针对行为干预。研究的方法学质量被评为中等至较差。有三项关于脊髓病理儿童控便体验的稳健定性研究。我们发现，我们评估的干预措施在质量、研究设计和测量的结果方面存在很大的异质性。没有发现经济研究。结果以叙述的方式进行综合，并以文字和表格的形式报告。我们在综述中没有发现任何评估使用厕所和服装适应干预措施的合格研究，尽管调查突出表明这些类型的干预措施经常被使用和考虑。共有 949 人对调查做出了回应：202 名卫生专业人员、605 名家长、122 名学校和社会护理人员以及 20 名年轻人。调查结果说明了专业人员在改善控便方面的不同作用，突出了多学科方法对支持儿童和青少年及其家庭的重要性。临床医生根据儿童的需求，采用一系列评估和干预措施来改善控便或独立如厕。
综述中的定量研究方法不够稳健。调查存在回应偏倚的风险。
我们的研究发现，目前许多常用干预措施的高质量证据不足，并且没有非脊髓相关病理儿童实施干预措施的经验证据。也没有任何干预措施具有成本效益的证据。
需要让年轻人和家庭参与旨在改善控便的干预措施的高质量评估性研究的设计。对于自闭症和学习障碍的儿童来说尤其如此，他们在之前的评估性和定性研究中被忽视了。我们建议卫生、教育和护理专业人员根据证据和儿童及其家庭的生活经历，更好地接受关于如厕的培训。我们建议采取多学科和整体的方法来改善控便，以最大限度地提高独立性、尊严和舒适度。至关重要的是，患有神经发育障碍的儿童和青少年应及早定期接受他们的膀胱和肠道健康状况的综合评估，并获得适当的个性化治疗。
本研究已在 PROSPERO（注册号：CRD42018100572）注册。
该项目由英国国家卫生研究院（NIHR）卫生技术评估计划资助，将在 ; Vol. 25, No. 73. 中全文发表。请访问英国国家卫生研究院期刊图书馆网站以获取更多项目信息。
