Lemelle J L, Guillemin F, Aubert D, Guys J M, Lottmann H, Lortat-Jacob S, Mouriquand P, Ruffion A, Moscovici J, Schmitt M
Service de Chirurgie Infantile, Hôpital d'Enfants, CHU de Nancy, Vandoeuvre les Nancy, France.
Qual Life Res. 2006 Nov;15(9):1481-92. doi: 10.1007/s11136-006-0032-x. Epub 2006 Oct 11.
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.
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 improved HRQoL.
脊柱裂(SB)是儿童期最常见的先天性尿失禁病因。本研究旨在确定SB患者的尿/粪失禁、治疗方法与健康相关生活质量(HRQoL)之间的关系。
来自法国六个中心的460名患者(300名成年人和160名青少年)参与了这项横断面研究。临床结局指标包括行走能力、尿/粪失禁及医疗管理情况。采用SF36量表评估成年人的HRQoL,采用VSP量表评估青少年及其父母的HRQoL。采用单因素和多因素分析来确定临床参数与HRQoL之间的关系。
SB患者的HRQoL显著低于普通人群。成年女性的得分显著低于男性,青少年女性在心理健康方面的得分显著更低。在该人群中,我们未发现失禁与HRQoL之间存在密切关系。此外,接受尿/粪失禁手术治疗的患者HRQoL得分并未显著更高。
采用通用的HRQoL测量方法,尿/粪失禁及其医疗管理可能在SB患者的HRQoL中不发挥决定性作用。然而,许多其他因素会影响这些患者的HRQoL。建议采用纵向研究设计来评估失禁管理是否与HRQoL改善相关。