Quality of Life Research

, Volume 15, Issue 9, pp 1481–1492 | Cite as

Quality of Life and Continence in Patients with Spina Bifida

  • J.L. LemelleEmail author
  • F. Guillemin
  • D. Aubert
  • J.M. Guys
  • H. Lottmann
  • S. Lortat-Jacob
  • P. Mouriquand
  • A. Ruffion
  • J. Moscovici
  • M. Schmitt



Spina bifida (SB) is the most common congenital cause of incontinence in childhood. This study attempts to determine the relationships between urinary/faecal incontinence, methods of management, and Health Related Quality of Life (HRQoL) in people with SB.

Patients and method:

A total of 460 patients (300 adults and 160 adolescents) from six centres in France have taken part in this cross-sectional study. Clinical outcome measures included walking ability, urinary/faecal continence, and medical management. HRQoL was assessed using the SF36 in adults and the VSP in adolescents and their parents. Univariate and multivariate analysis was used to determine the relationships between clinical parameters and HRQoL.


HRQoL were significantly lower than in the general population. Adult women had significantly lower scores than men, and adolescent females had significantly lower scores for psychological well being. We did not found strong relationship between incontinence and HRQoL in this population. Moreover patients surgically managed for urinary/fecal incontinence did not show significantly higher scores of HRQoL.


Using generic HRQoL measures, urinary/faecal incontinence and their medical management may not play a determinant role in HRQoL of persons with SB. However many other factors affect HRQoL in these patients. A longitudinal study design is recommended to assess whether incontinence management is associated with improve HRQoL.


Spinal dysraphism Quality of life Urinary incontinence Fecal incontinence Outcome assessment 


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The authors wish to thank Ms MH. Blondin, Ms Dr. Berard, Mr Dr. Vadot, Ms Dr Bernuy, Mr Dr Kocer, Mr Dr Lachanat, Ms Dr Rumeau, Ms␣Dr Tassel, Ms Dr Viehl-Benmeridja, Ms Bertrand, Ms Baudean, Ms Bavy, Ms Moisan, Ms Castellin, Ms Lacape, Ms Jeangirard, the Lorraine Association of Spina Bifida, and the French Fédération of Spina Bifida Association.

The study was conducted with the support of the Clinical Epidemiology Center-Inserm (Institut National en Santé et Recherche Médicale) of Nancy, the Ministry of Health, and the Nancy University Hospital.


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Copyright information

© Springer Science+Business Media, Inc. 2006

Authors and Affiliations

  • J.L. Lemelle
    • 1
    • 2
    • 9
    Email author
  • F. Guillemin
    • 2
  • D. Aubert
    • 3
  • J.M. Guys
    • 4
  • H. Lottmann
    • 5
  • S. Lortat-Jacob
    • 5
  • P. Mouriquand
    • 6
  • A. Ruffion
    • 7
  • J. Moscovici
    • 8
  • M. Schmitt
    • 1
    • 9
  1. 1.Service de Chirurgie InfantileHôpital d’Enfants, CHU de NancyVandoeuvre les NancyFrance
  2. 2.EA 3444 – Service d’Epidémiologie et Evaluations cliniquesHôpital Marin – CHU de NancyNancyFrance
  3. 3.Service de Chirurgie InfantileHôpital Saint Jacques – CHU BesançonBesanconFrance
  4. 4.Service de Chirurgie InfantileHôpital d’Enfants La Timone – CHU de MarseilleMarseilleFrance
  5. 5.Service de chirurgie infantileHôpital Necker Enfants MaladesParisFrance
  6. 6.Service de chirurgie infantileHôpital Debrousse – CHU de LyonLyonFrance
  7. 7.Service d’urologieHôpital Henry Gabriel – CHU de LyonLyonFrance
  8. 8.Service de chirurgie infantileHôpital d’Enfants – CHU de ToulouseToulouseFrance
  9. 9.Department of Paediatric Surgery, Children’s HospitalNancy University School of MedicineVandoeuvre les NancyFrance

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