The association between urinary continence and quality of life in paediatric patients with spina bifida and tethered cord

Abstract

To determine the association between urinary continence and quality of life (QoL) in a paediatric spina bifida population. After appropriate ethics approval, a prospective study was initiated using multiple validated QoL instruments that were distributed to patients as they presented for their annual appointment at the Northern Alberta Spina Bifida Clinic (Edmonton, Alberta). General demographic information was collected and validated questionnaires were used. The survey package included two instruments to assess overall QoL: Global Pediatric QoL (PedsQL 4.0) and Health Specific QoL-Spina Bifida (HRQoL-SB). Two instruments were also included to quantify urinary symptoms and assess urinary specific QoL: the Urinary Incontinence Severity Index - Pediatric (ISI-P) and Urinary Specific QoL (PinQ). A total of 71 patients were enrolled in the study. The general QoL (PedsQL 4.0) and health-specific QoL (HRQoL-SB) scores for the population indicated an overall QoL of 66% (n=69) and 83% (n=67), respectively. Approximately 46% (33 of 71) reported >1 episode of urinary incontinence per week. Urinary continence was associated with a significantly higher urinary-specific QoL (PinQ; P<0.001), general QoL (PedsQL 4.0; P<0.05) and health-specific QoL (HRQoL-SB; P<0.05). Furthermore, urinary incontinence and its effect on QoL was not influenced by the presence of a shunt, level of the lesion or manner of dysraphism. These data suggest that QoL in patients with spina bifida is related to urinary continence. This effect appears to be independent of the type and level of the spinal dysraphism and the presence or absence of a shunt.