Quality of life related to urinary continence in adult spina bifida patients

Abstract

IntroductionTo analyze the correlations of bladder management technique, ambulatory status and urologic reconstruction on quality of life (QOL) as affected by urinary symptoms in adult spina bifida (SB) patients.Material and methodsSixty–six adult SB patients completed the RAND 36–Item Health Survey (mSF–36) and Incontinence Quality of Life (I–QOL). Demographic information, history of urinary reconstruction, and bladder management techniques were reviewed and analyzed with respect to survey scores.ResultsMean age of patients was 32.3 (SD ±7.2) years and 44 patients (66.7%) were female. Forty–five patients (68.2%) were mainly ambulatory, 21 (31.8%) use a wheelchair and 10 (15.2%) had urologic reconstruction, while 56 (83.3%) did not. Twelve patients (18.2%) void, 42 (63.6%) perform clean intermittent catheterization (CIC), 4 (6.1%) use an indwelling catheter, 3 (4.5%) have an ileal conduit (IC) and 5 (7.6%) mainly use diapers. Mean mSF–36 General Health score was 56.5 (SD ±22.9) and mean I–QOL Sum score was 50.9 (SD ±21.7), where lower scores reflect lower QOL. mSF–36 and I–QOL scores did not significantly correlate with bladder management technique, ambulatory status or urologic reconstruction. A correlation was noted between I–QOL scales and most mSF–36 scales (all p <0.02).ConclusionsIn our cohort study of adult SB patients, bladder management technique and urologic reconstruction did not correlate with urinary (I–QOL) or general health (mSF–36) domains, although I–QOL and mSF–36 scores correlated closely, suggesting urinary continence is significantly related to general QOL. However, we are unable to identify a single factor that improves either urinary or general QOL.

The ICF as a measure of effectiveness: structure, function, and contextual factors

“…5 Similarly, urinary incontinence has been negatively associated with general QOL in adults with spina bifida. 6 Although Smith et al 1 did not find significant associations between continence and QOL as measured by the Pediatric Quality of Life Inventory (PedsQL) in this sample, their qualitative data identifies important impacts of continence on social functioning and community participation. The children in their study expressed concerns about their classmates finding continence supplies in their backpacks, and struggled whether to share or conceal their bowel and bladder programs from peers.…”

“…5 Full return to normal cerebral perfusion occurs following spontaneous resolution of migraine attacks and also after treatment with the antimigraine drug rizatriptan, as shown in a case report. 6 Neuroimaging technology undoubtedly enhances our understanding of migraine and improves our ability to distinguish it from other cerebrovascular diseases. However, ASL and other functional MRI modalities, though safe to use, are only necessary for a very small number of carefully selected patients with atypical aura in whom cerebrovascular disease cannot be excluded.…”

A snapshot of the adult spina bifida patient – high incidence of urologic procedures

“…Nine patients (4.0%) in our study had an ileal conduit and 29 patients (12.8%) had undergone augmentation cystoplasty. Recent research assessing the quality of life in spina bifida adults suggests that the bladder management technique and history of urologic reconstruction did not translate into a significant change in health-related nor incontinence-related quality of life [ 20 ]. This highlights the importance of balancing both patient goals and quality of life related to urologic care as well as renal preservation.…”

A cross sectional single institution study of quality of life in adult patients with spina bifida

“…Spina bifida (SB) is a common birth defect, occurring in approximately 3‐5 of every 10 000 live births in the United States . While the disease was previously associated with high mortality early in life, 75% of patients with SB now survive into adulthood . Patients with SB face alterations in the normal functioning of a variety of organ systems.…”

“…1 While the disease was previously associated with high mortality early in life, 75% of patients with SB now survive into adulthood. 2 Patients with SB face alterations in the normal functioning of a variety of organ systems. However, urinary complaints and the sequelae of neurogenic bladder are almost universally present among this patient population.…”