Summary
Introduction
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.
Objective
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.
Study design
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.
Results
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.
Discussion
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.
Conclusions
Tabled
1Summary Table. Urinary continence in relation to social participation and having a partner.
| Pat No 25 | Gender (M, F) | Urinary continence | Social participation | Partner | |
| Physical intimacy | Sexual intercourse | ||||
| 15 | M | 11 | 8 | 5 | 4 |
| 10 | F | 6 | 4 | 3 | 1 |
| Gender (M, F) | Urinary incontinence | Social participation | Partner | ||
| Physical intimacy | Sexual intercourse | ||||
| 15 | M | 4 | 0 | 0 | 0 |
| 10 | F | 4 | 0 | 0 | 0 |
Pat, patient; No, number; M, male; F, female.
Keywords
Abbreviations:
MMC (Myelomeningocele), CIC (Clean Intermittent Catheterization), HRQoL (Health-related quality of life), TAI (Transanal Irrigation), MACE (Malone Antegrade Colonic Enema)To read this article in full you will need to make a payment
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Article info
Publication history
Published online: August 14, 2018
Accepted:
August 6,
2018
Received:
December 22,
2017
Identification
Copyright
© 2018 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
