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Quality of life and continence in patients with spina bifida
J L Lemelle1, F Guillemin, D Aubert
1Service de Chirurgie Infantile, Hôpital d'Enfants, CHU de Nancy, Vandoeuvre les Nancy, France. jl.lemelle@chu-nancy.fr
Insights
Health Related Quality of Life (HRQoL) in spina bifida (SB) patients is lower than the general population. Incontinence and its management may not significantly impact SB patients' HRQoL, suggesting other factors are influential.
Area of Science:
- Urology
- Pediatrics
- Rehabilitation Medicine
Background:
- Spina bifida (SB) is a leading congenital cause of childhood incontinence.
- Understanding factors influencing Health Related Quality of Life (HRQoL) in SB patients is crucial for effective care.
Purpose of the Study:
- To investigate the relationship between urinary/faecal incontinence, management strategies, and HRQoL in individuals with SB.
- To identify key determinants of HRQoL in a large cohort of SB patients.
Main Methods:
- Cross-sectional study involving 460 patients (300 adults, 160 adolescents) across six French centers.
- Assessed walking ability, continence status, and medical management.
- HRQoL evaluated using SF36 (adults) and VSP (adolescents/parents); statistical analyses performed.
Main Results:
- SB patients exhibited significantly lower HRQoL compared to the general population.
- Adult women and adolescent females reported lower HRQoL, particularly in psychological well-being.
- No strong correlation found between incontinence and HRQoL; surgical management did not significantly improve HRQoL scores.
Conclusions:
- Incontinence and its medical management may not be the primary drivers of HRQoL in SB patients.
- Numerous other factors likely influence the overall HRQoL in this population.
- Longitudinal studies are recommended to explore the association between incontinence management and HRQoL improvements.
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 improved HRQoL.
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