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



      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.

      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.


      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.


      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.



      MMC (Myelomeningocele), CIC (Clean Intermittent Catheterization), HRQoL (Health-related quality of life), TAI (Transanal Irrigation), MACE (Malone Antegrade Colonic Enema)
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        • Mattsson S.
        • Gladh G.
        Children with myelomeningocele become adults.
        Läkartidningen. 2005; 12–18: 2566-2570
        • Socialstyrelsen (The Swedish National Board of Health and Welfare)
        Official statistics of Sweden; statistics health and medical care; birth defects.
        2014 (Available from:)
        • Juranek J.
        • Sahlman M.
        Anomalous development of brain structure and function in spina bifida myelomeningocele.
        Developmental Disabilities Res Rev. 2010; 16: 23-30
        • Lindehall B.
        • Möller A.
        • Hjälmås K.
        • Jodal U.
        • Abrahamsson K.
        Psychosocial factors in teenagers and young adults with myelomeningocele and clean intermittent catheterization.
        Scand J Urol Nephrol. 2008; 42: 539-544
        • Vu Minh Arnell M.
        • Seljee Svedberg K.
        • Lindehall B.
        • Jodal U.
        • Abrahamsson K.
        Adults with myelomeningocele: an interview study about life situation and bladder and bowel management.
        J Pediatr Urol. 2013; 9: 267-271
        • Devine K.
        • Holmbeck G.
        • Gayes L.
        • Purnell J.
        Friendships of children and adolescents with spina bifida: social adjustment, social performance, and social skills.
        J Pediatr Psychol. 2011; 37: 220-231
        • Gladh G.
        • Mattsson S.
        Nationellt vårdprogram för barn med neurogen blås- och tarmstörning.
        Socialstyrelsen, 1998 (ISSN 1403-3348)
        • Verhoef M.
        • Lurvink M.
        • Barf H.A.
        • Post M.W.M.
        • van Asbeck F.W.A.
        • Gooskens R.H.J.M.
        • et al.
        High prevalence of incontinence among young adults with spina bifida: description, prediction and problem perception.
        Spinal Cord. 2005; 43: 331-340
        • Moore C.
        • Kogan B.A.
        • Parekh A.
        Impact of urinary incontinence on self-concept in children with spina bifida.
        J Urol. 2004; 171: 1659-1662
        • Fischer N.
        • Church P.
        • Lyons J.
        • McPherson A.C.
        A qualitative exploration of the experiences of children with spina bifida and their parents around incontinence and social participation.
        Child Care Health Dev. 2015; 41 (Epub 2015 May 23): 954-962
        • Lemelle J.L.
        • Guillemin F.
        • Aubert D.
        • Guys J.M.
        • Lottmann H.
        • Lortat-Jacob S.
        • et al.
        Quality of life and continence in patients with spina bifida.
        Qual Life Res. 2006; 15: 1481-1492
        • MacNeily A.E.
        • Jafari S.
        • Scott H.
        • Dalgetty A.
        • Afshar K.
        Health related quality of life in patients with spina bifida: a prospective assessment before and after lower urinary tract reconstruction.
        J Urol. 2009; 182: 1984-1991
        • Olesen J.D.
        • Kiddoo D.A.
        • Metcalfe P.D.
        The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord.
        Paediatr Child Health. 2013; 18: e32-e38
        • Shelton T.L.
        • Stepanek J.S.
        Excerpts from family-centered care for children needing specialized health and developmental services.
        Pediatr Nurs. 1995; 21: 362-364
        • Lloyd J.C.1
        • Nseyo U.
        • Madden-Fuentes R.J.
        • Ross S.S.
        • Wiener J.S.
        • Routh J.C.
        Reviewing definitions of urinary continence in the contemporary spina bifida literature: a call for clarity.
        J Pediatr Urol. 2013; 9: 567-574
        • Bellin M.H.
        • Sawin K.J.
        • Roux G.
        • Buran C.F.
        • Brei T.J.
        The experience of adolescent women living with spina bifida part I: self-concept and family relationships.
        Rehabil Nurs. 2007; 32: 57-67
        • De Kort L.M.
        • Bower W.F.
        • Swithinbank L.V.
        • Marschall-Kehrel D.
        • de Jong T.P.
        • Bauer S.B.
        The management of adolescents with neurogenic urinary tract and bowel dysfunction.
        Neurourol Urodyn. 2012; 31 (Epub 2012 Mar 27): 1170-1174
        • Vande Velde S.
        • Van Biervliet S.
        • Van Laecke E.
        Colon enemas for fecal incontinence in patients with spina bifida.
        J Urol. 2013; 189: 300-304
        • Wide P.
        • Mattsson G.G.
        • Drott P.1
        • Mattsson S.
        Independence does not come with the method--treatment of neurogenic bowel dysfunction in children with myelomeningocele.
        Acta Paediatr. 2014; 103: 1159-1164
        • Barf H.
        • Post M.
        • Verhoef M.
        • Jennekens-Schinkel A.
        • Gooskens M.
        • Prevo H.
        Restrictions in social participation of young adults with spina bifida.
        Disabil Rehabil. 2009; 31: 921-927
        • Barf H.
        • Post M.W.
        • Verhoef M.
        • Jennekens-Schinkel A.
        • Gooskens R.H.
        • Prevo A.J.
        Life satisfaction of young adults with spina bifida.
        Dev Med Child Neurol. 2007; 49: 458-463
        • Gamé X.
        • Moscovici J.
        • Guillotreau J.
        • Roumiguié M.
        • Rischmann P.
        • Malavaud B.
        Sexual function of young women with myelomeningocele.
        J Pediatr Urol. 2014; 10 (Epub 2013 Aug 27): 418-423
        • Shoshan L.
        • Ben-Zvi D.
        • Meyer S.
        • Katz-Leurer M.
        Sexuality in relation to independence in daily functions among young people with spina bifida living in Israel.
        Rehabil Nurs. 2012 Jan; 37: 11

        • Liptak G.S.
        • Kennedy J.A.
        • Dosa N.P.
        Youth with spina bifida and transitions: health and social participation in a nationally represented sample.
        J Pediatr. 2010; 157 (588.e1. Epub 2010 May 20): 584-588