Department of Translational Medical Sciences, "Federico II" University, Via Pansini 5, 80131, Naples, Italy.
CNS Unit of Interventional Neuroradiology, Department of Advanced Biomedical Sciences, "Federico II" University, Naples, Italy.
Ital J Pediatr. 2024 Mar 13;50(1):48. doi: 10.1186/s13052-024-01579-z.
Urinary and fecal incontinence in people dealing with spina bifida, has inevitably an influence on the quality of life. In this analysis, the degree of education on how to manage incontinence and retention is studied, as well as the problems those might create and the consequential degree of autonomy and independence reached into the management of those. The main goal is to increase both nursing assistance and the education of the people dealing with spina bifida.
A multiple-choice questionnaire with open questions, concerning the bowel and bladder management was structured by all the authors and shared by the Google Docs platform among the members of the ASBI (Associazione Spina Bifida Italia) by the secretariat of the association itself. 125 patients affected by Spina Bifida voluntarily decided to participate and complete the questionnaire. The questionnaire didn't set any limits as regards the age. For minors, its completion was made under the observation of the caregivers who gave their consent. All the authors participated to administration of the questionnaire to minors.
out of 125 participants, 80 were females and 25 males. The questions concerned the level of deambulation (the 35,2% was autonomous, the 30,4% were people who use wheelchairs while the 34,4% is aid-supported), urinary incontinence, with great concern to the self-catheterization technique (the 80,8% claimed to be autonomous in performing self-catheterization, unlike the remaining 19,2%) and the impact of the said incontinence on social life (the 59,2% claimed they do not feel restrained because of their bladder incontinence or retention, unlike the remaining 40,8%). Lastly, we focused on fecal constipation and incontinence (the 57,6% claimed to struggle with incontinence, the 12% claimed they don't and the 30,4% struggles with both conditions), on the ability of the people dealing with this to intervene to prevent unpleasant situations, in particular by using trans-anal irrigation (the 57,6% doesn't feel autonomous in performing it).
urinary and fecal incontinence have, of course, an impact on the quality of life of people dealing with spina bifida. Nevertheless, we can observe that it is possible to improve the quality of life of these people, letting them feel confident enough to take part in social activities, through education from an incredibly young age, from 0 up to 25 years old and over, supplied by the medical staff and mostly by the parents (previously educated by the medical staff as well).
患有脊柱裂的人会出现尿便失禁，这不可避免地会影响生活质量。在这项分析中，研究了关于如何管理失禁和保留的教育程度，以及这些问题可能造成的问题，以及由此导致的管理自主性和独立性程度。主要目标是增加护理人员的帮助和对脊柱裂患者的教育。
由所有作者共同制定了一份关于肠和膀胱管理的多项选择问卷，并通过协会秘书处共享给意大利脊柱裂协会（ASBI）的成员。共有 125 名患有脊柱裂的患者自愿决定参与并完成问卷。问卷没有规定年龄限制。对于未成年人，由其照顾者在观察并同意的情况下完成。所有作者都参与了对未成年人的问卷管理。
在 125 名参与者中，80 名为女性，25 名为男性。问题涉及到活动能力（35.2%是自主的，30.4%是使用轮椅的，34.4%是辅助的）、尿失禁，以及非常关注自我导尿技术（80.8%声称能够自主进行自我导尿，而剩下的 19.2%则不然），以及失禁对社会生活的影响（59.2%声称他们不会因为膀胱失禁或保留而感到受限，而剩下的 40.8%则不然）。最后，我们关注了粪便便秘和失禁（57.6%声称有失禁问题，12%声称没有，30.4%同时存在这两种情况），以及患有这种疾病的人在防止不愉快情况方面的干预能力，特别是通过使用经肛门灌洗（57.6%不觉得自己能够自主进行该操作）。
尿便失禁当然会影响脊柱裂患者的生活质量。然而，我们可以观察到，通过从 0 岁到 25 岁及以上的年龄段，由医务人员主要是父母（之前也接受过医务人员的教育）为患者提供教育，可以提高这些人的生活质量，让他们有足够的信心参与社会活动。
