Abstract:
INTRODUCTION:In 2006, nomenclature referencing atypical sex development (i.e., 'intersex') was updated, and the term disorder of sex development (DSD) was formally introduced. Clinicians, patients, and parents, however, have not universally accepted the new terminology, and some continue to use different nomenclature. This inconsistency in terminology can lead to confusion among clinicians and patients, affect clinician-patient relationships, and interfere with the recommended multidisciplinary model for DSD care. OBJECTIVE:This study sought to (1) evaluate frequency of use and comfort with specific DSD terminology, (2) assess why clinicians are not using specific terms, and (3) determine what terms are being heard within the medical community and by the public in a sample of physicians, genetic counselors, and licensed mental health clinicians. STUDY DESIGN:A Web-based survey assessing the use of DSD terminology was distributed to endocrinologists, urologists, genetic counselors, and mental health clinicians. The survey assessed frequency of use and comfort with specific terms, negative experiences related to specific nomenclature use, and the context in which terms are used (e.g. case conference, literature, patient/parents, and media). A qualitative analysis of open-ended responses was conducted to characterize reasons for avoiding specific terms. RESULTS:The survey was completed by 286 clinicians. There were significant differences between specialties in comfort and frequency of use of specific terms, and significant differences were based on clinician gender, patient volume, length of time in practice, and practice setting. The study results also showed a difference in the nomenclature used within the medical community versus the media. DISCUSSION:Study findings are consistent with previous research exploring medical professionals' use of the new term: disorder of sex development. However, there continues to be inconsistency in the uptake of this new terminology. Words that have been purposed in the literature to replace disorder, such as difference and variation, would be accepted by clinicians, and the word divergent would not. This study expands on the existing literature documenting high uptake of disorder of sex development nomenclature among medical professionals. In addition, this study demonstrates that the most common diagnostic terms used by the medical community are not the same terms being presented to the public by the media. CONCLUSION:Medical professionals have varying preferences for terminology use when describing DSD, which can affect patient care. These results can be used in the future to compare with what patients and advocates prefer to develop a more universally accepted approach to nomenclature.
journal_name
J Pediatr Uroljournal_title
Journal of pediatric urologyauthors
Miller L,Leeth EA,Johnson EK,Rosoklija I,Chen D,Aufox SA,Finlayson Cdoi
10.1016/j.jpurol.2018.08.009subject
Has Abstractpub_date
2018-10-01 00:00:00pages
418.e1-418.e7issue
5eissn
1477-5131issn
1873-4898pii
S1477-5131(18)30459-5journal_volume
14pub_type
杂志文章abstract:OBJECTIVE:To evaluate long-term outcomes between various methods of augmentation cystoplasty. METHODS:A retrospective analysis was performed of patients undergoing seromuscular colocystoplasty lined with urothelium (SCLU, n=26), and their outcomes compared to a similar population of patients in the same institution wh...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2007.04.004
更新日期:2007-12-01 00:00:00
abstract:INTRODUCTION:The use of administrative health data for research has prompted questions about its validity for this purpose. OBJECTIVE/STUDY DESIGN:The purpose of this study was to determine the concordance of Pediatric Health Information System (PHIS) perioperative antibiotic charges with the institution's medication ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.01.009
更新日期:2017-04-01 00:00:00
abstract:BACKGROUND:The epidemiology and risk factors for paediatric urolithiasis (UL) in developed countries are evolving, with increasing rates of metabolic stone-formers. In the United Kingdom (UK), only a single London cohort has been studied in the past three decades. Regional disease patterns across the UK remain unknown....
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.03.009
更新日期:2020-06-01 00:00:00
abstract:OBJECTIVE:To determine the effectiveness of gabapentin as an add-on therapy in children presenting with overactive bladder (OAB) not responding to conventional anticholinergics. MATERIALS AND METHODS:Children with refractory OAB were included prospectively from March 2009 to February 2010. The inclusion criterion was ...
journal_title:Journal of pediatric urology
pub_type: 临床试验,杂志文章
doi:10.1016/j.jpurol.2011.10.022
更新日期:2013-02-01 00:00:00
abstract:BACKGROUND:Posterior urethral valves (PUVs) are one of the leading causes of pediatric chronic kidney disease (CKD). Growth impairment is prevalent in pediatric CKD, and children with PUVs are at high risk for growth retardation. OBJECTIVE:The objective of this study was to describe growth profiles in PUVs and to iden...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2019.03.001
更新日期:2019-05-01 00:00:00
abstract:INTRODUCTION:Bladder calculi are a known complication of bladder augmentation. Open cystolithotomy remains the preferred option for treating large or multiple stones. Increasingly, however, minimal access techniques have been used. Reports of Mitrofanoff cystolitholapaxy are rare and have been limited to adults. This s...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,多中心研究
doi:10.1016/j.jpurol.2018.02.024
更新日期:2018-10-01 00:00:00
abstract:INTRODUCTION:Congenital pelviureteric junction obstruction (PUJO) is one of the most frequent causes of neonatal hydronephrosis. Obstruction at the PUJ has potential severe adverse outcomes, such as renal damage. While pyeloplasty has been established as the definitive treatment, the exact pathophysiology of congenital...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.07.014
更新日期:2018-02-01 00:00:00
abstract:OBJECTIVE:Testicular torsion is an emergency condition that causes testicular injury. Any treatment opportunity reducing the destructive effect of testicular torsion is important for the future life of patients. In this experimental study we investigated the protective effect of mannitol on ischemia-reperfusion (I/R) i...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2016.01.004
更新日期:2016-06-01 00:00:00
abstract:OBJECTIVE:Idiopathic hypercalciuria (IHC) has been recognized as a common disorder in childhood, and is a major factor in the formation of renal stones and urinary tract infections (UTIs). Since hydrochlorothiazide ameliorates hypercalciuria, we assessed its efficacy in preventing recurrent UTIs in hypercalciuric girls...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.jpurol.2012.09.008
更新日期:2013-12-01 00:00:00
abstract:OBJECTIVE:Bladder spasms are a common cause of pain after surgical procedures that call for postoperative catheter drainage. Several therapeutic methods have been used to lessen these spasms but none have received widespread success. PATIENTS AND METHODS:Twenty-six children were included in a prospective randomized tr...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2006.11.003
更新日期:2007-08-01 00:00:00
abstract:INTRODUCTION:Ureteropelvic junction obstruction (UPJO) is one of the most frequent urological diseases affecting the pediatric population. It can be due to both intrinsic stenosis of the junction and extrinsic causes such as the presence of crossing vessels (CVs), which can be detected by color Doppler ultrasound (CD-U...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.09.019
更新日期:2018-02-01 00:00:00
abstract:INTRODUCTION:Videourodynamics is the key follow-up examination of children with myelomeningocele. However, it has been performed in specific institutions focused on the urological management of children due to the difficulty in its interpretation. Although a neurogenic bladder frequently appears elongated vertically an...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.09.015
更新日期:2020-12-01 00:00:00
abstract:OBJECTIVE:We have previously reported our early experience (2 patients) of single-incision nephrectomy via the retroperitoneal prone route using an advanced access platform (GelPOINT Mini). Here, we review our series to date and also present a detailed video demonstrating the technique. METHOD:In the prone position, a...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2015.04.010
更新日期:2015-10-01 00:00:00
abstract:INTRODUCTION:Non-Wilms renal tumors represent a compelling subset of childhood renal tumors. However, their relative rarity renders accurate diagnosis, and therapy challenging which in some instance is inferred from their adult counterparts. OBJECTIVE:To describe the incidence and analyze the diagnostic challenges, th...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.05.168
更新日期:2020-08-01 00:00:00
abstract:BACKGROUND:Double J (DJ) stents placed at the end of paediatric urological procedures require another cystoscopy under general anaesthesia for removal. The second author developed a reproducible technique for snaring the DJ stent using an infant feeding tube (6-Fr or 8-Fr) and a 3-0 polypropylene suture per urethra. Ha...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.jpurol.2019.08.009
更新日期:2019-12-01 00:00:00
abstract:OBJECTIVE:Iatrogenic ureteral injury in children is a rare occurrence, with sparse literature available regarding optimal repair techniques. We reviewed our experience in the management of iatrogenic pediatric ureteral injuries, particularly with respect to initial versus delayed diagnoses. METHODS:All pediatric iatro...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2008.08.004
更新日期:2009-02-01 00:00:00
abstract:BACKGROUND:Post-ablation urethral strictures are a rare but devastating complication following transurethral ablation of posterior urethral valve which can be more difficult to treat than the valve itself. Though with the miniaturization of scopes the incidence of these strictures has decreased, sadly they still contin...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.09.001
更新日期:2020-12-01 00:00:00
abstract:BACKGROUND:Post-traumatic posterior urethral injuries in children are rare events. Their management algorithms are extrapolations from adult literature and they continue to pose a difficult challenge for pediatric urologists. Not much data for age-related feasibility of an end-to-end urethroplasty are available. OBJEC...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.05.016
更新日期:2017-12-01 00:00:00
abstract:INTRODUCTION:Parents making complex decisions about hypospadias surgery may experience anxiety and uncertainty related to multiple sources of information with questionable reliability and limited relevance to their concerns. OBJECTIVE:The purpose of this study was to identify knowledge gaps, information-seeking behavi...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.01.008
更新日期:2020-04-01 00:00:00
abstract:OBJECTIVE:Reconstruction of bladder exstrophy in newborn infants requires immobilization, sedation and pain management to prevent distracting forces from compromising the repair. We present a 6-year review of our experience. SUBJECTS AND METHODS:We reviewed the perioperative management of newborn infants undergoing re...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2008.01.207
更新日期:2008-08-01 00:00:00
abstract:PURPOSE:Gil-Vernet trigonoplasty is a simple, fast and effective technique for treating primary VUR, and is the only technique used to manage unilateral reflux that does not result in contralateral new reflux, due to its inherent bilateral nature. We have tried to further simplify postoperative management of the proced...
journal_title:Journal of pediatric urology
pub_type: 临床试验,杂志文章
doi:10.1016/j.jpurol.2008.06.004
更新日期:2008-12-01 00:00:00
abstract:INTRODUCTION:Recent studies have suggested contradictory trends in the incidence of undescended testis (UDT) and hypospadias (HYP), partly because of methodological issues and ascertainment bias. The recently described association of "testicular dysgenesis syndrome" links concomitant UDT and HYP, with decreasing sperm ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2018.07.003
更新日期:2018-12-01 00:00:00
abstract:OBJECTIVE:To evaluate the emotional and behavioral functioning of children with bladder exstrophy-epispadias complex (BEEC), taking into account developmental and gender considerations. This study also sought to overcome methodological limitations of previous studies evaluating psychological well-being of children with...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2013.07.013
更新日期:2014-02-01 00:00:00
abstract:OBJECTIVE:Seven percent of patent processus vaginalis (PPVs) are obliterated at exploration. This potentially increases the risk of cord injury with a subsequent increased risk of testicular atrophy or reduced fertility. We report a modification of a technique to improve identification of the PPV and thus potentially m...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2007.08.008
更新日期:2008-06-01 00:00:00
abstract:INTRODUCTION:Successful surgical therapy for pediatric upper urinary tract calculi (UUTC) minimizes the need for repeat surgical interventions. However, staged procedures, whether planned or unplanned, are sometimes necessary. We assessed predictors of repeat intervention for children with UUTC using a nationwide admin...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,多中心研究
doi:10.1016/j.jpurol.2018.02.017
更新日期:2018-06-01 00:00:00
abstract::Suppose that the recurrence in pediatric urolithiasis has a close relationship with metabolic abnormalities and is affected by residual burden and prophylaxis. If so, the recurrence rates could be reduced with effective surgery and appropriate prophylaxis. Here we retrospectively evaluate the metabolic risk factors da...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.12.003
更新日期:2020-12-06 00:00:00
abstract:OBJECTIVE:To prospectively evaluate the efficacy and safety of a perimeatal-based penile skin flap for neourethral coverage after repair of distal hypospadias with tubularized incised plate urethroplasty (TIPU). METHODS:In 12 New Zealand white rabbits a ventral urethral defect was created and reconstruction was accomp...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2013.12.010
更新日期:2014-06-01 00:00:00
abstract:OBJECTIVE:To evaluate the correction of different degrees of penile torsion following a ladder step so that simpler steps are used whenever possible. This can avoid the morbidity and complications of complex procedures. PATIENTS AND METHODS:Cases of congenital and acquired penile torsion were repaired on a ladder step...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2014.05.009
更新日期:2014-12-01 00:00:00
abstract:OBJECTIVES:It has been suggested that infants with dilating vesicoureteral reflux (VUR) often have lower urinary tract (LUT) dysfunction. Signs such as high voiding pressure levels, low bladder capacity and dyscoordination at voiding have previously been thought to be indicative of dysfunction. However, these findings ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2014.08.010
更新日期:2015-02-01 00:00:00
abstract::Lipoblastomas are rare benign mesenchymal tumors of fetal white fat tissue appearing most commonly in children under 3 years of age, and usually affecting the extremities. Only nine cases of intrascrotal lipoblastoma have been reported to our knowledge, and although they are benign, in one case an orchidectomy was per...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,评审
doi:10.1016/j.jpurol.2013.03.016
更新日期:2013-12-01 00:00:00