Urinary continence appears to enhance social participation and intimate relations in adolescents with myelomeningocele

Abstract

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) instrumentsis 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 notand 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 surgeryin 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'sharder 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.