Quality of Life and Bladder Symptoms in Adolescents and Young Adults With Spina Bifida Who Catheterize via Urethra vs Catheterizable Channel.

PURPOSE: We sought to assess associations between health-related quality of life (QOL), bladder-related QOL, bladder symptoms, and bladder catheterization route among adolescents and young adults with spina bifida. MATERIALS AND METHODS: Clinical questionnaires administered to individuals ≥ 12 years old requiring catheterization between June 2019 to March 2020 in a spina bifida center were retrospectively analyzed. Questionnaires were completed in English or Spanish independently or with caregiver assistance. Medical records were reviewed for demographic and clinical characteristics. Primary exposure was catheterization route (urethra or channel). Primary outcome was health-related QOL, measured by Patient-Reported Outcomes Measurement Information System Pediatric Global Health 7 (PGH-7). Secondary outcomes were bladder-related QOL and bladder symptoms, measured by Neurogenic Bladder Symptom Score (NBSS). Nested, multivariable linear regression models assessed associations between catheterization route and questionnaire scores. RESULTS: Of 162 patients requiring catheterization, 146 completed both the PGH-7 and NBSS and were included. Seventy-three percent were catheterized via urethra and 27% via channel. Median age was 17.5 years (range 12-31), 58% of patients were female, and 80% had myelomeningocele. Urinary incontinence was more common among those who catheterized via urethra (60%) compared to channel (33%). On adjusted analyses, catheterization route was not significantly associated with PGH-7 or NBSS bladder-related QOL scores. More bladder symptoms were associated with worse bladder-related QOL. Patients who catheterized via channel had fewer bladder symptoms than those who catheterized via urethra. CONCLUSIONS: Catheterization route was not significantly associated with QOL. Though catheterization via channel was associated with fewer bladder symptoms, only degree of current bladder symptoms was significantly associated with bladder-related QOL.

Male perspectives on clinical communication about sexual health in spina bifida.

AIM: To assess perspectives on clinical communication about sexual health in young adult males with spina bifida. METHOD: Semi-structured interviews were conducted between February and May 2021 with males at least 18 years of age with spina bifida to assess their perspectives and experiences of sexual health communication with clinicians. Demographic and clinical characteristics were obtained from chart review and a survey of patients. Interviews were transcribed verbatim, and conventional content analysis was used for transcript coding. RESULTS: Twenty individuals participated with a median age of 22 years 6 months (range 18-29 years). Sixteen had myelomeningocele. Most identified as heterosexual (n = 17) and not sexually active (n = 13). Barriers and facilitators of successful interactions were identified. Barriers for participants included general discomfort with talking about sex and variability in individual preferences for how conversations occur. Facilitators included participants' comfort with their urologist and discussing sex in relation to disability. Suggestions for improving discussions included (1) notifying individuals that discussion about sex will occur before clinic visits; (2) creating space for discussions; (3) respecting individuals' readiness to discuss; and (4) making discussions disability specific. INTERPRETATION: Young adult males with spina bifida are interested in discussing sexual health with their clinicians. Great variability exists about conversation preferences, emphasizing the need to individualize clinical communication about sex. Current health guidelines for males may not be in line with individuals' wishes. WHAT THIS PAPER ADDS: Great variability exists in individual preference around sexual health communication. Patient-level barriers hinder successful conversations about sex. Individuals have great insight into how conversations about sex can be improved.

"I Just Haven't Done Any of That": Applicability of the International Index of Erectile Function in Young Men With Spina Bifida.

PURPOSE: We evaluate the applicability of the International Index of Erectile Function in young men with spina bifida and identify spina bifida-specific sexual experiences not captured by this measure. MATERIALS AND METHODS: Semistructured interviews were conducted between February 2021 and May 2021 with men ≥18 years of age with spina bifida. The International Index of Erectile Function was completed by participants, and perspectives on its applicability were discussed. Participant experiences and perspectives around sexual health were discussed to identify aspects of the sexual experience not well captured by the International Index of Erectile Function. Demographic and clinical characteristics were obtained from a patient survey and chart review. Conventional content analysis framework was used for transcript coding. RESULTS: Of 30 eligible patients approached, 20 participated. Median age was 22.5 years (range 18-29), and 80% had myelomeningocele. Most identified as heterosexual (17/20, 85%), were not in a relationship (14/20, 70%), and were not currently sexually active (13/20, 65%). Some perceived the International Index of Erectile Function as applicable, while others reported it was not, as they do not define themselves as sexually active. Aspects of the sexual experience not captured by the International Index of Erectile Function included (1) lack of control over sexual function, (2) poor lower body sensation, (3) urinary incontinence, (4) spina bifida-specific physical limitations, and (5) psychosocial barriers. Participant suggestions for improving the International Index of Erectile Function to increase its applicability were identified. CONCLUSIONS: While many perceived the International Index of Erectile Function as applicable, the measure inadequately captures the diverse sexual experiences of young men with spina bifida. Disease-specific instruments to evaluate sexual health are needed in this population.

Complications in adulthood for patients with paediatric genitourinary reconstruction.

BACKGROUND: Caring for adults with prior paediatric genitourinary reconstruction remains a challenge for adult providers. Reconstructions typically have occurred decades before; surgical records are not always available and patients and families may be unable to convey procedures performed. Spina bifida (SB) patients are vulnerable to cognitive decline which may compound these challenges. Changes in patient body habitus and loss of function may contribute to problems with previous reconstructions. METHODS: This is a non-systematic review of the literature and represents expert opinion where data are non-existent. This review focuses on the evaluation and management of complications arising from genitourinary reconstruction in congenital neurogenic bladder patients. RESULTS: Common complications experienced by congenital neurogenic bladder patients include recurrent urinary tract infection, incontinence of catheterizable channel and urinary reservoir as well as malignancy as this population ages. Preservation of renal function and prevention of urinary tract infection while optimizing continence are essential guiding principles in the care of these patients. Many of the recommendations, however, are gleaned from available data in the adult spinal cord patient (a more commonly studied population) or the paediatric urologic literature due to limited studies in adult management of such patients. CONCLUSION: Close follow-up and vigilance is warranted to monitor for infectious, mechanical and malignant complications while optimizing preservation of the upper urinary tracts and patient quality of life.

Revisiting the penoscrotal approach to artificial urinary sphincter surgery: how does it compare to a perineal incision for initial implantation?

PURPOSE: Artificial urinary sphincters (AUS) remain the gold standard to treat male stress urinary incontinence. AUS implantation can be performed through a penoscrotal or perineal incision depending on surgeon preference. METHODS: The present study compares initial AUS implantation through two surgical approaches focusing on outcomes of continence and revision. All AUS implanted at an academic medical center between 2000 and 2018 were retrospectively reviewed. RESULTS: A total of 225 AUS implantations were identified, of which, 114 patients who underwent virgin AUS placement were included in the study with a mean follow-up of 28.5 months. A total of 68 patients (59.6%) had AUS placement through penoscrotal incision; while, 46 (40.4%) had a perineal incision. While operative time was significantly shorter for penoscrotal placement (98.6 min vs. 136.3 min, p = 0.001), there were no significant differences in continence rates between either surgical approach with 76.5% socially continent defined as using zero to less than 1 pad per day (safety pad). The overall rate of device erosion or infection was not significantly different between groups. However, the rate of revision or replacement was significantly higher in the perineal group (26.1% v. 8.8%; p = 0.01). On multivariate analysis, the penoscrotal incision predicted a lower rate of device revision (p = 0.01). CONCLUSIONS: The penoscrotal approach of AUS placement is associated with shorter operative time. While we observed a lower revision rate compared to the perineal approach, there were equivalent continence outcomes.

Improving Gender Diversity in Urologic Residency Training.

PURPOSE OF REVIEW: Women remain underrepresented in urology despite being well-represented in medicine overall. A more diverse urological workforce has the potential to lead to better health outcomes for patients. This paper presents an overview of barriers faced by women in urology at the student, resident, and attending level and potential solutions to mitigate these issues. RECENT FINDINGS: Although the number of women entering urology has increased since the first woman became a board-certified urologist in 1962, women still are underrepresented, advance more slowly, and hold only a small percentage of leadership positions. Women in urology and surgical fields in general face numerous challenges and obstacles which can be improved to bring and keep more women in the field of urology. Recent efforts by both academic urologists and trainees themselves offer hope for change. Women in urology face challenges in the field which include more limited mentorship opportunities, harassment and bias, and 'pigeonholing'. Recent efforts by both academic urologists and trainees themselves offer hope for change to attract and keep more women in the field. These efforts include the American Urological Association's public commitment to advocating for and fostering a diverse and inclusive environment within urology. A more diverse urological workforce has the potential to lead to better health outcomes for patients, particularly in those populations where access to urological care may be limited.

Factors Associated With Implantable Pulse Generator Site Pain: A Multicenter Cross-Sectional Study.

OBJECTIVES: Implantable pulse generator (IPG) site pain following neuromodulation procedures is a recognized complication. The site of the IPG placement varies depending on the neuromodulation type and physician preference. The incidence of IPG site pain as a function of the site of IPG implantation has not been studied systematically. MATERIALS AND METHODS: We performed a multicenter cross-sectional survey of the incidence, severity, and quality of IPG site pain, location of the IPG, the pain management needs, functional impairment, and cosmetic appearance related to the IPG placement. Contingency table analysis was conducted for categorical variables, and logistic regression analysis and linear regression model was used. RESULTS: The survey response rate was 60.5% (n = 510). Overall, 31.0% of patients reported pain at the IPG site in the last 72 hours with 31.4% reporting moderate to severe pain and 7.6% reporting severe pain. Older age was inversely associated with IPG-related pain (OR = 0.97, 95% CI = 0.96-0.99, p = 0.001). IPG implantation site did not have a statistically significant interaction with IPG site pain (p > 0.05). The most important factor for IPG site-associated pain was having a spinal cord stimulator implanted as compared to a deep brain stimulator, or sacral nerve stimulator. Most subjects reported no functional impairment related to IPG site pain (91%), found the IPG site pain as expected (80%), and found IPG site cosmetic appearance as expected (96%). CONCLUSIONS: The incidence of IPG site pain is an important complication of invasive neuromodulation. The anatomic location of the IPG placement does not appear to affect the incidence or severity of IPG site pain. However, the presence of a pre-implant chronic pain disorder does appear to affect the frequency and severity of IPG site pain.

Urologic provider experiences in transitioning spina bifida patients from pediatric to adult care.

PURPOSE: The lack of precedent in transitioning from pediatric to adult care poses a challenge to providers for patients with spina bifida (SB). The purpose of this study was to summarize perceptions about best practices for the care of adult spina bifida patients. MATERIALS AND METHODS: A national survey was electronically distributed to 174 urologists who are current members of the Spina Bifida Association Network and AUA Working Group on Urologic Congenitalism. De-identified voluntary responses were assessed for implementation of and barriers to interdisciplinary adult SB clinics, continuity of care, and practices for transitioning from pediatric to adult care. RESULTS: The response rate was 40% with urologists practicing pediatrics, genitourinary reconstruction, female pelvic medicine and general urology. Patients undergoing transition or who have transitioned were seen in a multidisciplinary clinic (14%), regular adult clinic (34%), combined adult-pediatric multidisciplinary care (20%), or pediatric multidisciplinary clinic (28%). A majority believed transitioning to adult care should occur at 18 (24%) or 21 years (22%). In the absence of acute changes, providers followed adult SB patients annually with upper tract imaging (typically renal ultrasound) and serum creatinine. Acute urologic changes were preferentially managed with urodynamic testing and cystoscopy. Providers identified a need for multidisciplinary care in adult life, with neurosurgery/neurology (87%), social work (84%), and orthopedics (73%). CONCLUSIONS: Potential solutions to improve the urologic care of this population suggest additional national provider resources, standardized guidelines, multidisciplinary collaboration, access to care, and an advanced-training pathway to improve care of adult patients with spina bifida.

Surveillance and management of urologic complications after spinal cord injury.

PURPOSE: Neurogenic bladder due to spinal cord injury has significant consequences for patients' health and quality of life. Regular surveillance is required to assess the status of the upper and lower urinary lower urinary tracts and prevent their deterioration. In this review, we examine surveillance techniques in neurogenic bladder, describe common complications of this disease, and address strategies for their management. METHODS: This work represents the efforts of SIU-ICUD joint consultation on Urologic Management of the Spinal Cord injury. For this specific topic, a workgroup was formed and comprehensive literature search of English language manuscripts regarding neurogenic bladder management was performed using key words of neurogenic bladder. Articles were compiled, and recommendations in the chapter are based on group discussion and follow the Oxford Centre for Evidence-based Medicine system for Levels of Evidence (LOEs) and Grades of Recommendation (GORs). RESULTS: At a minimum, patients should undergo an annual history and physical examination, renal functional testing (e.g., serum creatinine), and upper tract imaging (e.g., renal ultrasonography). The existing evidence does not support the use of other modalities, such as cystoscopy or urodynamics, for routine surveillance. Urologic complications in neurogenic bladder patients are common and often more complex than in the general population. CONCLUSIONS: There is a shortage of high-quality evidence to support any particular neurogenic bladder surveillance protocol. However, there is consensus regarding certain aspects of regular genitourinary system evaluation in these patients. Proper surveillance allows the clinician to avoid or address common urological complications, and to guide, alter, or maintain appropriate therapeutic regimens for individual patients.

Prolapse repair with and without apical resuspension-Practice patterns among certifying American urologists.

AIMS: To examine surgeon characteristics in certifying urologists performing prolapse surgeries. Anterior compartment prolapse is often associated with apical prolapse, with high rates of recurrence when anterior repair is performed without apical resuspension. METHODS: Six-month case log data of certifying urologists between 2003 and 2013 was obtained from the American Board of Urology (ABU). Cases with a CPT code for common prolapse repairs in females ≥18 years were analyzed. RESULTS: Among 2,588 urologists logging at least one prolapse surgery and a total of 30,983 surgeries, 320 (1.0% of all cases) uterosacral ligament suspension, 3,673 (11.9%) sacrospinous ligament suspension, and 2,618 (8.4%) abdominal sacrocolpopexy were identified. The remaining 14,585 cases were logged as anterior repair. 54.7% of anterior repairs did not include apical suspension. The proportion of anterior repairs without apical suspension has decreased from 77.7% in 2004 to 41.4% in 2012 (P < 0.001). Female subspecialists before 2011 performed anterior repair without apical suspension in 58.5%, versus 70.3% by all others. Since 2011 there has been a decrease in number of anterior repairs without apical suspension, notably in those applying for Female Pelvic Medicine and Reconstructive Surgery (FPMRS) certification (17.1% vs. 30.7% by all other urologists, P < 0.001); nonacademically affiliated urologists are 2.1 times more likely to report anterior repair without apical suspension than academically affiliated colleagues (P < 0.001). CONCLUSIONS: The proportion of prolapse repairs reported as anterior repairs without apical suspension is decreasing, although it remains a substantial portion. Recent log year, FPMRS, and academic affiliation were associated with prolapse repairs addressing apical support. Neurourol. Urodynam. 36:344-348, 2017. © 2015 Wiley Periodicals, Inc.

Disparities in female urologic case distribution with new subspecialty certification and surgeon gender.

AIMS: To examine surgical case volume characteristics in certifying urologists associated with common female urologic procedures to evaluate the practice patterns, given the recent establishment of subspecialty certification in Female Pelvic Medicine and Reconstructive Surgery (FPMRS) and changes in urologist gender composition. METHODS: Six-month case log data of certifying urologists (2003-2013) was obtained from the American Board of Urology (ABU). We examined case logs for 26 CPT codes for common female urologic procedures focused on four procedure groups: incontinence, prolapse, vesicovaginal fistula (VVF), and revision/removal of vaginal mesh/graft. RESULTS: Among 4802 urologists logging at least one female urology case, 43,949 (55.6% of all cases) incontinence, 30,983 (39.2%) prolapse, 451 (0.6%) VVF, and 3643 (4.6%) revision of mesh/graft surgeries were identified. While 90.8% logging at least one female CPT code were men, women surgeons (9.2%) accounted for a disproportionate volume (22.6%) of cases. With initiation of the FPMRS subspecialty certification in 2011, 225 FPMRS candidates (out of 1716 certifying urologists) were identified, compared to 367 (out of 3828 certifying urologists) female subspecialists prior to 2011. FPMRS accounted for 56.7% of prolapse, 62.9% VVF, 59.0% mesh/graft revisions, and 41.9% of incontinence surgeries, compared to female specialists before 2011 (39.1%, 42.4%, 41.5%, and 21.6% respectively (all P < 0.001)). CONCLUSIONS: A growing proportion of female urologic cases are performed by female subspecialists, with a significant increase since initiation of FPMRS subspecialty certification. Women surgeons account for a disproportionate volume of these cases despite remaining a minority of certifying urologists and female subspecialists. Neurourol. Urodynam. 36:399-403, 2017. © 2015 Wiley Periodicals, Inc.

Objective features of subjective cognitive decline in a United States national database.

INTRODUCTION: Functional and cognitive features of subjective cognitive decline (SCD) were identified in a longitudinal database from the National Alzheimer's Coordinating Center. METHODS: Cognitively normal older adults with (SCD+) and without (SCD-) self-reported memory complaints (N = 3915) were compared on (1) baseline Functional Assessment Questionnaire ratings, (2) baseline scores and longitudinal rate of change estimates from nine neuropsychological tests, and (3) final clinical diagnoses. RESULTS: SCD+ had higher baseline ratings of functional impairment, reduced episodic memory practice effects and poorer performance on neuropsychological tests of psychomotor speed and language, and higher frequencies of mild cognitive impairment and dementia diagnoses at the end of follow-up compared with the SCD-group. DISCUSSION: Subtle clinical features of SCD identified in this large cohort are difficult to detect at the individual level. More sensitive tests are needed to identify those with SCD who are vulnerable to cognitive decline and dementia.

Use of Bowel in Reconstructive Urology: What a Colorectal Surgeon Should Know.

Urologists routinely use bowel in the reconstruction of the urinary tract. With an increasing prevalence of urinary diversions, it is important for surgeons to have a basic understanding of varied use and configuration of bowel segments in urinary tract reconstruction that may be encountered during abdominal surgery. The aim of this review article is to provide an overview of the various reconstructive urological surgeries requiring bowel and to guide physicians on how to manage these patients with urinary diversions.

Association Between Quality of Life and Neurogenic Bowel Symptoms by Bowel Management Program in Spina Bifida.

OBJECTIVE: To compare differences in bowel-specific quality of life (QOL), overall qQOL, and neurogenic bowel dysfunction (NBD) severity by bowel management program in patients with spina bifida (SB). METHODS: We performed a retrospective cross-sectional study of patients ≥12 years old at our multidisciplinary SB center who completed both a modified Peristeen NBD questionnaire (assessing bowel symptom severity and bowel-specific QOL) and the Patient-Reported Outcomes Measurement Information System Pediatric Global Health questionnaire (assessing overall QOL). Nested, multivariable models were fit for associations between outcomes and bowel management program (enemas, conservative management, and none). RESULTS: A total of 173 patients, 56.1% female and 64.6% with myelomeningocele, were included in our analysis. Median age was 18.2 years old. Patients reported using enemas (n = 42), conservative management (n = 63), and no bowel program (n = 68). When adjusting for covariates, there was no significant association between bowel-specific QOL nor overall QOL across bowel management programs. However, the use of conservative management compared to enemas was associated with worse bowel symptoms severity (adjusted beta=2.58, 95%CI=[0.09,5.06]). Additionally, greater bowel symptom severity was significantly associated with lower overall QOL (adjusted beta=-0.33, 95%CI=[-0.57,-0.10]). CONCLUSION: NBD symptom severity in SB is more strongly associated with QOL than the individual bowel program being utilized. Our findings suggest that different degrees of NBD require different invasiveness of bowel programs, but it is the outcome of the bowel management program and not the specific program itself that is most associated with QOL.

Gender Disparities and Differences Among Urologists Included in Top Doctor Lists.

OBJECTIVE: To understand gender trends among urologists included in "Top Doctor" lists as more women practice urology, we (1) Evaluated whether Top Doctor lists reflect a contemporary distribution of urologists by gender; (2) Describe regional differences in gender composition of lists; (3) Report similarities and differences among men and women Top Doctors. METHODS: All urologists in regional Top Doctor Castle Connolly lists published in magazines between January 1, 2020 and June 22, 2021 were included. Physician attributes were abstracted. American Urological Association (AUA) census data was used to compare the number of men and women Top Doctor urologists to the number of practicing men and women urologists within each list's zip codes. Log odds ratios (OR) and (95% confidence intervals) were used to compare likelihood of list inclusion by gender overall and by region. RESULTS: Four hundred and ninety-four Top Doctor urologists from 25 lists were analyzed, of which 42 (8.50%) were women. Women urologists comprised 0%-27.8% of each list, with 7 lists (28.0%) including zero women urologists. Using AUA census data, OR for list inclusion of men urologists compared to women was 1.31 (1.01, 1.70) overall, with OR = 0.78 (0.36, 1.72) in the West, OR = 1.39 (1.03, 1.89) South, OR = 1.46 (0.8, 2.67) Northeast, OR = 1.90 (0.50, 7.18) Midwest. Women top urologists completed fellowship more often than men (66.7%, 55.1%) and were significantly more likely to complete female pelvic medicine and reconstructive surgery (FPMRS) fellowship (P <.001). CONCLUSION: Men urologists were significantly more likely to be included in Top Doctor lists than women urologists. Top women urologists were significantly more likely to complete FPMRS fellowship.

Revisions of mid urethral slings can be accomplished in the office.

PURPOSE: Mid urethral slings occasionally require revision for obstructive voiding symptoms or vaginal extrusion. Our approach has been to offer revision in office or resection done under local anesthesia when the patient is agreeable and deemed an appropriate candidate. The results and complications of these procedures are presented. MATERIALS AND METHODS: We retrospectively reviewed the charts of patients from January 2003 to October 2010 to determine the subset with mid urethral sling insertion who subsequently underwent revision in the office or operating room, as identified through the Northwestern Medical Enterprise Data Warehouse. The CPT code for female sling insertion (57288) or revision/removal (57287) was used. RESULTS: A total of 41 revisions were performed in 28 of the 118 patients (23.7%) who underwent synthetic sling insertion. Reasons for adjustment were an intravesical sling (1 operating room case), extruded vaginal mesh (7 operating room and 19 office) and obstructive voiding symptoms (7 operating room and 7 office). Obstructive voiding symptoms in 6 of 7 operating room and 6 of 7 office patients improved immediately after sling release. There were no complications in either group but 3 office patients required repeat revision in the operating room due to inability to tolerate the procedure in 2 and to nonrelief of symptoms in 1. A total of 13 operating room adjustments were made according to surgeon preference while 2 patients elected the operating room, although adjustment in office was offered. CONCLUSIONS: Sling adjustment due to vaginal mesh extrusion or obstructive voiding symptoms can be successfully performed in the office with good result. When greater adjustment is needed, the operating room may be preferable. Surgeons should make these decisions based on their comfort level and patient preference.

Chemodenervation in Urology.

Onabotulinumtoxin A is an effective therapeutic tool for urologic treatment. The toxin exerts multiple effects in the urinary tract system, which contributes to its utility. The toxin can be used to alleviate a variety of pathologic conditions if administered in the appropriate patient population.

Neuropsychological profile associated with an alpha-synuclein gene (SNCA) duplication.

Objective: The alpha-synuclein gene (SNCA) is implicated in both Parkinson's disease (PD) and dementia with Lewy bodies (DLB). The purpose of this case study was to describe the neuropsychological profile, clinical trajectory, and treatment course of an individual with a known SNCA gene duplication who was followed over the course of three years. Methods: The patient was a healthy man who developed olfactory changes in early adulthood followed by parkinsonism and cognitive concerns around age 40. He underwent serial neurologic and neuropsychological evaluations and neuroimaging, as well as genetic testing for PD gene mutations. He consented to share his medical information to increase awareness of his condition. Results: Initial neuropsychological evaluation (age 44) revealed mild cognitive impairment primarily affecting executive and frontal/subcortical functions. Follow-up evaluations showed rapid cognitive decline that far surpassed the patient's Parkinsonism, which responded well to carbidopa-levodopa. As symptoms progressed, he also developed features characteristic of DLB, including cognitive fluctuations, rapid eye movement sleep behavior disorder, and visual hallucinations. Conclusion: SNCA gene duplication has classically been associated with a slowly progressive syndrome closely resembling idiopathic PD, but less frequently it can cause rapidly progressive dementia. This case study is the first to describe this rare phenotype in terms of its full neuropsychological profile and trajectory. The case highlights the value of a transdisciplinary evaluation and treatment and brings up important ethical and practical issues that should be considered when working with patients who have suspected or known genetic disorders.