ESPU Meeting on Friday 10, June 2022, 14:20 - 15:00
14:20 - 14:23
Michelle SOOHOO 1, Zoë BAKER 1, Yuding WANG 1, Lynn KYSH 2, Hannah DILLON 1, Zorash MONTANO 3, Arthi HANNALLAH 1, Joan KO 1 and Evalynn VASQUEZ 1
1) Children's Hospital Los Angeles, Division of Urology, Los Angeles, USA - 2) Children's Hospital Los Angeles, Institute for Nursing and Interprofessional Research, Los Angeles, USA - 3) Phoenix Children's Hospital, Psychology, Phoenix, USA
The exstrophy-epispadias complex (EEC) is a collection of rare congenital conditions affecting the urinary system. Currently there is not a clear consensus on the psychosocial functioning, mental health (MH), or quality of life (QOL) of individuals with EEC. The aim of this scoping review is to synthesize literature related to the mental health status, psychosocial functioning, and QOL of individuals with EEC across the life course.
PATIENTS AND METHODS
Databases including PubMed, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, ERIC, and Google Scholar were searched from inception using preidentified key terms. Two independent reviewers performed abstract screening of 5,431 articles, followed by full-text review of 245 articles. All articles including primary analysis on the psychosocial functioning, MH status, or QOL of individuals with EEC were included, and recurring themes were identified.
66 articles were included in this review, comprising results from 2,148 unique patients. Findings suggest that MH status and QOL change across the life course in individuals with EEC. Children with EEC demonstrate externalizing behaviors, while adolescents and adults with EEC demonstrate higher levels of internalizing behaviors and psychological distress, particularly anxiety. Additionally, children appear to demonstrate improved QOL after surgery to improve continence. While overall QOL is comparable to the general population, adolescents and adults experience lower QOL in the areas of self-care and general health.
While many individuals with EEC experience QOL that is equal to that of the general population, incontinence, concerns about genital appearance, and anxiety surrounding the condition affect MH, psychosocial functioning, and HRQOL across the life course.
14:23 - 14:26
Nora HANEY, Taylor KOHN, Chad CRIGGER, Tamir SHOLKLAPPER, Heather DICARLO and John P GEARHART
Johns Hopkins Hospital, Urology, Baltimore, USA
Bladder exstrophy (BE), cloacal exstrophy (CE), and epispadias (E) are variants of the exstrophy-epispadias complex (EEC). These children require high doses of opioids and benzodiazepines to achieve pain management and immobilization for a lifetime of invasive surgeries. It is thus hypothesized that these children would be sensitized to these medications as adults. Therefore, the objective of this study was to identify incidence of opiate and benzodiazepine use in adult patients with EEC.
MATERIAL AND METHODS
The TriNetX Diamond network database was queried: a US health research network consisting of 190 million patients from 2009-2021. Incidence of prescriptions for BE (ICD10 Q64.10), CE (Q64.12), and E (Q64.0) aged 18-60 was calculated.
A total of 1805 patients with BE, 332 with CE, and 429 with E were identified. Of these, 57.7% of BE, 55.7% of CE, and 40.8% of E had received any opioid prescription (Table). E had a significantly lower likelihood than BE or CE of receiving opioids (p<0.0001, p<0.0001).
Benzodiazepines were prescribed in 25% of BE, 30.7% of CE, and 18.6% of E. CE had a higher likelihood of benzodiazepines than both BE and E (p=0.0344, p=0.0002, respectively). E group had the lowest likelihood of benzodiazepine prescription (p=0.0055 when compared to BE).
CE was most likely to receive both opioid and benzodiazepine prescriptions (25.3%), followed by E (13.5%) and BE (5.2%) (p<0.001). Older age was associated with higher likelihood of opioid or benzodiazepine prescriptions in BE (p<0.001) and CE (p=0.0057).
Across the EEC spectrum, patients with the most severe anomalies of CE were more likely to have been prescribed opioids and benzodiazepines as adults.
14:26 - 14:29
Emma VAN DEN EEDE 1, Mira STERCKX 2, Kato VANGELABBEEK 2, Charlotte DUNFORD 3, Anthony NOAH 3, Dan WOOD 3 and Gunter DE WIN 4
1) UZA Edegem, Gynaecology, Dendermonde, BELGIUM - 2) UZA Edegem, Internal medicine, Edegem, BELGIUM - 3) UCLH London, Urology, London, UNITED KINGDOM - 4) UZA Edegem, Urology, Edegem, BELGIUM
BEEC includes a spectrum of congenital malformations ranging from isolated epispadias to a bladder exstrophy. The aim of this observational study was to assess the sexual, continence and fertility outcomes in adult life.
MATERIAL AND METHODS
63 patients (18-45 years) were sent a validated series of questionnaires. Data from their medical files and the questionnaire responses were paired using an anonymous subject number and put into an Excel file for descriptive representation. By using validated questionnaires we were able to compare some results to the original validation studies.
22 men and 8 women completed the questionnaire. All but 2 were sexually active. Sexual satisfaction is impaired in men due to problems with erections, ejaculation, condom usage and embarrassment. In females problems dyspareunia and reaching orgasm are mentioned. 30% report depressive feelings.
90% of patients void via catheterization. This leads to complications such as foul odors, infection and sexual dysfunction. 8 men and 2 women had naturally conceived a child.
The results on psychosexual wellbeing and fertility show that patients independently conquer the challenges of BEEC. This study demonstrated how they cope, with use of open questions. The data show an overall good quality of life and surprisingly high paternity rate. There is an underestimated impact on mental health.
BEEC presents many challenges in adult life. A holistic and interdisciplinary approach is needed to ensure discussion of sensitive topics in long term follow-up.
14:29 - 14:32
Frank-Jan VAN GEEN 1, Eline VAN DE WETERING 2, Anka NIEUWHOF-LEPPINK 3, Aart KLIJN 4 and Laetitia DE KORT 1
1) UMC Utrecht, Urology, Utrecht, NETHERLANDS - 2) Radboudumc, Urology, Nijmegen, NETHERLANDS - 3) Wilhelmina Children's Hospital, Medical Psychology and Urology, Utrecht, NETHERLANDS - 4) Wilhelmina Children's Hospital, Pediatric Urology, Utrecht, NETHERLANDS
Dysfunctional voiding (DV), defined as contractions of the urethral sphincter or pelvic floor musculature during the bladder emptying phase, is a common condition in children. However, the long-term course of childhood dysfunctional voiding into adulthood is unknown. The objective of this study is therefore to explore how childhood DV develops into adulthood, in order to improve our transitional care.
MATERIAL AND METHODS
A cross-sectional follow-up was performed in an existing cohort of females who had specific urotherapy from January 2000 to June 2003 for childhood DV with daytime urinary incontinence (DUI) and/or urinary tract infections (UTI's). The main outcome measurement of this study was a staccato or intermittent urinary flow pattern on current uroflowmetry measurement, possibly indicating persistent or recurrent DV.
A total of 30 patients participated in this study, with a mean duration of 20.8 years after urotherapy. Because of pregnancy, 5 patients were excluded. In 40% (n=10) of cases a staccato or interrupted urinary flow pattern was found on current measurement. Of these participants 90% (n=9) reported UTI's and 50% (n=5) still experienced DUI complaints. In the group with a bell shaped-curve, 64% (n=7) reported UTI's and 73% (n=8) DUI complaints. The impact of existing lower urinary tract symptoms (LUTS) was scored as high in both groups.
Our results show that 40% of females still have DV according to ICS criteria, despite conservative treatment in childhood. Interestingly, most participants did not seek medical care despite the described impact of current LUTS on quality of live.
14:32 - 14:35
Tina L. LEUNBACH, Martin SKØTT, Andreas ERNST, Gitte M. HVISTENDAHL and Yazan F. RAWASHDEH
Aarhus University Hospital, Department of Urology, Section of Pediatric Urology, Aarhus, DENMARK
Hypospadias surgery undertaken in early life often continues to impose challenges as patients age. Little is known about the natural history of uncorrected hypospadias persisting into adulthood. We describe presenting symptoms and management strategies in men with uncorrected hypospadias referred to our national tertiary transitional clinic for congenital urological conditions.
MATERIAL AND METHODS
We identified patients with uncorrected hypospadias older than 16 years at the time of referral by searching the electronic patient record system for ICD-10 hypospadias codes. Data (complaints, hypospadias grade and management) were extracted over a 10-year period according to a predefined protocol.
Among 201 referrals, 65 men with hypospadias (glanular n=12, coronal n=26, subcoronal n=9, corporal n=4, penoscrotal n=2 and MIP n=12) had never had hypospadias surgery undertaken. Presenting symptoms were cosmetic issues (n=11), voiding issues (n=7), curvature (n=4), preputial issues (n=8), coital pain (n=5) and obstructed flow (n=30). Cosmetic issues and coital pain were seen primarily in youth opposed to obstructive symptoms that increased with age (p=0.002). Advancing age was associated with urinary tract infections in the latter. Management was not age dependent, and included reconstructive surgery (n=25), minor surgical procedures (meatotomy, preputioplasty, circumcisio, otis/dilatation n=28) as well as counselling (n=12).
The current cohort sheds light on the dynamic nature of hypospadias in itself. Men with unrepaired hypospadias present with age specific medical issues across the entire lifespan. Minor surgical procedures as well as counselling play an equally important role as hypospadias surgery in the management of unrepaired hypospadias in adulthood.
14:35 - 14:38
Christine SOMMER, Thomas DREYER, Andreas ERNST and Yazan F. RAWASHDEH
Aarhus University Hospital, Urology, Aarhus N, DENMARK
One of the goals of hypospadias surgery is achieving an aesthetically normal appearance of the penis, which entails foreskin reconstruction when technically feasible in countries where an uncircumcised penis is the norm. Few studies have looked at the long-term functional outcome of this procedure.
MATERIAL AND METHODS
Using the hospital electronic patient management system, we identified patients who had undergone surgery for distal hypospadias including foreskin reconstruction in the period 1997 -2004. Once identified, the cohort was invited to answer an online questionnaire and medical charts were scrutinized for details regarding surgery, follow up and complications.
We identified 298 potential candidates of whom 133 partook in the questionnaire (44.6%). A further 19 did not fulfill inclusion criteria, hence 114 patients were studied. Median age was 5.3 (1.0 - 20.2) years at surgery. After a median of 19.5 (15.8 - 23.5) years, 110 patients still had their foreskin. Of these, foreskin was retractable in 101 (91.8%) and 82 (74.5%) in the flaccid and erect states respectively. In all, 18 had received treatment for phimosis after discharge. Of the 97 who had had sexual debut, 93 had an intact foreskin, 15 reported problems with condom use, and 20 reported foreskin related problems with intercourse, mainly pain and tightness. Asked if they wished to be seen for consultation, 27 patients answered in the affirmative.
Foreskin reconstruction in distal hypospadias seems to have a durable long-term outcome in the majority of patients. Still, functional phimosis developed in approximately 25% and interfered with normal sexual function in about 18%. Thus Long-term follow up is advisable in specific cases.
14:38 - 14:41
Joshua ROTH, Konrad SZYMANSKI and Rosalia MISSERI
Riley Hospital for Children at Indiana University Health, Urology, Indianapolis, USA
To assess decisional regret (DR) amongst patients with spina bifida (SB) regarding the decisions caregivers made to manage their neurogenic bladder (NB) as children
MATERIAL AND METHODS
Consecutive adult patients with SB were surveyed at clinic appointments (6/18-1/20). Higher DR Scale scores indicated greater DR (range 0-100). We analyzed whether presence of a ventriculoperitoneal shunt (VPS), mobility, gender, age, history of a bladder augment, history of a catheterizable channel, history of a bladder neck procedure, history of a bladder stone, history of a catheterizable channel revision, urinary incontinence, bothersome urinary incontinence, or recurrent urinary tract infection (3/year) had any impact on DR. Non-parametric statistical tests were used.
Ninety-six patients with a median age of 26.3 (79.2% shunted, 56.3% female) had childhood surgery for NB. Median DR score was 0 (mean 11.9). Overall, 60.4% reported no regret and of those who reported regret, 89.5% reported only mild-moderate regret. In total, 4.2% of patients reported strong or very strong regret. Having any regret was associated with having a bladder neck procedure (OR 3.45, p=0.007) or bothersome urinary incontinence (OR 5.59, p=0.001). Regret was not associated with other factors.
Patients with SB and resultant NB reported low levels of DR after surgery to manage their NB in childhood. When present, DR is usually mild. DR is more likely in those with a bladder neck procedure or bothersome urinary incontinence.