A systematic review and comparison of questionnaires in the management of spinal cord injury, multiple sclerosis and the neurogenic bladder.

AIMS: Validated questionnaires are increasingly the preferred method used to obtain historical information. Specialized questionnaires exist validated for patients with neurogenic disease including neurogenic bladder. Those currently available are systematically reviewed and their potential for clinical and research use are described. METHODS: A systematic search via Medline and PubMed using the key terms questionnaire(s) crossed with Multiple Sclerosis (MS) and Spinal Cord Injury (SCI) for the years 1946 to January 22, 2014 inclusive. Additional articles were selected from review of references in the publications identified. Only peer reviewed articles published in English were included. RESULTS: 18 questionnaires exist validated for patients with neurogenic bladder; 14 related to MS, 3 for SCI, and 1 for neurogenic bladder in general; with 4 cross-validated in both MS and SCI. All 18 are validated for both male and female patients; 59% are available only in English. The domains of psychological impact and physical function are represented in 71% and 76% of questionnaires, respectively. None for the female population included elements to measure symptoms of prolapse. CONCLUSION: The last decade has seen an expansion of validated questionnaires to document bladder symptoms in neurogenic disease. Disease specific instruments are available for incorporation into the clinical setting for MS and SCI patients with neurogenic bladder. The availability of caregiver and interview options enhances suitability in clinical practice as they can be adapted to various extents of disability. Future developments should include expanded language validation to the top 10 global languages reported by the World Health Organization.

Urinary incontinence in spina bifida: Initial instrument validation.

The purpose of this study was to perform a psychometric assessment of the Incontinence Symptom Index-Pediatric (ISI-P) in a cohort of adolescents with spina bifida (SB) and neuropathic urinary incontinence (UI) to test its validity and reliability. The ISI-P, an 11-item instrument with domains for symptom severity and impairment, was self-administered by subjects 11-17 years old with SB and UI. Controls were 11-17 years old, with nephrolithiasis and no history of UI. Formal psychometric assessment included an evaluation of internal consistency, test re-test reliability and factor analysis. Of 78 study-eligible subjects we attempted to contact, 33 (66.7% female) with a median age of 13.1 years completed the ISI-P (42.3% response rate). 21 control patients also completed the ISI-P. Cronbach's alpha was 0.936 and 0.792 for the severity and bother factors respectively. The delta Chi-square test for the two-factor (vs. one-factor) model was significantly [χ(2)(89) = 107.823, p < 0.05] in favor of the former model with descriptive fit indices being excellent (e.g., comparative fit index = 0.969). Furthermore, category information analysis showed that all categories were associated with different threshold values, namely that each category contributed unique information for the measurement of the latent trait. In conclusion, the ISI-P has desirable psychometric properties for the measurement of UI symptom severity and impairment in adolescents with SB.

Managed care aspects of managing neurogenic bladder/neurogenic detrusor overactivity.

Neurogenic bladder (NGB) and neurogenic detrusor overactivity (NDO) manifesting in urinary incontinence (UI) can present substantial treatment challenges to clinicians managing patients with underlying neurologic disorders such as multiple sclerosis, Parkinson's disease, spinal cord injury, spina bifida, and stroke. Although the clinical disease burden alone is difficult for patients and those managing their disorders, the significant negative impact that NGB/NDO and UI can have on health-related quality of life and the economic costs surrounding these disorders can be devastating for patients already burdened with neurologic disorders. Careful clinician assessment of these quality-of-life issues and the economic impact of NGB/NDO with UI is needed to appropriately assess the burden these disorders place on patients and their management and to assist clinicians to design the most clinically, socially, and economically effective individualized management plans to optimize patient outcomes.

Characteristics of persons with overactive bladder of presumed neurologic origin: results from the Boston Area Community Health (BACH) survey.

AIMS: To compare the descriptive epidemiology of overactive bladder (OAB) of presumed neurologic origin (NOAB) to OAB of non-neurologic origin (N-NOAB). METHODS: Five thousand five hundred three community-dwelling persons aged 30-79 were interviewed regarding urologic symptoms (2002-2005). NOAB was defined as symptoms of urgency and/or urgency incontinence among those with a self-reported history of healthcare provider diagnosed stroke (N = 98), multiple sclerosis (N = 21), or Parkinson's disease (N = 7). N-NOAB was defined identically but occurring among those not reporting neurologic disease (ND). Prevalence estimates were weighted to reflect sampling design; chi-square, Fisher's exact, or t-tests were used to test differences. Urologic symptom interference was assessed using the Epstein scale, while the impact of urinary incontinence (UI) on health-related quality-of-life (HRQOL) was measured using a modification of the Incontinence Impact Questionnaire-7. RESULTS: Forty-five (31.0%) of 125 persons with ND and 994 (16.7%) of 5378 persons without ND reported OAB symptoms. The overall prevalence of NOAB and N-NOAB was 0.6% and 16.4%, respectively. Persons with NOAB had higher (worse) mean American Urologic Association Symptom Index scores (13.0 vs. 10.0, P = 0.09) compared to those with N-NOAB, and were significantly more likely to have diabetes, high blood pressure, cardiac disease, and fair/poor self-reported health (all P < 0.05). Mean symptom interference and UI HRQOL scores were significantly higher (worse) in the NOAB group compared to persons with N-NOAB (all P < 0.05). CONCLUSIONS: Persons with NOAB appeared to have a greater burden of urologic illness with respect to symptom interference and HRQOL compared to persons with N-NOAB.

Anticholinergic drugs for adult neurogenic detrusor overactivity: a systematic review and meta-analysis.

CONTEXT: There is a lack of evidence about the efficacy and safety of anticholinergic drugs and about the optimal anticholinergic drug, if any, for the treatment of adult neurogenic detrusor overactivity (NDO). OBJECTIVE: Review the current evidence on the efficacy, safety, and tolerability of anticholinergic drugs in the treatment of adult NDO. EVIDENCE ACQUISITION: A literature search was conducted from 1966 to May 2011. Meta-analysis of all published randomised controlled trials (RCTs) comparing anticholinergic drugs with placebo and comparing different types, doses, and routes of administration of anticholinergic drugs, in adults with NDO, was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analysis statement. The primary outcome was patient-reported cure/improvement of overactive bladder symptoms. Secondary outcomes were quality of life (QoL) changes, bladder diary events, urodynamic outcomes, adverse events, and costs to health services. EVIDENCE SYNTHESIS: A total of 960 patients from 16 RCTs with mean follow-up of 3.8 wk were included. Anticholinergic drugs were associated with statistically significantly better patient-reported cure/improvement (risk ratio: 2.80; 95% confidence interval [CI], 1.64 to 4.77), higher maximum cystometric capacity (weighted mean difference [WMD]: 49.49; 95% CI, 15.38 to 84.20), higher volume at first contraction (WMD: 49.92; 95% CI, 20.06 to 79.78), and lower maximum detrusor pressure (WMD: -38.30; 95% CI, -53.17 to -23.43) when compared with placebo. The dry-mouth rates were statistically significantly higher with anticholinergics, with no difference in withdrawals because of adverse events. There was no statistically significant difference in any of the outcomes between oxybutynin and other anticholinergics or among different doses and preparations of anticholinergic drugs. No study reported QoL changes or costs to health services. CONCLUSIONS: Compared with placebo, anticholinergic treatment in patients with NDO is associated with better patient-reported cure/improvement and significant reduction of maximum detrusor pressure; however, there is a higher incidence of adverse events. None of the anticholinergic drugs or different dosages assessed in this review was superior to another.

Care needs of persons with long-term spinal cord injury living at home in the Netherlands.

STUDY DESIGN: Cross-sectional survey. OBJECTIVES: To describe the care received, care needs and preventability of secondary conditions according to persons with long-term spinal cord injury (SCI) living at home. SETTING: The Netherlands. METHODS: A questionnaire was sent to all members of the Dutch SCI Patient Organisation. From a list of 26 SCI secondary conditions, participants chose the five conditions they perceived as most important. For each of these conditions, they described the type of care they received, their need for (extra) care and its preventability. RESULTS: Response rate was 45% (n=453) and mean time after injury was 13.3 years. In case of secondary conditions, participants were more likely to visit their general practitioner (58%) than another medical specialist (29%) or rehabilitation specialist (25%). For all most-important secondary conditions, care was received in 47% and care, or extra care, was needed in 41.3%. Treatment was the type of care most often received (29.5%) and needed (17.2%). However, for information and psychosocial care, the care needed (12.2 and 9.9%, respectively) was higher than the care received (7.6 and 5.9%, respectively). Thirty-four percent of all most-important secondary conditions were perceived as preventable, the rate increasing to 52.8% for pressure sores, of which 29.9% were considered to be preventable by the participants themselves. CONCLUSIONS: This study showed substantial unmet care needs in persons with long-term SCI living at home and underlines the further improvement of long-term care for this group. Information, psychosocial care and self-efficacy seem to be the areas to be enhanced.

Urological care of the spinal cord-injured patient.

Spinal cord injury (SCI) is a catastrophic occurrence affecting the lives of 11,000 people in the United States every year. Urologic complications account for much of the morbidity associated with SCI and as much as 15% of the associated mortality. Spinal cord-injured patients are required to digest a plethora of self-management information during the emotionally and psychologically distressing period immediately following their injury. As a vital resource in the SCI patients' recovery process, it is crucial for the WOC nurse to have knowledge of the specialized needs of this population. This article reviews the effects of SCI on bladder function, discusses potential complications of the neurogenic bladder, and provides an overview of management options to assist the patient in adaptation and restoration of quality of life.

Qualiveen, a urinary-disorder specific instrument: 0.5 corresponds to the minimal important difference.

OBJECTIVE: This study assessed the interpretability of changes in Qualiveen, a specific health-related quality-of-life (HRQOL) questionnaire for urinary disorders (UD) in multiple sclerosis (MS) patients. Qualiveen has 30 items focusing on four aspects of patients' lives related to their urinary problems: bother with limitations (nine items), frequency of limitations (eight items), fears (eight items), and feelings (five items). Response options are framed as 5-point Likert-type scales, and scores on each domain range from 0 to 4. STUDY DESIGN AND SETTING: One hundred twenty-one MS patients with UD completed Qualiveen at baseline and 2-10 weeks later. At the second visit, patients also made global ratings of change in urinary HRQOL (GRC) with a 15-point scale from -7 to +7. We addressed the validity of GRC by examining its relationships with pre- and post-Qualiveen scores and determined the mean change in score on each Qualiveen domain associated with small, moderate, and large changes in the corresponding GRC. RESULTS: The correlation of the change score with the corresponding GRC was substantially stronger than the correlation with either pre- or post-Qualiveen score, establishing the validity of the GRC. In all domains, a within-patient change in Qualiveen score of approximately 0.5 (range: 0.36-0.72) represents the minimal important difference. A change in score of approximately 0.7 corresponds to a moderate change in quality of life (range: 0.55-0.86). CONCLUSIONS: These estimates will help in interpreting the results of subsequent studies that use Qualiveen to examine the impact of interventions designed to improve urinary-specific HRQOL.

Assessment of treatment outcomes in patients with overactive bladder: importance of objective and subjective measures.

Overactive bladder (OAB) is a highly prevalent symptom syndrome that negatively affects health-related quality of life (HRQL). In clinical practice, the diagnosis and treatment of OAB are largely driven by a patient's reporting of symptoms, often in combination with objective assessment. Thus, OAB provides the opportunity to examine the relations between objective (eg, urodynamic studies, bladder diary variables) and subjective (eg, symptom bother, HRQL) outcomes. We compared objective and subjective results from 27 trials recently evaluated in a systematic review and meta-analysis of antimuscarinic agents used to treat OAB. Many studies demonstrated concurrent improvements in both types of outcomes. However, several reports showed that although pharmacotherapy may reduce micturition frequency or increase bladder capacity, treated patients may not perceive a significant benefit to HRQL. We conclude that objective assessments can help determine the underlying causes of OAB symptoms and assess the effects of treatment, but that these results are not always predictive of subjective outcomes, which are influenced by a patient's priorities and lifestyle, and thus highly individualized. A patient's perception of treatment success should be regarded as an important measure of efficacy because a patient considers the trade-offs between symptom improvement, adverse events, and effects on daily life when assessing overall treatment benefit. We recommend that subjective measures become standard considerations in the initial evaluation and treatment of patients with OAB.

Neuropathic bladder and intermittent catheterization: social and psychological impact on families.

Clean intermittent catheterization (CIC) is the mainstay of management in neuropathic vesicourethral dysfunction, both to improve continence and, more importantly, to preserve renal function. We looked at the effects of this procedure on children, adolescents, and their families. In particular, we wished to see if there were any differences between those who successfully catheterized and those who did not. Forty families were enrolled into the study. Ages of children and adolescents (23 females, 17 males) ranged from 1 to 20 years. Most participants (n=31) had spina bifida. Other causes of bladder dysfunction included transverse myelitis, spinal cord injury, and spinal neuroblastoma. Parents were assessed using the Effects of Handicap on Parents semi-structured interview, the Socioemotional Functioning Interview, and a semi-structured interview, specifically designed for the study, which looked at family characteristics and experience related to diagnosis and catheterization. In addition, the Rutter Parental 'A' Scale Questionnaire was used to screen for emotional and behavioural disorders in the child. Results showed that CIC by carer or self-catheterization itself did not cause major emotional and behavioural problems but the bladder problem may act as a focus that puts considerable strain family relationships. Although most parents disliked CIC they complied with the suggested management. It is important that all those involved understand the aims of management and success can be achieved by combined input from medical, psychological, and specialist nursing staff. The problem is lifelong and continued support from a multidisciplinary team is essential.

Neuropathic bladder and intermittent catheterization: social and psychological impact on children and adolescents.

This paper describes part of larger study involving 40 families of children and adolescents with neuropathic bladder looking at the psychosocial impact of catheterization on them and their families. This study focuses on their experiences of clean intermittent catheterization (CIC) and self-catheterization (SC). Twenty-eight children and adolescents (11 males, 17 females; mean age 9 years, SD 2 years 7 months, range 5 to 20 years) with neuropathic bladder (mostly with spina bifida) participated in a semi-structured interview to explore their understanding of micturition and catheterization, and their views about the introduction and practical use of this technique. Participants were invited to draw self-portraits and figure diagrams to depict their understanding of CIC and SC. Age-appropriate self-esteem measures (Harter Pictorial Scale of Perceived Competence, the Self-Perception Profile, and the Culture-Free Self-Esteem Inventory) were administered to see if catheterization status affected emotional well-being. In an extension of this study, children's experiences of SC were explored by a postal questionnaire to all children successfully using SC who were attending the Paediatric Neuropathic Bladder Clinic. Children aged <5 years, those with learning difficulties, and those using indwelling catheters were excluded. From a total sample of 66 (31 females, 35 males), 52 parents and 42 children and adolescents (28 females and 14 males) responded. No significant difference was observed in self-esteem for those successfully catheterizing. Specific challenges involved learning SC and practical use of the technique. Concerns were leakage and being wet, and peers finding out about their continence management. Implications for the education, problem solving, and support of families and young people to promote cooperation and optimal benefits from catheterization are discussed.