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.

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.

"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.

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.

Evaluation of the Educational Impact of the Urology Collaborative Online Video Didactics Lecture Series.

OBJECTIVE: To assess the impact of the Urology Collaborative Online Video Didactic (COViD) lecture series series on resident knowledge as a supplement to resident education during the coronavirus disease 2019 pandemic. METHODS: One hundred thirty-nine urology residents were voluntarily recruited from 8 institutions. A 20-question test, based on 5 COViD lectures, was administered before and after watching the lectures. Pre- and posttest scores (percent correct) and score changes (posttest minus pretest score) were assessed considering demographic data and number of lectures watched. Multiple linear regression determined predictors of improved scores. RESULTS: Of residents recruited, 95 and 71 took the pre- and posttests. Median number of lectures watched was 3. There was an overall increase in correct scores from pretest to posttest (45% vs 57%, P < .01). Watching any lectures vs none led to higher posttest scores (60% vs 44%, P < .01) and score changes (+16% vs +1%, P < .01). There was an increase in baseline pretest scores by post-graduate year (PGY) (P < .01); however there were no significant differences in posttest or score changes by PGY. When accounting for lectures watched, PGY, and time between lecture and posttest, being a PGY6 (P = .01) and watching 3-5 lectures (P < .01) had higher overall correct posttest scores. Watching 3-5 lectures led to greater score changes (P < .001-.04). Over 65% of residents stated the COViD lectures had a large or very large impact on their education. CONCLUSIONS: COViD lectures improved overall correct posttest scores and increased knowledge base for all resident levels. Furthermore, lectures largely impacted resident education during the coronavirus disease 2019 pandemic.

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.

Reliable cognitive change following unilateral deep brain stimulation in essential tremor.

Objective: This retrospective analysis assessed regression-based reliable change (RC) of cognition in a sample of essential tremor (ET) patients who underwent unilateral deep brain stimulation of the ventral intermediate nucleus of the thalamus (VIM-DBS).Method: Thirty patients (mean age at pre-evaluation = 70.4 ± 6.3 years) underwent neuropsychological evaluation pre- and post-unilateral VIM-DBS placement (mean time between pre and post-evaluation = 13.1 ± 4.0 months). Paired samples t-tests and RC analyses were employed.Results: No significant within-group differences were observed when cognitive scores were compared between evaluations. The vast majority of patients demonstrated stability across pre-and post-surgical evaluations (i.e. 29 out of 30); however, those with high-risk co-morbid medical conditions may be vulnerable to post-surgical cognitive decline as indicated by RC measures.Conclusions: The use of regression-based RC indices to assess individual cognitive changes between pre and post-surgical evaluations control for systematic and measurement errors that can occur over repeated evaluations, and may be able to identify cognitive changes that evade detection in traditional within-group comparisons.

The Northwestern University Novel Urology Residency Curriculum: Updated Outcomes from a 13-Year Experience with Flexible Residency Training and Electives.

INTRODUCTION: We evaluated educational outcomes and satisfaction following institution of a novel, flexible and urology-driven resident curriculum. METHODS: A new urology resident curriculum was instituted at Northwestern University in 2006. Rotation schedules and resident electives were recorded annually. Operative case logs and American Urological Association In-Service Examination scores were collected prospectively. Residents and faculty rated satisfaction with the residency program on a 5-point Likert scale from "poor" to "outstanding." Differences in cases logged, In-Service Examination scores and satisfaction ratings under the new and prior curricula were compared. RESULTS: Curriculum changes included full 5-year urology oversight of the residency curriculum by the program director, 8 months of urology rotations in the first postgraduate year and 2 months of general surgery during the second postgraduate year. General surgery rotations were modified annually based on educational rationale and feedback. Cases logged per resident and In-Service Examination scores were comparable between old and new curricula groups. All residents matriculating under the new curriculum took and passed their written boards. The percentage of faculty and residents describing the program as "outstanding" increased from 50% in 2004‒2005 to 82% in 2017‒2018. Program satisfaction increased significantly when comparing the first and last 6 years (percent rating "outstanding": 56.1±2.1% vs 71.6±10.0%, p=0.028). CONCLUSIONS: After 13 years with the novel curriculum, resident case numbers and In-Service Examination scores remained similar while faculty/resident satisfaction increased. Direct control of general surgery rotations enabled adjustments based on educational rationale. These results demonstrate that a urology-directed and flexible residency program can be instituted without compromising learner outcomes.

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.

Management of Pelvic Organ Prolapse in the Adult Congenital Genitourinary Patient.

OBJECTIVES: To assess and present our experience with the management and outcomes of female pelvic organ prolapse in the adult congenital genitourinary patient population. METHODS: Retrospective review of our adult congenital GU patients with spina bifida with a documented Pelvic Organ Prolapse Quantification exam (POP-Q) from 2006 - 2021 was undertaken. Spina bifida lesion level, bladder management method, prolapse stage and component, and obstetric history were reviewed. Outcomes of treated patients are from most recent follow up. RESULTS: 37 congenital GU patients were identified. 26 (70%) were nulliparous with many showing advanced prolapse, defined as stage 2 or greater. By POP-Q, only 22% were stage 0, indicating no prolapse. 68% had advanced prolapse, with one case of complete procidentia despite no pregnancy history. The dominant prolapse compartment in advanced prolapse patients regardless of parity was apical, or cervical (47%). 16 had symptomatic prolapse, most with vaginal bulge or noticing bulge with catheterization. 6 patients underwent surgery with 2 vaginal hysterectomy and uterosacral suspensions and 1 sacrocolpopexy with mesh. Due to elongated cervix with protrusion, 3 patients underwent cervical shortening as their primary prolapse intervention. 4 of the patients saw a decrease in POP-Q score post-operatively with 2 patients still pending follow-up. CONCLUSIONS: Congenital GU patients may have more advanced prolapse at younger ages and nulliparity and are frequently apical dominant. A variety of surgical options can provide meaningful improvement in the symptomatic patient.

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.

Long-term Kidney Outcomes in Exstrophy-Epispadias Complex: How Patients Present as Adults.

OBJECTIVE: To characterize kidney function in patients with exstrophy-epispadias complex (EEC) at time of presentation for adult urologic care. MATERIALS AND METHODS: This was a retrospective analysis of 23 patients (ages 18-57) with EEC who presented to a single tertiary care center from 2001-2020. Kidney function was evaluated based on calculated eGFR and presence of hydronephrosis on imaging. UDS data was used to evaluate the bladder. RESULTS: Patients had undergone a variety of different surgical techniques for exstrophy or epispadias repair prior to presentation to an adult urologist. We found that 10 of the 23 patients had evidence of CKD Stage II or higher at the time of presentation and 7 patients had evidence of hydronephrosis on imaging. There was urodynamics data available for 14 patients, of which 8 patients showed poor (≤15 ml/cmH2O) or intermediate (15-20 ml/cmH2O) bladder compliance. CONCLUSION: In conclusion, some patients with EEC have evidence of kidney dysfunction at time of presentation to an adult urologist. It is important to consider this when caring for patients with EEC as adults.

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.

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.

The Impact of Stricter Guidelines on Post-Interview Contact, Restricted Interview Topics and Differences by Gender in the Urology Match.

INTRODUCTION: In response to studies showing high rates of program initiated post-interview contact and the use of discriminatory personal questions on topics such as age, intent for children, and religion or political preferences during interviews the Society of Academic Urologists and the American Urological Association published revised guidelines for the 2020 Urology Match. This study assessed the impact of these changes on the applicant experience and prevalence of restricted questions. METHODS: A total of 361 applicants to a single urology residency program were sent an anonymous 20-question survey about post-interview program contact and restricted interview questions. The 20-question survey used branching logic with followup questions based on initial responses. RESULTS: A total of 100 survey responses were received. Of respondents 2% reported unsolicited program initiated post-interview contact and no Match commitments were reported. Among respondents 36% felt they were asked an inappropriate question during an interview, female applicants more commonly than males (50% vs 25%, p=0.01). When asked about specific restricted topics, 98% of respondents reported encountering at least 1. Of the restricted topics asked women more frequently encountered questions about their intent for children (27.3% vs 10.7%, p=0.032) and other programs to which they applied (100% vs 91%, p=0.04). CONCLUSIONS: Following changes to the guidelines for the 2020 Urology Match unsolicited program initiated post-interview contact rates were lower than reported in previous studies. However, applicants continue to encounter restricted topics, and females disproportionately so, demonstrating that continued work must be done to decrease discrimination and bias throughout the interview process.