Quality of Life and Continence in Patients with Spina Bifida

• Published in: Quality of life research Vol. 15; no. 9; pp. 1481 - 1492
• Main Authors: Lemelle, J. L., Guillemin, F., Aubert, D., Guys, J. M., Lottmann, H., Lortat-Jacob, S., Mouriquand, P., Ruffion, A., Moscovici, J., Schmitt, M.
• Format: Journal Article
• Language: English
• Published: Netherlands Springer 01.11.2006; Springer Nature B.V
• Subjects: Adolescent; Adolescents; Adult; Child; Clinical and Policy Applications; Cross-Sectional Studies; Fecal Incontinence; Female; France; Humans; Interviews as Topic; Male; Medical Records; Middle Aged; Multicenter Studies as Topic; Multivariate analysis; Parents; Quality of Life; Retrospective Studies; Severity of Illness Index; Sexual abstinence; Spina bifida; Spinal Dysraphism - classification; Spinal Dysraphism - physiopathology; Spinal Dysraphism - psychology; Teenagers; Transponders; Urinary bladder; Urinary diversion; Urinary Incontinence; Walking; Wellbeing; France
• ISSN: 0962-9343; 1573-2649
• DOI: 10.1007/s11136-006-0032-x

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.