The Pediatric Surgery Department, Sahlgrenska University Hospital, Gothenburg, Sweden.
The Pediatric Surgery Department, Sahlgrenska University Hospital, Gothenburg, Sweden.
J Pediatr Urol. 2019 Feb;15(1):33.e1-33.e6. doi: 10.1016/j.jpurol.2018.08.008. Epub 2018 Aug 14.
The majority of adults with myelomeningocele (MMC) in Western Sweden use incontinence pads. There is an ongoing discussion as to whether continence improves the quality of life (QoL) in individuals with MMC as it has been hard to establish that an increase in QoL measured by generic health-related quality of life (HRQoL) instruments is achieved by continence surgery.
The hypotheses are that patients who are actively involved in a urotherapy/urology program are more continent than patients who are not and that urinary continence is one of the conditions required to enable social participation and physical intimacy.
All 25 individuals in Western Sweden with MMC (15 males) aged 16-18 years were involved in this cross-sectional, prospectively designed study of urinary and fecal continence. During interviews, questions were asked about the following: clean intermittent catheterization (CIC) and bowel regimens, the need for reminders or help from an assistant, social participation, and physical intimacy with a partner.
In the group, overall 17 of 25 (68%) had achieved urinary continence, 19 of 25 (76%) had a medical history of fecal continence, and 14 of 25 (56%) had no prescription for incontinence pads. Those who were urinary continent (17) included all nine patients who had received continence surgery in addition to six patients taking anticholinergics and two following the CIC procedure only. Urinary incontinence due to sphincter insufficiency was found in eight individuals, all of whom declined surgical treatment. All individuals (25/25) physically catheterized themselves, and 15/25 (60%) performed the fecal elimination regimen independently. Twelve individuals participated actively in social life, and eight of them had, or had had, a partner. All these 12 were urinary continent, and all but one were able to follow a fecal elimination regimen independently. Three of the 12 said they were fecal incontinent but knew how to become continent by following the prescribed fecal elimination regimen.
Studies in this patient group have shown that incontinence means that it's harder to live a healthy adult life. Children too worry about incontinence episodes at school, and 70% consider urinary incontinence a problem. A limitation in the study is the small population, something often seen in rare diseases.
With standardized follow-up, active treatment strategy and uro/bowel therapy, the urinary continence rate in adolescents with MMC at the study center is high compared with adults with MMC in Sweden. It appears that urinary continence is important in enabling successful participation in social life and in intimate physical relations with others.
在瑞典西部，大多数患有脊髓脊膜膨出症（MMC）的成年人都使用失禁垫。人们一直在讨论，对于患有 MMC 的个体而言，控制失禁是否能改善生活质量（QoL），因为很难确定通过控制失禁手术是否能提高通用健康相关生活质量（HRQoL）测量的 QoL。
假设积极参与尿路治疗/泌尿科计划的患者比未参与的患者更能控制尿失禁，并且尿失禁是能够参与社会活动和进行身体亲密接触的条件之一。
本研究为一项横断面前瞻性研究，纳入了瑞典西部 25 名年龄在 16-18 岁的 MMC 患者（15 名男性），研究尿失禁和粪便控制情况。在访谈中，询问了以下问题：间歇性导尿（CIC）和肠道方案、是否需要助理提醒或帮助、社会参与以及与伴侣的身体亲密关系。
在该组中，25 名患者中共有 17 名（68%）实现了尿失禁控制，25 名中有 19 名（76%）有粪便控制的病史，25 名中有 14 名（56%）没有失禁垫的处方。17 名实现尿失禁控制的患者包括 9 名接受过控制失禁手术的患者，以及 6 名服用抗胆碱能药物的患者和 2 名仅接受 CIC 治疗的患者。8 名患者因括约肌功能不全而出现尿失禁，他们均拒绝手术治疗。所有患者（25/25）均自行进行物理导尿，15/25（60%）独立完成粪便清除方案。12 名患者积极参与社会生活，其中 8 名有伴侣，或曾经有过伴侣。这 12 名患者均实现了尿失禁控制，且除 1 名外均能独立完成粪便清除方案。12 名患者中有 3 名自述粪便失禁，但他们表示可以通过遵循规定的粪便清除方案来实现控制。
在本患者群体的研究中表明，尿失禁意味着更难以过上健康的成年生活。儿童也会在学校担心尿失禁发作，70%的儿童认为尿失禁是一个问题。该研究的局限性在于患者人群较小，这在罕见疾病中经常出现。
在研究中心，与瑞典的成年 MMC 患者相比，接受标准化随访、积极治疗策略和尿路/肠道治疗的青少年 MMC 患者的尿失禁控制率较高。似乎尿失禁对于成功参与社会生活和与他人进行亲密的身体关系非常重要。
