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 behaviors, and informational needs of parents making decisions about hypospadias surgery as an initial step in the development of a hypospadias decision aid. STUDY DESIGN:We conducted semi-structured interviews with English-speaking parents (≥18 years of age) of children with hypospadias, inquiring about gaps in their knowledge, information-seeking behaviors, and perceived informational needs (Extended Summary Table). We conducted interviews until no new themes were identified, analyzing them iteratively using open, axial, and selective coding. We used grounded theory methods to develop an explanation of the information-seeking process about hypospadias surgery. RESULTS:Of the 43 eligible parents, 16 mothers and 1 father (39.5%) of 16 patients participated: 7 preoperative and 9 postoperative with distal (8) and proximal (8) meatal locations. Parents were aged 21-43: 15 Caucasians and 2 African-Americans. Educational backgrounds and marital status varied across subjects. We identified five categories of knowledge gaps relating to hypospadias surgery: 1) epidemiology, 2) timing/technique, 3) perioperative experience, 4) long-term cosmetic outcome, and 5) long-term risk of complications. Information-seeking behaviors included searching the internet, discussing hypospadias with the child's pediatrician and/or urologist, and obtaining information from their social network. Most parents sought information online prior to and/or after consultation with the urologist, from parent blogs/forums, medical school/hospital websites, journal articles, and medical databases. Perceived informational needs included clear and reliable information online, images of mild degrees of hypospadias, and images of repaired hypospadias cases. According to the parents, video testimonials from other parents would help them relate to others in their social network and build confidence about the surgical process. DISCUSSION:The findings of this study contribute to our understanding of parental decision-making about hypospadias surgery by highlighting specific knowledge gaps and informational needs for inclusion in a decision aid. Study limitations include a small sample size that is typical and expected for qualitative research studies and the underrepresentation of fathers, minorities, and same-sex couples. CONCLUSIONS:The Internet is the primary source of information most parents use to address knowledge gaps about hypospadias. Parents expressed concerns about the reliability and clarity of information and identified informational needs including parent testimonials and a wide variety of hypospadias images for inclusion in a decision aid.
journal_name
J Pediatr Uroljournal_title
Journal of pediatric urologyauthors
Chan KH,Panoch J,Carroll A,Wiehe S,Cain MP,Frankel Rdoi
10.1016/j.jpurol.2020.01.008subject
Has Abstractpub_date
2020-04-01 00:00:00pages
166.e1-166.e8issue
2eissn
1477-5131issn
1873-4898pii
S1477-5131(20)30010-3journal_volume
16pub_type
杂志文章abstract:INTRODUCTION:The treatment of large renal stones (≥1 cm) in paediatric patients is challenging. The usual treatment options include percutaneous nephrolithotomy (PCNL) or shockwave lithotripsy (SWL). There is a rise in the use of ureteroscopy and laser stone fragmentation (URSL) for paediatric stones; however, outcomes...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2016.07.006
更新日期:2017-04-01 00:00:00
abstract:OBJECTIVE:In principle, the prepuce can be reconstructed during hypospadias repair, but the procedure has not gained wide acceptance and preputial reconstruction (PR) is surrounded by several controversies. MATERIAL AND METHODS:A review is provided of the technique for PR, how PR combines with the other steps of hypos...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,评审
doi:10.1016/j.jpurol.2016.07.018
更新日期:2017-02-01 00:00:00
abstract::This study demonstrates significantly improved bowel symptoms and satisfaction with Peristeen® use in pediatric patients with neurogenic bowel. The longer patients used Peristeen®, the greater the reduction in severity of their Neurogenic bowel and the greater the satisfaction with their bowel management. ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2019.09.023
更新日期:2019-12-01 00:00:00
abstract:INTRODUCTION:Preoperative hormonal stimulation (PHS) is commonly administered to improve hypospadias outcomes. However, current literature provides no clear evidence to support its use, and controversies exist regarding its effect on postoperative complications. Herein we systematically evaluate the effect of PHS on po...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,meta分析,评审
doi:10.1016/j.jpurol.2017.06.019
更新日期:2017-10-01 00:00:00
abstract::Recent studies on gonadal histology have improved the understanding of germ cell malignancy risk in patients with disorders of sex development (DSD), and evidence-based gonadal management strategies are gradually emerging. Especially in 46,XY DSD and 45,X/46,XY DSD, which are characterized by gonadal dysgenesis, the r...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,评审
doi:10.1016/j.jpurol.2016.08.015
更新日期:2016-12-01 00:00:00
abstract:INTRODUCTION:'Transition' not only involves finding an adult healthcare provider, but also includes the process of developing the patient's ability to care for him/herself. Recent literature states that 40% of young adults with special healthcare needs are receiving the tools needed for transition. Pediatric urologists...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2016.04.015
更新日期:2016-08-01 00:00:00
abstract:BACKGROUND:There are many variables affecting the success of treatment in children with primary monosymptomatic nocturnal enuresis (PMNE). This study investigates the possible effect of cigarette smoke exposure on desmopressin treatment response in children with PMNE. METHOD:The medical records of pediatric patients w...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2019.10.012
更新日期:2020-02-01 00:00:00
abstract:PURPOSE:There is limited evidence that prophylactic antibiotics prevent surgical site infection in stented, distal hypospadias repair. Our hypothesis is that the use of prophylactic antibiotics does not affect the rate of surgical site infection in this setting. METHODS:We conducted a retrospective study of consecutiv...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.11.033
更新日期:2020-11-30 00:00:00
abstract::Laparoendoscopic single-site surgery (LESS), a minimally invasive procedure, is gaining widespread acknowledgment in pediatric urology. We report the case of a 7-year-old girl with Turner's syndrome with 45,XO/46,XY mosaicism, for whom bilateral prophylactic gonadectomy using LESS was performed. Histopathological find...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2012.02.010
更新日期:2012-08-01 00:00:00
abstract:INTRODUCTION AND OBJECTIVE:Endourological and percutaneous approaches are the standard of care for treatment of pediatric urolithiasis. However, in certain situations, an endoscopic-assisted robotic pyelolithotomy (EARP) can be an acceptable alternative. Limited data exist on pediatric EARP; thus, the authors describe ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2019.12.007
更新日期:2020-04-01 00:00:00
abstract:OBJECTIVE:Our aim was to assess the outcomes of infant robot-assisted laparoscopic (RAL) upper urinary tract reconstruction. MATERIALS AND METHODS:The medical records of all infants who underwent RAL upper urinary tract reconstruction were reviewed. Patients less than 1 year of age at surgery were included. Patient de...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2014.01.029
更新日期:2014-10-01 00:00:00
abstract:INTRODUCTION AND OBJECTIVE:Vesicoureteral reflux (VUR) has been associated with the development and progression of reflux nephropathy (RN). Management of VUR has become more conservative over time as therapies have not been reliably proven to prevent renal scarring. We sought to examine the incidence of end stage renal...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.06.023
更新日期:2020-10-01 00:00:00
abstract:INTRODUCTION:Upper tract damage (UTD) is a life-threatening complication of neurogenic bladder (NB). Early identification of risk factors for UTD and institution of remedial measures may probably prevent UTD. The aim was to study the predictors of UTD in children 2 years or older with NB. METHOD:This cross-sectional, ...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.02.026
更新日期:2017-10-01 00:00:00
abstract:OBJECTIVE:The objective of this study was to determine if later toilet training is associated with urge incontinence in children. METHODS:We used a case-control study design to yield level 2 evidence. RESULTS:Initiation of toilet training after 32 months of age was associated with urge incontinence (P=0.02). CONCLUS...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2009.05.012
更新日期:2009-12-01 00:00:00
abstract:BACKGROUND:Children with daytime urinary incontinence secondary to idiopathic overactive bladder (IOAB) commonly present to paediatric urologists following failure of standard urotherapy and/or 1st-line anticholinergics. Off-label oral medications and intravesical botulinum toxin A (BtA) are being increasingly used for...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2019.10.013
更新日期:2020-02-01 00:00:00
abstract:PURPOSE:To evaluate the outcome of secondary surgical procedures for the management of failed pyeloplasty in children. MATERIALS AND METHODS:Between 1996 and 2007, 590 cases of primary ureteropelvic junction (UPJ) obstruction underwent open dismembered pyeloplasty at our center. Of these patients, 18 (3%) with recurre...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2008.09.001
更新日期:2009-04-01 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:INTRODUCTION:Abdominoplasty is an important component of the management of children with prune belly syndrome (PBS). While there are features of the abdominal defect in PBS which are common to all patients, there will be differences unique to each patient that should be taken into consideration in surgical planning. Sp...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.02.020
更新日期:2017-10-01 00:00:00
abstract:INTRODUCTION:As there is only scarce information on the parents' view of the cosmetic outcome after hypospadias surgery we aimed to evaluate whether the results of the hypospadias objective penile evaluation (HOPE) score are transferable to parents satisfaction as measured by the pediatric penile perception score (PPPS...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2015.10.010
更新日期:2016-02-01 00:00:00
abstract:INTRODUCTION:We review outcomes after management of meatal balanitis xerotica obliterans (BXO). The primary outcome was recurrent meatal BXO. METHODS:A database comprising mostly hypospadias patients was queried for meatal BXO. The disease was confirmed histologically in all cases. Management included topical steroids...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2016.10.014
更新日期:2017-04-01 00:00:00
abstract:BACKGROUND:Parents of uncircumcised boys often report confusion regarding the proper care and hygiene practices for the uncircumcised penis. The lack of guidance from healthcare providers may be due to a lack of consensus on the proper care of the prepuce. OBJECTIVE:The aim of this study was to determine whether or no...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2018.05.024
更新日期:2018-12-01 00:00:00
abstract::Bladder trabeculation (BT) is commonly noted on cystogram images of patients with neurogenic bladder (NB). BT is associated with a hostile bladder often requiring prompt, more aggressive management. We aimed to define and validate a reliable grading system for BT severity. The proposed grading system will improve clin...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2020.03.007
更新日期:2020-06-01 00:00:00
abstract:INTRODUCTION AND OBJECTIVE:Inguinal hernias and communicating hydroceles from a patent processus vaginalis (PPV) are common problems in children. This study provides a detailed description of the laparoscopic intra-abdominal patent processus vaginalis ligation (LIPPL) procedure along with its results in pediatric urolo...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.03.026
更新日期:2017-10-01 00:00:00
abstract:BACKGROUND:Continuous antimicrobial prophylaxis (prophylaxis) is associated with a reduction in recurrent urinary tract infections in children with vesicoureteral reflux. However, adherence to daily medications has been shown to be poor. OBJECTIVE:To determine patient/caregiver factors associated with non-adherence an...
journal_title:Journal of pediatric urology
pub_type: 杂志文章,随机对照试验
doi:10.1016/j.jpurol.2019.04.019
更新日期:2019-08-01 00:00:00
abstract:AIM:To evaluate health-related quality of life (HRQoL) in adults with myelomeningocele (MMC) measured by SF-36. MATERIALS AND METHODS:All individuals (134) with MMC from western Sweden born before 1981, 69 with a median age of 34 years (range 27-50), participated in a telephone interview. Of these, 61 took part in SF-...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2013.05.005
更新日期:2013-10-01 00:00:00
abstract:INTRODUCTION:Stomal stenosis is the most common complication after the creation of a continent catheterizable channel (CCC), but is challenging to treat. OBJECTIVE:To describe early experience with triamcinolone injection for the treatment of stomal stenosis. MATERIALS AND METHODS:A retrospective review was performed...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2017.06.007
更新日期:2017-08-01 00:00:00
abstract:INTRODUCTION:There is a paucity of data comparing urethral stents after hypospadias repair. The aim of this study is to compare Silastic tubing vs Koyle stents (Cook Medical), addressing outcomes related to stent-related complications, added visits to healthcare providers in the early postoperative period, and postoper...
journal_title:Journal of pediatric urology
pub_type: 临床试验,杂志文章
doi:10.1016/j.jpurol.2018.08.002
更新日期:2018-10-01 00:00:00
abstract:PURPOSE:Intestinal bladder augmentation predisposes the patient to many complications. The aim of this study was to determine whether augmentation has an adverse effect on growth. MATERIALS AND METHODS:Longitudinal growth data were collected and analyzed for nine patients with bladder exstrophy and augmentation, and c...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2007.07.002
更新日期:2008-02-01 00:00:00
abstract:OBJECTIVE:We present our experience of management of high-grade renal trauma in a pediatric population, including assessment of the long-term function and morphology of the ipsilateral kidney. PATIENTS AND METHODS:From 1997 to 2005, 40 children with high-grade renal injury (III, IV, V) after blunt abdominal trauma wer...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2006.07.006
更新日期:2007-06-01 00:00:00
abstract:OBJECTIVE:To address the issue of sexual function and fertility in PUV patients. PATIENTS AND METHODS:Of 47 patients (age > 18 years) treated for PUV in infancy 28 were contactable. They were sent a standard questionnaire requesting details on voiding dysfunction symptoms, and experience of erection, orgasm and ejacul...
journal_title:Journal of pediatric urology
pub_type: 杂志文章
doi:10.1016/j.jpurol.2011.11.006
更新日期:2013-02-01 00:00:00