Unexpected challenges faced by caregivers of children with neurogenic bladder: A qualitative study.

BACKGROUND: Management of the neurogenic bladder is variable, complex, and often requires a demanding bladder care regimen which may present caregiver burdens that are unique among chronic disease. While research into patient quality of life is increasing, parallel study of the caregiver experience is scant. Existing research primarily comprises survey data using validated instruments originally developed for non-urologic conditions, such as dementia. These surveys may detect high caregiver burden and decreased quality of life amongst caregivers but are limited in their ability to understand the underlying causes. OBJECTIVE: To characterize the experience of those caring for children with neurogenic bladders, with a focus on unexpected burdens and challenges. METHODS: In light of limited existing research, a qualitative research methodology was selected to explore the caregiver experience. Semi-structured phone interviews were conducted with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a single tertiary pediatric referral center. Purposive sampling was used to ensure diverse representation. Interviews were recorded, transcribed, and professionally translated if needed. Transcripts were analyzed using a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software. Member-checking focus groups were held to validate the results. RESULTS: Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three primary themes emerged surrounding the topic of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization and supplies, 3. Urinary tract infections. Member-checking focus groups validated the thematic analysis and provided additional insights into mitigating factors for these challenges. A child's independence with his or her health care regimen was cited as particularly important for decreasing caregiver burden. DISCUSSION: Caregivers of children with neurogenic bladder report their role is more difficult than they anticipated it would be. Catheterization represents a particularly burdensome task, and recurrent infections are an unexpected and persistent medical challenge. Understanding unexpected challenges that caregivers face will help pediatric urologists target modifiable factors to decrease caregiver burden, address current gaps in counseling and expectation-setting, and set the stage for more complete shared decision-making. CONCLUSIONS: This study represents an initial qualitative characterization of the experience caring for a child with neurogenic bladder. This is a key first step in understanding how caregivers make decisions for their children and their families. This initial study is foundational to a larger project to create a decision aid for caregivers of children with neurogenic bladder.

Time-Related Changes in Patient Reported Bladder Symptoms and Satisfaction after Spinal Cord Injury.

PURPOSE: Increased time after spinal cord injury (SCI) is associated with a migration to bladder managements with higher morbidity such as indwelling catheter (IDC). Still, it is unclear how this affects bladder-related quality of life (QoL). We hypothesized that time from injury (TFI) would be associated with changes in bladder management, symptoms and satisfaction. MATERIALS AND METHODS: Cross-sectional analysis of time-related changes in patient-reported bladder management, symptoms and satisfaction using the Neurogenic Bladder Research Group SCI Registry. Outcomes included Neurogenic Bladder Symptom Score (NBSS) and bladder-related satisfaction (NBSS-satisfaction). Multivariable regression was performed to assess associations between TFI and outcomes, adjusting for participant characteristics, injury specifics, and psychosocial aspects of health-related QoL. Participants with TFI <1 year were excluded and TFI was categorized 1-5 (reference), 6-10, 11-15, 16-20 and >20 years. RESULTS: Of 1,420 participants mean age at injury was 29.7 years (SD 13.4) and mean TFI was 15.2 years (SD 11.6). Participants grouped by TFI included 298 (21%) 1-5, 340 (24%) 6-10, 198 (14%) 11-15, 149 (10%) 16-20 and 435 (31%) >20 years. As TFI increased, clean intermittent catheterization (CIC) declined (55% 1-5 vs 45% >20 years, p <0.001) and IDC increased (16% 1-5 vs 21% >20 years, p <0.001). On multivariable analysis, increased TFI was associated with fewer bladder symptoms at >20 years from injury (-3.21 [CI -1.29, -5.14, p <0.001]) and better satisfaction (6-10 years -0.20 [CI -0.41, 0.01, p=0.070], 11-15 years -0.36 [CI -0.60, -0.11, p=0.002], 16-20 years -0.59 [CI -0.86, -0.32, p <0.001], >20 years -0.85 [CI -1.07, -0.63, <0.001]). CONCLUSIONS: After SCI, CIC decreases and IDC increases over time; however, increasing TFI is associated with reduced urinary symptoms and improved bladder-related satisfaction.

A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization.

OBJECTIVES: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. METHODS: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. RESULTS: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed "Impact on Life" goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. CONCLUSIONS: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

Factors impacting transition readiness in young adults with neuropathic bladder.

INTRODUCTION: Patients with spina bifida (SB) often have cognitive impairments making the difficult transition process to adult care even more challenging. OBJECTIVE: The objective of this study was to identify what patient factors impact transition readiness in this population. It is hypothesized that young adults with SB with more healthcare exposure were more likely to report readiness to transition. METHODS: Consecutive patients ≥18 years old in the adult SB clinic were evaluated using the validated Transition Readiness Assessment Questionnaire (TRAQ, 8/17-5/18). Five TRAQ domains assess 20 skills necessary to transition. Responses are 1 No, I do not know how"; 2 No, but I want to learn"; 3 No, but I am learning how to do this"; 4 Yes, I have started doing this"; 5 Yes, I always do this when I need to" (considered "fully transitioned"). Demographics, ambulatory status, shunt status, shunt revisions, number of medications, and prior bladder augmentation were assessed. Domain and total TRAQ scores were analyzed using non-parametric statistics and linear regression. RESULTS: Ninety-six patients (60.4% females, 70.8% shunted) participated at median age 25.5 years. Overall median TRAQ score was 4.0/5.0, indicating that patients were starting to transition. On univariate analysis, age >25 years was associated with higher TRAQ scores across every domain and overall (P ≤ 0.01). Female gender was also associated with higher TRAQ scores for "Appointment Keeping," "Tracking Health Issues" and overall (P ≤ 0.03). Race, ambulatory status, shunt status, number of shunt revisions, number of medications, and prior bladder augmentation were not associated with TRAQ scores (P ≥ 0.12). After adjusting for gender on bivariate analysis, age >25 years was associated with higher TRAQ scores for "Appointment Keeping," "Tracking Health Issues," "Talking with Providers," and "Managing Daily Activities" domains and overall (P ≤ 0.03), but not the "Managing Medications" domain (P = 0.07). Female gender was not independently associated with higher domain or overall TRAQ scores (P≥0.10). DISCUSSION: The transition readiness of young adults with SB compared based on demographic factors and factors increasing healthcare exposure is described. Limitations include the small sample size, potentially limiting generalizability, as well as cross-sectional nature. CONCLUSION: Transitioning adults with SB had TRAQ scores indicating that they were not yet fully transitioned in terms of their healthcare-related behavior. Older age was the only factor associated with transition readiness, which was not impacted by other demographics. Increased attention to transition readiness and consideration of a longer transition process in this population is necessary.

A new bladder-emptying method in females with neurogenic bladder: A randomized, phase II trial.

AIM: To evaluate the performance of the new device compared with clean intermittent catheterization (CIC). METHODS: From March 2015 to March 2018, patients who were admitted to the urologic outpatient clinic. A new intraurethral self-retaining device (ISRD) was made of medical grade silicone and it was inspired by similar catheters that use sliding disks to adjust or fix tubes used to drain the bladder. Patients were randomized into two groups (experimental group [GI]-ISRD vs control group [GII]-CIC). The evaluation was performed at the time of enrollment and 6 months after treatment. Intervention was initiated from the antisepsis of the perineal region and subsequent introduction of the device through the external urethral meatus. The primary outcome was quality of life (QOL). Urinary tract infections (UTIs) episodes, data on urodynamic parameters, adverse effects and number of diapers per day. RESULTS: A total of 177 subjects were analyzed. We found a significant improvement on QOL analysis in the ISRD group (P < .01). ISRD group presented an important reduction (two episodes after ISRD use) on number of UTIs (P < .01) and diaper use, and significant improvement on bladder capacity (80 mL of the average improvement) (P < .01) and compliance (P = .01). Among all registered serious adverse effects, ISRD presented with lower proportion. CONCLUSIONS: The new device has shown to be a safe and promising alternative for adequate emptying of the neurogenic bladder in female patients. Our study has a limitation that is related to a limited period of observation.

Transitioning young adults with neurogenic bladder-Are providers asking too much?

INTRODUCTION: Significant numbers of young adults with chronic health conditions fail to transition. OBJECTIVE: The aim of the study was to evaluate how ready transitioned urologic patients were for that process. Owing to the cognitive impairments frequently seen with spina bifida (SB), it is hypothesized that these individuals will be less prepared to transition their medical care to adult providers compared with their healthy counterparts. METHODS: Participants included consecutive patients in the transitional SB clinic at the study institution and controls (college students without obvious physical disability or interest in healthcare-related fields aged 18-25 years). Both groups were administered the Transition Readiness Assessment Questionnaire (TRAQ) over a nine-month period. Five TRAQ domains assess 20 skills necessary to transition. Likert scale responses range from 1 "no, I do not know how" to 5 "yes, I always do this when I need to" (which the authors considered appropriate for transitioned patients). Demographics and the number of daily medications taken were collected. Patients and healthy controls were compared using (1) total and domain TRAQ scores, (2) the proportion of non-transitioned skills ("1"), and (3) fully transitioned skills ("5"). Non-parametric statistics were used. RESULTS: Forty-three unique SB patients (30.8% shunted, 46.5% female) and 100 controls were enrolled. Patients with SB were older than controls (21 vs 20 years, p < 0.001). There was no gender difference between groups (p = 0.33). Transitioned patients and college students were fully transitioned only in the "Talking with Providers" domain (Figure). College students performed significantly better than patients in the domains of "Appointment Keeping" (p = 0.04) and "Tracking Health Issues" (p = 0.02). Transitioned patients were less likely to be interested in learning how to perform skills in the domains of "Appointment Keeping" and "Tracking Health Issues" (p < 0.001 for both domains). DISCUSSION: The transition readiness of young adults with SB compared to healthy controls and other youths with chronic health conditions is described. The limitations include the small sample size, potentially limiting generalizability, and cross-sectional nature. CONCLUSION: "Transitioned" patients with SB had lower TRAQ scores in some domains compared to healthy college students, who themselves had scores indicating that they were not fully ready for transition. Increased attention to transition readiness in people with SB is necessary, as even healthy young adults struggle with these tasks and are poorly prepared for transition.

Patient Reported Bladder Related Symptoms and Quality of Life after Spinal Cord Injury with Different Bladder Management Strategies.

PURPOSE: Neurogenic bladder significantly impacts individuals after spinal cord injury. We hypothesized that there would be differences in bladder related symptoms and quality of life for 4 common bladder management methods. MATERIALS AND METHODS: In this prospective observational study we measured neurogenic bladder related quality of life after spinal cord injury. Study eligibility included age 18 years or greater and acquired spinal cord injury. Bladder management was grouped as 1) clean intermittent catheterization, 2) an indwelling catheter, 3) surgery (bladder augmentation, a catheterizable channel or urinary diversion) and 4) voiding (a condom catheter, involuntary leaking or volitional voiding). The primary outcomes were the NBSS (Neurogenic Bladder Symptom Score) and the SCI-QoL Difficulties (Spinal Cord Injury Quality of Life Measurement System Bladder Management Difficulties). Secondary outcomes were the NBSS subdomains and satisfaction with urinary function. Multivariable regression was done to establish differences between the groups, separated by level. RESULTS: Of the 1,479 participants enrolled in the study 843 (57%) had paraplegia and 894 (60%) were men. Median age was 44.9 years (IQR 34.4-54.1) and median time from injury was 11 years (IQR 5.1-22.4). Bladder management was clean intermittent catheterization in 754 cases (51%), an indwelling catheter in 271 (18%), surgery in 195 (13%) and voiding in 259 (18%). In regard to primary outcomes, in cases of paraplegia and tetraplegia an indwelling catheter and surgery were associated with fewer urinary symptoms on the NBSS compared to clean intermittent catheterization while voiding was associated with more symptoms. In paraplegia and tetraplegia cases surgery was associated with fewer bladder management difficulties according to the SCI-QoL Difficulties. In regard to secondary outcomes, surgery was associated with improved satisfaction in individuals with paraplegia or tetraplegia. CONCLUSIONS: In individuals with spinal cord injury fewer bladder symptoms were associated with an indwelling catheter and surgery, and worse bladder symptoms were noted in voiding individuals compared to those on clean intermittent catheterization. Satisfaction with the urinary system was improved after surgery compared to clean intermittent catheterization.

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

OBJECTIVE: To describe and compare differences in perception of independence, urinary continence, and quality of life in an adult spina bifida (SB) population. METHODS: We collected data on adult neurogenic bladder patients which included demographics, relevant procedures, and quality of life (QoL) questionnaires. QoL and functional outcomes were assessed using spinal cord independence measure (SCIM) and SF-8 health questionnaire. International consultation of incontinence questionnaire (ICIQ) was used to assess incontinence. Comparisons were drawn between patients who underwent surgical reconstruction and those who did not. Student t-tests were used for comparisons and a P-value <0.05 was considered statistically significant. RESULTS: Fifty-four patients with SB were included. A total of 43% underwent bladder augmentation (BA) and 30% underwent antegrade continence enema (ACE). Patients with BA scored 49 ± 25 on the SCIM survey while those without had higher scores of 68 ± 19 with a P-value of 0.016. This difference remained evident when patients with ACE were excluded. When comparing ICIQ and SF-8, no statistically significant differences were found between those who underwent surgical procedures and those who did not. CONCLUSIONS: Assessing QoL in congenital NGB patients is a complex task. In our cohort, patients who underwent BA and ACE were shown to have decreased SCIM scores. SCIM scores for BA patients were significantly higher in patients who did not receive a BA independent of ACE status. SF-8 and ICIQ scores did not show any statistically significant difference in quality of life survey scores in those who underwent procedures versus those who did not.

Impact on quality of life and sexual satisfaction of continent cystostomy with enterocystoplasty in an adult neurologic population.

AIMS: To evaluate long-term general and urinary quality of life (QOL) and sexual satisfaction in adult neurologic patients undergoing continent cystostomy surgery associated with a bladder enlargement to treat neurogenic lower urinary tract dysfunction. METHODS: Monocentre, retrospective series of adult neurologic patients who underwent continent cystostomy with bladder enlargement and followed-up in the long-term. We assessed during follow-up, urinary and renal function and patients filled QOL questionnaires on general QOL, sexuality and urinary (short form Qualiveen) disability. RESULTS: Fifty-three patients were included and followed-up 77 months on average. Rates of patients' satisfaction, stomal and urethral continences were respectively of 98.7% (n = 51), 94.1% (n = 48), and 80.4% (n = 41). Impact of surgery on general QOL and autonomy were strong and positive (respective mean scores of 4.8 and 4.7 on a scale ranging from 1 to 5). Mean overall urinary Qualiveen QOL score was 0.8 (0.09-2.67) indicating a low negative impact of urinary disability on QOL. In patients <45 years, 52.6% (n = 10) reported a moderate to important improvement of their sexuality after surgery. Renal function remained stable during follow-up. CONCLUSION: In the long-term, continent cystostomy with bladder enlargement provides great satisfaction to almost most patients. It has a strong positive impact on general and specific urinary QOL, patients' autonomy and urinary continence. In young patients a positive impact on sexuality was also noticed. These encouraging data, that need to be confirmed, constitute interesting information to provide to neurologic patients to help them deciding whether they are willing to undergo continent cystostomy surgery.

Patients With Spina Bifida and Their Caregivers' Feelings About Intermittent Bladder Catheterization in Brazil and Germany: A Correlational Study.

A major complication for individuals with spina bifida (SB) is managing their neurogenic bladder. For many, this process evokes negative feelings associated with guilt, dependence, and lack of self-worth. PURPOSE: The aim of the study was to compare feelings that hinder the performing of intermittent bladder catheterization reported by individuals with SB and their families in two countries of different sociocultural characteristics: Brazil and Germany. DESIGN AND METHODS: Quantitative and comparative study with convenience sampling. The sample comprised 200 SB patients and their caregivers, 100 from Brazil and 100 from Germany. FINDINGS: When asked about the existence of negative feelings or ideas that may hinder the performance of key person responsible for IC, 155 (77.5%) participants did not report such feelings. On the other hand, 45 (22.5%) reported emotional difficulties; among these participants, 31 (69%) were Brazilians and 14 (31%) were Germans. CONCLUSIONS AND CLINICAL RELEVANCE: Although emotional factors are important to the adjustment of using IC methods for bladder management, the majority of people with SB and their caregivers seem to report no major emotional difficulties with this process. Yet a considerable group of participants did report such emotional difficulties associated with fear and shame. Knowing more about the factors associated with such negative feelings can facilitate interactions, provide mutual aid, and assist with resolution of practical concerns related to intermittent bladder catheterization.

Identifying and classifying quality of life tools for neurogenic bladder function after spinal cord injury: A systematic review.

OBJECTIVE: To identify and classify quality of life (QoL) tools for assessing the influence of neurogenic bladder after spinal cord injury/disease (SCI). DESIGN: Systematic Review Methods: Medline/Pubmed, CINAHL, and PsycInfo were searched using terms related to SCI, neurogenic bladder and QoL. Studies that assessed the influence neurogenic bladder on QoL (or related construct) in samples consisting of ≥50% individuals with SCI were included. Two independent reviewers screened titles and abstracts of 368 identified references; 118 full-text articles were assessed for eligibility, and 42 studies were included. Two reviewers independently classified outcomes as objective (societal viewpoint) or subjective (patient perspective) using a QoL framework. RESULTS: Ten objective QoL measures were identified, with the Medical Outcomes Short Form (SF-36/SF-12) used most frequently. Fourteen subjective QoL measures were identified; 8 were specific to neurogenic bladder. Psychometric evidence for SCI-specific neurogenic bladder QoL tools was reported for the Quality of Life Index (QLI), Qualiveen, Bladder Complications Scale, Spinal Cord Injury-Quality of Life (SCI-QOL) Bladder Management Difficulties, and the SCI-QOL Bladder Management Difficulties-Short Form. The QLI and Qualiveen showed sensitivity to neurogenic bladder in experimental designs. CONCLUSION: Several objective and subjective tools exist to assess the influence of neurogenic bladder on QoL in SCI. The QLI and Qualiveen, both subjective tools, were the only validated SCI-specific tools that showed sensitivity to neurogenic bladder. Further validation of existing subjective SCI-specific outcomes is needed. Research to validate objective measures of QoL would be useful for informing practice and policy related to resource allocation for bladder care post-SCI.

Long-Term Efficacy and Safety of OnabotulinumtoxinA in Patients with Neurogenic Detrusor Overactivity Who Completed 4 Years of Treatment.

PURPOSE: We assessed the year-to-year consistency of outcomes in patients with urinary incontinence due to neurogenic detrusor overactivity who completed 4 years of onabotulinumtoxinA treatment. MATERIALS AND METHODS: Eligible patients who completed a 52-week phase 3 trial of onabotulinumtoxinA for urinary incontinence could enter a 3-year open label extension study of onabotulinumtoxinA 200 or 300 U administered as needed for symptom control. This analysis focused on 227 patients who completed the 4-year study. Outcomes assessed by year of treatment included mean treatments per year, mean change from baseline at week 6 in urinary incontinence episodes per day and the I-QOL (Incontinence Quality of Life) total summary score, the proportion of patients with 50% or greater and 100% reductions in urinary incontinence episodes per day, duration of effect and adverse events. RESULTS: Patients reported 4.3 urinary incontinence episodes per day at baseline and received 1.4 to 1.5 onabotulinumtoxinA treatments per year. The decrease in urinary incontinence following onabotulinumtoxinA consistently ranged from -3.4 to -3.9 episodes per day across 4 years. A high proportion of patients achieved 50% or greater and 100% urinary incontinence reductions in each year (range 86.6% to 94.1% and 43.6% to 57.4%, respectively). Consistent and clinically relevant improvements in I-QOL scores were observed in each treatment year. The overall median duration of effect of onabotulinumtoxinA was 9.0 months or greater (range 3.0 to 49.2) and 26.0% or more of patients experienced a duration of effect of 12 months or greater. The most common adverse event was urinary tract infection with no increased incidence with time. CONCLUSIONS: Patients with neurogenic detrusor overactivity who completed 4 years of onabotulinumtoxinA treatment experienced a consistent duration of treatment effect and year-to-year improvements in urinary incontinence and quality of life with no new safety signals.

Problematic secondary health conditions among adults with spinal cord injury and its impact on social participation and daily life.

OBJECTIVE: This exploratory study describes the problematic secondary health conditions among adults with a spinal cord injury (SCI) and the impact these health concerns have on social participation and daily life. DESIGN: Cross-sectional survey design. SETTING: A community-based rehabilitation program within the United States. PARTICIPANTS: Fifty-six adults (33 males and 23 females; age 18 to 73 [M = 39.4, SD = 12.7]) with SCI participating in the community-based rehabilitation program. METHODS: Subjects identified the top five problematic secondary health conditions related to his/her SCI, belief about the impact these conditions have on social participation and daily life, and if they believed the secondary health condition(s) were avoidable. RESULTS: The top problematic areas identified were bladder control, pain, bowel control, and pressure ulcers, and 73% felt these problems were unavoidable. In addition, more than 66% had each of these problems continuously during the last 12 months. When examining the impact of the problematic secondary health conditions, 75% identified that the primary problem had a significant impact on social participation and 64% identified it significantly impacted daily life. CONCLUSION: Although the majority of the participants were actively participating in a community-based rehabilitation wellness program, it appears that they thought engagement in social participation and daily life were negatively impacted by the secondary health conditions and unavoidable. The results suggested unfulfilled goals despite the emphasized efforts of medical providers to help manage the secondary conditions. Future research should examine why individuals with SCI still have a difficult time managing secondary health conditions.

Perceived barriers and difficulties of intermittent catheterization: In Korean patients with spinal dysraphism and their parents.

AIMS: Integrating regular intermittent catheterization (IC) into daily life is essential for good medical outcomes in patients with neurogenic bladders. The goal is to identify long-term IC-related barriers, or difficulties in Korean patients with spinal dysraphism and their parents. METHODS: The data were prospectively collected using questionnaires from spinal dysraphism patients from two sources: an online community, and those visiting the outpatient clinic of Seoul National university hospital. The questions included were barriers in general and school life, respectively. Also, an open question was included regarding suggestions for school managers or the government in order to overcome identified IC related difficulties. RESULTS: A total of 20 patients and 40 parents answered the questionnaire. Common barriers found in general life were related to lack of places, time, or helpers to perform IC. Substantial numbers of adolescent patients also complained that IC could not be adequately performed due to problems related to privacy or lack of understanding at school. However, the number and nature of barriers varied according to the developmental stage and school environments. Almost all IC barriers seemed to be significant in adolescence. Some parents requested that the government provide space and broaden insurance coverage of catheters in order to facilitate IC. CONCLUSIONS: Various perceived barriers were identified in those who need IC and differences were demonstrated over time. Both dedicated space and time are issues. In addition, patients may benefit from emotional support and enhanced communication with community agencies and government to resolve the problems related with privacy.

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.

Quality of life after suprapubic catheter placement in patients with neurogenic bladder conditions.

AIMS: To evaluate quality of life in patients with neurogenic bladder (NGB) conditions who have elected to undergo suprapubic catheterization (SPC), as well as assess adverse events (AEs) related to the procedure. METHODS: This is a retrospective review from a database of NGB patients from 1/1/2003 to 6/30/2013. Patients who underwent SPC placement were invited to complete a validated, single item Patient Global Impression of Improvement (PGI-I) questionnaire. Success or positive response was defined as 1 or 2 on a scale of 1-7. All patients were included in the assessment of AEs. RESULTS: Of the 128 patients who underwent SPC, 89 patients (54 female, 35 male) met inclusion criteria. Response rate to the PGI-I questionnaire was 65.2% (58/89). Mean age at the time of SPC placement was 54.4 years (± 14.4). The mean time from SPC placement to PGI-I questionnaire was 48.3 months (Range 4.4-128.4). Overall, success was seen in 49/58 patients (84.5%). Only 5.2% (3/58) patients reported a negative PGI-I (score 5/7). There was an 18.8% rate of short term complications, with the majority of these being classified as Clavien I. There was one Clavien IIIb complication (0.8%), which consisted of a small bowel perforation. CONCLUSIONS: SPC is an effective bladder management in carefully selected NGB patients who have failed other options. Over 80% considered the SPC to have improved their urological quality of life with a mean time to questionnaire of 4 years. Severe AEs are rare, though can be particularly serious in this group of neurologically impaired patients. Neurourol. Urodynam. 35:831-835, 2016. © 2015 Wiley Periodicals, Inc.

Self-cathing experience journal: Enhancing the patient and family experience in clean intermittent catheterization.

OBJECTIVE: This pilot study evaluated the safety, feasibility, and usefulness of the Self-Cathing Experience Journal (SC-EJ), an online resource for patients and families to address issues and stigma surrounding clean intermittent catheterization (CIC). Modeled after previous assessments of the Cardiac and Depression Experience Journals (EJs), this project uniquely included patients and caregivers. We explored whether patients and caregivers would find the SC-EJ helpful in increasing their understanding of CIC, accepting the medical benefits of self-catheterization, improving hopefulness, and diminishing social isolation. METHODS: Patients seen in a tertiary urology clinic were asked to view the SC-EJ for 30 min and rate its safety and efficacy. The cross-sectional sample included 25 families: 17 surveys were completed by the patient and their caregiver, five by the patient only, and three by the caregiver only. Mean patient age was 15.7 ± 5.8 years (range 7-29 years). The patients were 64% female, and 72% used CIC due to neurological diagnoses. RESULTS: Mean overall patient satisfaction with the SC-EJ was moderately high (mean = 5, out of a 7-point Likert scale from 1 = not at all to 7 = extremely). Mean overall caregiver satisfaction was high (mean = 5.55) and was similar to caregiver satisfaction scores recorded in caregivers with children with congenital heart disease and depression (mean = 5.7 and mean = 5.75, respectively). No significant differences were noted in satisfaction between CIC patients and CIC caregivers or among caregivers of the three populations surveyed (CIC, Cardiac, and Depression). CIC patients and caregivers reported that SC-EJ viewing gave them a strong sense that others are facing similar issues (patient mean = 6.15, caregiver mean = 6.21) and that it was helpful to read about other families' CIC experiences (patient mean = 6, caregiver mean = 5.89). DISCUSSION: The SC-EJ appears to be safe, feasible, and useful to patients and families using CIC. Ratings from caregivers of CIC patients were similar to other cohorts of caregivers facing chronic childhood conditions. Despite beliefs that the EJ format best targets adults, high satisfaction ratings among patients suggest that the SC-EJ is acceptable and beneficial to children and adolescents. This web-based intervention can be a helpful clinical supplement in promoting healthy coping skills and a decreased sense of isolation among patients and families facing CIC. The unique integration of real patient and family experiences with accurate and vetted medical knowledge has the potential to enhance resiliency among viewers who use CIC.

[What kind of health information search the spinal cord injured patients from Spain on the internet?]. / ¿Qué información sobre su salud buscan los lesionados medulares Españoles en Internet?

INTRODUCTION: Internet is an alternative for health education to the population. Spinal cord injured individuals usually consult the Internet about their health problems. AIM: To identify the health information sources, the more consulted items and the confidence in Internet information of a group of spinal cord injured individuals from Spain. PATIENTS AND METHODS: A survey to spinal cord injured individuals from Spain was conducted, with a questionnaire in Google Drive. It was accessible with a link in ASPAYM-Asturias web page. The questionnaire included epidemiological data and information about Internet use and confidence in its contents. RESULTS: 121 individuals answered the survey, 64% male, with an average age of 45 years. The predominant aetiology was traumatic (70%) and 72% were paraplegics. 83% prefer to consult health care providers directly. More of 70% of the sample searches health problems on the Internet, mostly web pages in Spanish. The preferred item was 'orthopaedic materials and wheelchairs'. 27% of the sample trusts in the Internet information and 32% don't. CONCLUSIONS: This research provides information about Internet use of spinal cord injured individuals in Spain. Although we have to admit some bias in the study, more than 70% of the sample searches health problems on the Internet, mostly web pages in Spanish. About one in four individuals trust in information from Internet and most of the sample prefers recommendations directly from healthcare professionals.

TITLE: Que informacion sobre su salud buscan los lesionados medulares espanoles en Internet?Introduccion. Internet es una alternativa para la educacion sanitaria en la poblacion. Los lesionados medulares consultan la red sobre cuestiones de su salud. Objetivo. Conocer cuales son las fuentes de informacion, los temas sobre salud mas consultados y la confianza en el material obtenido de la red por un grupo de lesionados medulares espanoles usuarios de Internet. Pacientes y metodos. Realizamos una encuesta a lesionados medulares espanoles mediante un cuestionario en Google Drive. Se accedia a el mediante un enlace en la pagina de ASPAYM-Asturias. El cuestionario incluia datos epidemiologicos y cuestiones sobre Internet, fuentes de informacion y confianza en ellas. Resultados. Contestaron 121 lesionados medulares (el 64%, hombres), con una edad media de 45 anos. La etiologia predominante era la traumatica (70%), y en el 72%, las lesiones eran paraplejias. El 83% prefiere consultar al personal sanitario. Busca en Internet mas del 70% de la muestra, y lo hace en paginas web en espanol. El tema de mayor interes es el material ortopedico. El 27% confia mucho o bastante en la informacion de la red, mientras que el 32% lo hace poco o nada. Conclusiones. Los resultados nos aproximan al uso de Internet que hacen los lesionados medulares espanoles. Asumiendo el sesgo inherente en un estudio de este tipo, mas del 70% de la muestra consulta sobre su salud en la red, sobre todo en paginas web espanolas. El tema mas buscado es 'material ortopedico y sillas de ruedas'. Solo uno de cada cuatro confia en los contenidos de la red, y la mayoria prefiere consultar sus problemas de salud directamente con los profesionales sanitarios.