Advertisement

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

Abstract

Purpose:

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.

Results:

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.

Conclusion:

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.

Keywords

Spinal dysraphism Quality of life Urinary incontinence Fecal incontinence Outcome assessment 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

Notes

Acknowledgements

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.

References

  1. 1.
    Andresen EM, Meyers AR (2000). Health-related quality of life outcome measures. Arch Phys Med Rehabil 81(Suppl 2):S30–S45PubMedCrossRefGoogle Scholar
  2. 2.
    McDonald CM (1995). Rehabilitation of children with spinal dysraphism. Neurosurg Clin N Am 6:393–412PubMedGoogle Scholar
  3. 3.
    Shurtleff DB, Hayden PW, Chapman WH, et al. (1975) Myelodysplasia: Problems of long term survival and social function. West J Med 122:199–205PubMedGoogle Scholar
  4. 4.
    Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA (2001) Spina bifida outcome: A 25-year prospective. Pediatr Neurosurg 34(3):114–20PubMedCrossRefGoogle Scholar
  5. 5.
    Castree BJ, Walker JH (1981). The young adult with spina bifida. Br Med J 283:1040–1042CrossRefGoogle Scholar
  6. 6.
    Hunt GM (1990). Open spina bifida: Outcome for a complete cohort treated unselectively and followed into adulthood. Dev Med Child Neurol 32:108–118PubMedCrossRefGoogle Scholar
  7. 7.
    Appleton PL, Ellis NC, Minchom PE, Lawson V, Boll V, Jones P (1997). Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol 5:707–722Google Scholar
  8. 8.
    Guyatt GH, Feeny DH, Patrick DL (1993). Measuring health-related quality of life. Ann Intern Med 118:622–629PubMedGoogle Scholar
  9. 9.
    McCormick MC, Charney EB, Stemler MM (1986). Assessing the impact of a child with spina bifida on the family. Dev Med Child Neurol 28:53–61PubMedCrossRefGoogle Scholar
  10. 10.
    Lapides J, Diokno AC, Silber SJ, Lowe BS (1972). Clean intermittent self-catheterization in the treatment of urinary tract disease. J Urol 107:458PubMedGoogle Scholar
  11. 11.
    Lowe JB, Furness PD III, Barqawi AZ, Koyle MA (2002). Surgical management of the neuropathic bladder. Semin Pediatr Surg 11(2):120–127PubMedCrossRefGoogle Scholar
  12. 12.
    Mitrofanoff P (1980). Cystostomie continente trans-appendiculaire dans le traitement des vessies neurologiques. Chir Pediatr 21:297–305PubMedGoogle Scholar
  13. 13.
    Aslan AR, Kogan BA (2002). Conservative management in neurogenic bladder dysfunction. Curr Opin Urol 12(6):473–477PubMedCrossRefGoogle Scholar
  14. 14.
    Eire PF, Cives RV, Gago MC (1998). Faecal incontinence in children with spina bifida: The best conservative treatment. Spinal Cord 36(11):774–776PubMedCrossRefGoogle Scholar
  15. 15.
    Malone RS, Ransley PG, Kiely EM (1990). Preliminary report. The Antegrade Continence Enema. Lancet 336:1217–1218PubMedCrossRefGoogle Scholar
  16. 16.
    Mor Y, Quinn FMJ, Carr B, Mouriquand PD, Duffy PG, Ransley PG (1997). Combined Mitrofanoff and antegrade continence enema procedure for urinary and fecal incontinence. J Urol 158:192–195PubMedCrossRefGoogle Scholar
  17. 17.
    Simeonson RJ, McMillen JS, Huntington GS (2002). Secondary conditions in children with disabilities: Spina bifida as a case example. Ment Retard Dev Disabil Res Rev 8:198–205CrossRefGoogle Scholar
  18. 18.
    Sawin KJ, Brei TJ, Buran CF, Fastenau PS (2002). Factors associated with quality of life in adolescents with spina bifida. J Holist Nurs 20:279–304PubMedGoogle Scholar
  19. 19.
    Parkin PC, Kirpalani HM, Rosenbaum PL, et al. (1997) Development of a health-related quality of life instrument for use in children with spina bifida. Qual Life Res 6:123–132PubMedCrossRefGoogle Scholar
  20. 20.
    Moore C, Kogan B, Parekh A (2004). Impact of urinary incontinence on self-concept in children with spina bifida. J Urol 171:1659–1662PubMedCrossRefGoogle Scholar
  21. 21.
    Bomalaski MD, Teague JL, Brooks B (1995). The long-term impact of urological management on the quality of life of children with spina bifida. J Urol 154(2 Pt 2):778–781PubMedGoogle Scholar
  22. 22.
    No authors listed. The world health organization quality of life assessment (WHOQOL): Position paper from the world health organization. Soc Sci Med 1995; 41: 1403–1409Google Scholar
  23. 23.
    Ellsworth PI, Webb HW, Crump JM, Barraza MA, Stevens PS, Mesrobian HG (1996). The Malone antegrade colonic enema enhances the quality of life in children undergoing urological incontinence procedures. J Urol 155:1416–1418PubMedCrossRefGoogle Scholar
  24. 24.
    Leplège A, Mesbah M, Marquis P (1995). Analyse préliminaire des propriétés psychométriques de la version française su SF36 dans le cadre du projet IQOLA. Rev Epidémiol Santé Publ 43:371–379Google Scholar
  25. 25.
    Simeoni HC, Sapin C, Antoniotti S, Auquier P (2001). Health-related Quality of life reported by French adolescents: A predictive approach of health status?. J Adolesc Health 28:288–294PubMedCrossRefGoogle Scholar
  26. 26.
    Leplège A, Ecosse E, Pouchot J, Costle J, Perneger T. In: Le questionnaire MOS SF-36, manuel de l’utilisateur et guide d’interprétation des scores. Ed. Estem, page 68Google Scholar
  27. 27.
    Simeoni MC, Auquier P, Antoniotte S, et al. (2000) Validation of a French health-related quality of life instrument for adolescents: The VSP-A. Qual Life Res 9:393–403PubMedCrossRefGoogle Scholar
  28. 28.
    Tilford JM, Grosse SD, Robbins JM et al. (2005) Health state preference scores of children with spina bifida and their caregivers. Qual Life Res 14:1087–1098PubMedCrossRefGoogle Scholar
  29. 29.
    Malone PS, Wheeler RA, Williams JE (1994). Continence in patients with spina bifida: Long term results. Arch Dis Child 70(2):107–110PubMedCrossRefGoogle Scholar
  30. 30.
    Lemelle JL, Guillemin F, Aubert D, et al. (2006) A multicenter evaluation of urinary incontinence management and outcome in spina bifida. J Urol 175:208–212PubMedCrossRefGoogle Scholar
  31. 31.
    Chow SMK, Cummins SKL, Cummins RA (2005). Self-perceived quality of life of children and adolescents with physical disabilities in Hong Kong. Qual Life Res 14:415–423PubMedCrossRefGoogle Scholar
  32. 32.
    Landgraf JM (2002). Quality of life measures in chronic diseases in childhood (book review). Qual Life Res 11:609–611CrossRefGoogle Scholar
  33. 33.
    Connolly MA, Johnson JA (1999). Measuring quality of life in paediatric patients. Pharmacoeconomics 16:605–625PubMedCrossRefGoogle Scholar
  34. 34.
    Harding L (2001). Children’s quality of life assessment: A review of generic and health related quality of life measures completed by children and adolescents. Clin Psychol Psychother 8:79–96CrossRefGoogle Scholar
  35. 35.
    Cummins RA, Gullone E, Lau ALD (2002). Maintaining life satisfaction: the role of positive cognitive bias. J Happiness Stud 3:37–69CrossRefGoogle Scholar
  36. 36.
    Suh E, Diener E (1996). Events and subjective well being: Only recent events matter. J Pers Soc Psychol 70:1091–1102PubMedCrossRefGoogle Scholar
  37. 37.
    Sumfest JM, Burns MW, Mitchel ME (1993). The Mitrofanoff principle in urinary reconstruction. J Urol 150:1875–1878PubMedGoogle Scholar
  38. 38.
    Basu A, Meltzer D (2005). Implications of spillover effects within the family for medical cost-effectiveness analysis. Journal of health economics 24:751–773PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media, Inc. 2006

Authors and Affiliations

  • J.L. Lemelle
    • 1
    • 2
    • 9
  • 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

Personalised recommendations