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Prenatal hydrocolpos is characterized by fluid distension of the vagina. Hydrocolpos can be caused by multiple underlying etiologies and often demonstrates overlapping imaging features compared to other cystic abdominal and pelvic lesions. The purpose of the current pictorial essay is to provide a systematic prenatal magnetic resonance imaging (MRI) approach to differentiating the primary etiologies leading to hydrocolpos. After discussing the fundamental embryological processes involved in vaginal development, the current essay discusses the most common causes of hydrocolpos with their associated prenatal and postnatal imaging features. An approach to distinguishing the more common differential diagnoses is provided. Given the implications of parental counseling and postnatal management, this essay provides an important approach for narrowing differential diagnoses based on prenatal imaging.
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PURPOSE: Patient- and family-centered communication is essential to health care equity. However, less is known about how urologists implement evidence-based communication and dynamics involved in caring for diverse pediatric patients and caregivers. We sought to evaluate the feasibility and acceptability using video-based research to characterize physician-family communication in pediatric urology. MATERIALS AND METHODS: We assembled a multidisciplinary team to conduct a multiphase learning health systems project to establish the Urology HEIRS (Health Experiences and Interactions in Real-time Studies) corpus for research and interventions. This paper reports the first phase, evaluating feasibility and acceptability based on consent rate, patient diversity, and qualitative identification of verbal and paraverbal features of physician-family communication. We used applied conversation analysis methodology to identify salient practices across 8 pediatric urologists. RESULTS: We recruited 111 families at 2 clinic sites; of these 82 families (N = 85 patients, ages 0-20 years) participated in the study with a consent rate of 73.9%. The racial/ethnic composition of the sample was 45.9% non-Hispanic White, 30.6% any race of Hispanic origin, 16.5% non-Hispanic Black/African American, 4.7% any ethnicity of Asian/Asian American, and 2.3% some other race/ethnicity; 24.7% of families used interpreters. We identified 11 verbal and paraverbal communication practices that impacted physician-family dynamics, including unique challenges with technology-mediated interpreters. CONCLUSIONS: Video-based research is feasible and acceptable with diverse families in pediatric urology settings. The Urology HEIRS corpus will enable future systematic studies of physician-family communication in pediatric urology and provides an empirical basis for specialty-specific training in patient- and family-centered communication.
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INTRODUCTION: Latinx, Spanish-speaking (LSS) patients are more likely to experience decisional conflict and regret about healthcare decisions than non-Hispanic, white, English-speaking patients. OBJECTIVE: To adapt the Hypospadias Hub (Hub), a rigorously developed and tested web-based decision aid (DA), for LSS parents. METHODS: Guided by the Ecological Validity Model (EVM), a heuristic framework was followed to culturally adapt the Hub (see Extended Summary Figure). In stage 1, recommendations were obtained from a focus group with members of the institution's Latinx Community Review Board (Latinx CRB) and semi-structured interviews with pediatricians with Latinx-focused practices. In stage 2, preliminary cultural modifications were made, the Hub was translated into Spanish, and a second focus group with the Latinx CRB was convened to review the revised Hub. In stage 3, semi-structured interviews with LSS parents of healthy boys (i.e., without hypospadias) ≤ 5 years old were conducted to identify any cultural adaptations and/or usability issues regarding the revised Hub. In stage 4, based on parents' feedback, final revisions to the Hub were made. The focus groups and parent interviews were conducted in Spanish; then, the recordings were professionally transcribed in Spanish and translated into English. Interviews with pediatricians were conducted in English; then, the recordings were professionally transcribed. Three coders conducted a qualitative content analysis to identify areas for revision. Changes were applied iteratively. RESULTS: Participants included 3 Latinx CRB members (2 women, 1 did not disclose gender; mean age = 48.3, SD = 21.2), 3 non-Latinx pediatricians (2 women, 1 man; mean age = 49.6, SD = 9.1), and 5 Latinx mothers (mean age = 34.0, SD = 1.26). Participants recommended: 1) featuring video testimonials from Latinx families or including Spanish voice-overs/subtitles; 2) diversifying racial/ethnic/geographic representation and including extended families in photographs/illustrations; 3) adding information about health insurance coverage and circumcision, 4) reassuring parents that the condition is not their fault, 5) considering cultural values (e.g., reliance on expert advice), and 6) clarifying medical terminology. Feedback related to seven EVM dimensions: concepts, content, context, goals, language, metaphors, and methods. DISCUSSION: Participants perceived the Hub to be informative in guiding parents' treatment decisions. Revisions were reasonable and acceptable for a linguistic and cultural adaptation for LSS parents. CONCLUSIONS: We identified and implemented preliminary cultural modifications to the Hub and applied user-centered design methods to test and revise the website. The product is a culturally appropriate DA for LSS parents. Next, English and Spanish-versions of the Hub will be tested in a randomized controlled trial.
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Técnicas de Apoio para a Decisão , Hispânico ou Latino , Hipospadia , Humanos , Masculino , Hispânico ou Latino/psicologia , Hipospadia/etnologia , Hipospadia/cirurgia , Hipospadia/psicologia , Grupos Focais , Pais/psicologia , Pré-Escolar , Feminino , Idioma , Linguística , Características CulturaisRESUMO
INTRODUCTION: Parents are at risk of decision regret (DR) for decisions affecting their children. The Decision Regret Scale (DRS) measures medical DR but lacks context outside of healthcare. OBJECTIVE: To compare parental DR 1) between common pediatric urologic surgeries and everyday decisions and 2) with preference to make a different choice. METHODS: We conducted a cross-sectional online survey of randomly selected parents >1year (y) after their children underwent: orchiopexy (males ≤10y), open ureteral reimplant (OUR, females 2-6y), open pyeloplasty (OP, ≤2y), or robotic pyeloplasty (RP, 5-17y) (2017-2021). Higher DRS scores indicate increased DR (none: 0, mild: 1-25, moderate: 30-50, strong: 55-75, very strong: 80-100). Parents completed DRS on four decisions: their child's surgery, most recent/current romantic relationship, most recent leased/purchased car, and most recent purchased meal. Parents reported if they would make the same choice (yes/no). Nonparametric statistics were used. RESULTS: We surveyed 191 parents (orchiopexy n = 52, OUR n = 50, OP n = 51, RP n = 38). The median parent age was 36y (mothers: 86%). Some DR was reported for all decisions, but with significant differences in DR severity. The lowest median DRS score was seen with surgery (orchiopexy 0 [IQR 0-10], OUR 0 [IQR 0-5], OP 0 [IQR 0-0], RP 0 [IQR 0-0]), with no difference between surgery groups (p = 0.78). This was followed by relationship (0, IQR 0-20), car (15, IQR 0-25), and meal (20, IQR 0-30, p < 0.001). Most parents did not report any DR regarding surgery (orchiopexy 69%, OUR 74%, OP 76%, RP 76%, with no difference between surgery groups p = 0.85, Summary Figure). Comparatively, 59% of parents did not have any regret about their relationship, 37% their car, and 28% their meal (p < 0.001). All surgical DR was mild or moderate. No parent (0%) would have chosen differently for their child's surgery versus 4-12% for non-surgical decisions (p < 0.001). Overall, increasing DR corresponded to increasing desire to have made a different choice (DRS≤10: 0%, DRS 45-50: 32%, DRS 55-60: 66%, DRS≥75: 100%, p < 0.001). CONCLUSION: Parental DR varied between urological surgical and non-surgical decisions. It was lowest after surgery. Some regret was reported after every decision, but the subset of parents with regret was smallest after surgical decisions. Positive DRS scores do not necessarily correspond to parents wishing they made a different choice.
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Tomada de Decisões , Emoções , Pais , Procedimentos Cirúrgicos Urológicos , Humanos , Masculino , Feminino , Estudos Transversais , Pais/psicologia , Criança , Procedimentos Cirúrgicos Urológicos/métodos , Procedimentos Cirúrgicos Urológicos/psicologia , Pré-Escolar , Adolescente , Adulto , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Teaching methods in hypospadias repair are still traditional. Available simulators often lack authenticity in terms of haptic feedback and realistic tissue handling. OBJECTIVE: Our aim was to develop a high-fidelity, easily reproducible, and affordable animal tissue model for the advanced surgical simulation of hypospadias repair with realistic haptic feedback and tissue handling. MATERIAL AND METHODS: A regular-sized chicken leg and a lamb tenderloin are used to assess the feasibility of simulating hypospadias correction by using the example of a Snodgrass Tubularized Incised Plate-Repair. The model preparation is incorporated into the training process. RESULTS: A detailed description of the high-fidelity model is provided. All steps of a hypospadias repair can be trained while providing realistic anatomy, adequate size, and multilayer tissue properties. Haptic conditions highly resemble human tissue properties. Fine tissue handling corresponds to intraoperative conditions. Limitations to this surgical model apply as in other animal tissue models. CONCLUSION: We developed a high-fidelity, easily reproducible, and affordable hypospadias animal tissue model. Due to the multilayer animal tissue properties, this model provides realistic haptic feedback and thus an inexpensive and reproducible model for hypospadias simulation. External validation is mandatory prior to implementation into urological training.
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Hipospadia , Procedimentos Cirúrgicos Urológicos Masculinos , Hipospadia/cirurgia , Masculino , Animais , Procedimentos Cirúrgicos Urológicos Masculinos/métodos , Procedimentos Cirúrgicos Urológicos Masculinos/educação , Ovinos , Galinhas , Reprodutibilidade dos Testes , Treinamento por Simulação/métodos , Modelos Animais , Modelos Animais de DoençasRESUMO
Why and when is animal experimentation relevant? The answer to this question depends on the research question. In this short educational article we aim to raise awareness of the importance of formulating a very specific research question before choosing an animal species. An awareness of anatomical and physiological differences vis-a-vis similarities between species, will increase the potential for obtaining data that is relevant for translation to human conditions.
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Experimentação Animal , Urologia , Animais , Criança , HumanosRESUMO
When performing animal experimentation in Pediatric Urology studies, it is important to be aware of physiological differences between species and to understand when relevant disease models are available. Diseased animal models may be more relevant in many cases, rather than performing studies in healthy and normally developed animals. For example, they may be more appropriate for the study of congenital malformations, to investigate the secondary effects of prenatal urinary obstruction, to study the effect of prenatal exposure to endogenous or exogenous factors which may lead to disease, or in testing bioengineered structures. In this short educational article, we aim to describe some disease models that have been used to simulate human pathologies and how, if properly designed, these studies can lead to important new knowledge for human translation. In addition, we also highlight the importance of formulating a research question(s) before deciding on the animal experimental model and species to choose.
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Experimentação Animal , Urologia , Animais , Humanos , Criança , Modelos AnimaisRESUMO
OBJECTIVE: While the Malone antegrade continence enema (MACE) facilitates bowel movements in patients with spina bifida (SB) and neuropathic bowel, little is known about its long-term use. We aimed to assess long-term MACE use and potential risk factors for disuse. METHODS: All patients with SB who underwent MACE procedures at our institution were retrospectively reviewed. Main outcome was MACE disuse (no longer catheterizing the MACE for antegrade enemas) based on self-report on a clinic questionnaire, or medical record for patients last seen before introducing the questionnaire 5 years ago. Survival analysis used two timeframes: time after surgery (Analysis 1) and chronological age: accounting for older children reaching adulthood earlier (Analysis 2). RESULTS: Overall, 411 patients (54% female, 78% shunted, 65% augmented) underwent a MACE procedure at median 7.9 years old (median follow-up: 8.4 years). Thirty-three (8%) patients no longer used their MACE. Most common reasons for doing so were channel/stomal stenosis (61%) and excision at colostomy or other abdominal surgery (12%). Bowel management afterwards included oral agents ± enemas (55%), Chait tube (30%), colostomy (12%). After correcting for differential follow-up, 90% of participants used their MACE at 10 years and 87% at 15 years after surgery. Based on chronological age, 97% used their MACE at 15 years old, 92% at 20 and 81% at 30 (Summary Figure). On multivariate analysis, umbilical MACEs were 2.4 times more likely to be disused than right lower quadrant MACEs (p = 0.04). Without correcting for chronological age (Analysis 1), patients undergoing MACE surgery at older ages were more likely to stop MACE use (p = 0.03). However, after accounting for chronological age (Analysis 2), patients undergoing a MACE procedure at older ages were no more likely to stop its use (p = 0.47, Figure). Gender, SB type, shunt status, mobility status, bladder augmentation or a urinary catheterizable channel were not associated with stopping MACE use (p ≥ 0.10). COMMENT: Participants were regularly followed in multi-disciplinary SB clinics. We did not assess continence, satisfaction or long-term urinary channel use, making it premature to recommend optimal stomal locations. CONCLUSIONS: Most patients with SB followed by a multi-disciplinary team continue using their MACE; 1% stopped MACE use annually, particularly after adolescence. This strongly suggests it is an effective bowel management method and transitioning to self-care plays a role in maintaining long-term MACE use. Umbilical MACEs may be at high risk of disuse, but all people with a MACE can benefit from support as they transition to adult care.
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Incontinência Fecal , Disrafismo Espinal , Estomas Cirúrgicos , Criança , Adulto , Adolescente , Humanos , Feminino , Masculino , Estudos Retrospectivos , Incontinência Fecal/etiologia , Incontinência Fecal/cirurgia , Disrafismo Espinal/complicações , Disrafismo Espinal/cirurgia , Enema/métodosRESUMO
OBJECTIVE: Data on sexual function of men with spina bifida (SB) is limited. We aimed to assess sexual activity and erectile dysfunction (ED) in a large international sample of men with SB. METHODS: Men with SB (≥18yo) were recruited in an international online survey via clinics and social media. We collected data on demographics, ambulation (Hoffer classification), penile rigidity (Erection Hardness Score), sexual activity and ED (International Index of Erectile Function). Non-parametric tests were used. RESULTS: A total of 162 men (median age 35, 62% shunted, 38% community ambulators) reported sexual desire similar to the general population (p = 0.82), but 55% were dissatisfied with their sex life (Summary Table). Overall, 36% reported full penile rigidity with erections, more commonly with better ambulation (p = 0.01), 69% had ever experienced orgasm and 84% ejaculated. In 44 men (27%) attempting sexual intercourse in the last 4 weeks, 59% had ED (11% severe, 7% moderate, 14% mild-moderate, 27% mild). In this group, 91% of men reporting less than full penile rigidity had ED, compared to 30% with full penile rigidity (p = 0.001). Overall, partnered non-genital contact in the last 3 months was reported by 56%, solo masturbation: 62%, partnered intercourse: 48% (31% vaginal). Of 54 men who used phosphodiesterase type 5 inhibitors (PDE5I), 80% reported improved erections, 56% improved intercourse. Overall, 40% reported non-genital erogenous zones as most pleasurable, especially with poorer ambulation (p = 0.002, chest/nipples: 73%). COMMENT: Strengths of this study include anonymous, voluntary, online participation maximizing participation of a heterogenous, international population. Whenever available, we compared findings to published values for the general population. Since romantic and sexual activity is a complex intersection of interest, opportunity and ability, a more comprehensive assessment was beyond the study's scope. Future work will focus on the interplay with issues like incontinence. CONCLUSIONS: ED was frequent among men with SB, especially in men with poorer ambulation. PDE5 inhibitors may be beneficial. Partnered sexual activity was reported by half of the men, although it may not involve penetrative intercourse.
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Disfunção Erétil , Disrafismo Espinal , Masculino , Feminino , Humanos , Adulto , Comportamento Sexual , Disfunção Erétil/epidemiologia , Ereção Peniana , Disrafismo Espinal/complicações , OrgasmoRESUMO
BACKGROUND: Using a user-centered design approach, we conducted a two-site pilot study to evaluate a decision aid (DA) website, the Hypospadias Hub, for parents of hypospadias patients. OBJECTIVES: The objectives were to assess the Hub's acceptability, remote usability, and feasibility of study procedures, and to evaluate its preliminary efficacy. METHODS: From June 2021-February 2022, we recruited English-speaking parents (≥18 years old) of hypospadias patients (≤5 years) and delivered the Hub electronically ≤2 months before their hypospadias consultation. We collected website analytic data using an ad tracker plug-in. We inquired about treatment preference, hypospadias knowledge, and decisional conflict (Decisional Conflict Scale) at baseline, after viewing the Hub (pre-consultation), and post-consultation. We administered the Decision Aid Acceptability Questionnaire (DAAQ) and the Preparation for Decision-Making Scale (PrepDM) which assessed how well the Hub prepared parents for decision-making with the urologist. Post-consultation, we assessed participants' perception of involvement in decision-making with the Shared Decision-making Questionnaire (SDM-Q-9) and the Decision Regret Scale (DRS). A bivariate analysis compared participants' baseline and pre/post-consultation hypospadias knowledge, decisional conflict, and treatment preference. Using a thematic analysis, we analyzed our semi-structured interviews to uncover how the Hub impacted the consultation and what influenced participants' decisions. RESULTS: Of 148 parents contacted, 134 were eligible and 65/134 (48.5%) enrolled: mean age 29.2, 96.9% female, 76.6% White (Extended Summary Figure). Pre/post-viewing the Hub, there was a statistically significant increase in hypospadias knowledge (54.3 vs. 75.6, p < 0.001) and decrease in decisional conflict (36.0 vs. 21.9, p < 0.001). Most participants (83.3%) thought Hub's length and amount of information (70.4%) was "about right", and 93.0% found most or everything was clear. Pre/post-consultation, there was a statistically significant decrease in decisional conflict (21.9 vs. 8.8, p < 0.001). PrepDM's mean score was 82.6/100 (SD = 14.1); SDM-Q-9's mean score was 82.5/100 (SD = 16.7). DCS's mean score was 25.0/100 (SD = 47.03). Each participant spent an average of 25.75 min reviewing the Hub. Based on thematic analysis, the Hub helped participants feel prepared for the consultation. DISCUSSION: Participants engaged extensively with the Hub and demonstrated improved hypospadias knowledge and decision quality. They felt prepared for the consultation and perceived a high degree of involvement in decision-making. CONCLUSION: As the first pilot test of a pediatric urology DA, the Hub was acceptable and study procedures were feasible. We plan to conduct a randomized controlled trial of the Hub versus usual care to test its efficacy to improve the quality of shared decision-making and reduce long-term decisional regret.
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Tomada de Decisões , Hipospadia , Criança , Masculino , Humanos , Feminino , Adolescente , Projetos Piloto , Hipospadia/cirurgia , Pais , Tomada de Decisão CompartilhadaRESUMO
OBJECTIVE: We aimed to quantify end-stage kidney disease (ESKD) risk after infancy in individuals with myelomeningocele (MMC) followed by urology in the modern medical era and to assess if ESKD risk was higher after surgery related to a hostile bladder. METHODS: We retrospectively reviewed patients with MMC followed by urology at our institution born ≥ 1972 (when clean intermittent catheterization was introduced) past 1 year of age (when mortality is highest, sometimes before establishing urology care). ESKD was defined as requiring permanent peritoneal/hemodialysis or renal transplantation. Early surgery related to hostile bladder included incontinent vesicostomy, bladder augmentation, detrusor Botulinum A toxin injection, ureteral reimplantation, or nephrectomy for recurrent urinary tract infections. Survival analysis and proportional hazards regression were used. Sensitivity analyses included: risk factor analysis with only vesicostomy, timing of surgery, including the entire population without minimal follow-up (n = 1054) and only patients with ≥ 5 years of follow-up (n = 925). RESULTS: Overall, 1029 patients with MMC were followed for a median of 17.0 years (49% female, 76% shunted). Seven patients (0.7%) developed ESKD at a median 24.3 years old (5 hemodialysis, 1 peritoneal dialysis, 1 transplantation). On survival analysis, the ESKD risk was 0.3% at 20 years old and 2.1% at 30 years old (Figure). This was â¼100 times higher than the general population (0.003% by 21 years old, p < 0.001). Patients who underwent early surgery for hostile bladder had higher ESKD risk (HR 8.3, p = 0.001, 6% vs. 1.5% at 30 years). On exploratory analyses, gender, birth year, shunt status and wheelchair use were not associated with ESKD risk (p ≥ 0.16). Thirty-year ESKD risk was 10% after early vesicostomy vs. 1.4% among children without one (p = 0.001). Children undergoing bladder surgery between 1.5 and 5 years old had a higher risk of ESKD. No other statistically/clinically significant differences were noted. COMMENT: Patients with MMC remain at risk of progressive renal damage throughout life. We relied on the final binary ESKD outcome to quantify this risk, rather than imprecise glomerular filtration rate formulas. Analysis was limited by few people developing ESKD, inconsistent documentation of early urodynamic findings and indications for bladder-related surgery. CONCLUSIONS: While ESKD is relatively uncommon in the MMC population receiving routine urological care, affecting 2.1% of individuals in the first 3 decades, it is significantly higher than the general population. Children with poor bladder function are likely at high risk, underlining the need for routine urological care, particularly in adulthood.
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Falência Renal Crônica , Meningomielocele , Bexiga Urinaria Neurogênica , Criança , Humanos , Feminino , Adulto Jovem , Adulto , Lactente , Pré-Escolar , Masculino , Meningomielocele/complicações , Meningomielocele/cirurgia , Estudos Retrospectivos , Bexiga Urinária/cirurgia , Falência Renal Crônica/complicações , Falência Renal Crônica/terapia , Bexiga Urinaria Neurogênica/etiologia , Bexiga Urinaria Neurogênica/cirurgiaRESUMO
Abnormal penile foreskin development in hypospadias is the most frequent genital malformation in male children, which has increased dramatically in recent decades. A number of environmental factors have been shown to be associated with hypospadias development. The current study investigated the role of epigenetics in the etiology of hypospadias and compared mild (distal), moderate (mid shaft), and severe (proximal) hypospadias. Penile foreskin samples were collected from hypospadias and non-hypospadias individuals to identify alterations in DNA methylation associated with hypospadias. Dramatic numbers of differential DNA methylation regions (DMRs) were observed in the mild hypospadias, with reduced numbers in moderate and low numbers in severe hypospadias. Atresia (cell loss) of the principal foreskin fibroblast is suspected to be a component of the disease etiology. A genome-wide (> 95%) epigenetic analysis was used and the genomic features of the DMRs identified. The DMR associated genes identified a number of novel hypospadias associated genes and pathways, as well as genes and networks known to be involved in hypospadias etiology. Observations demonstrate altered DNA methylation sites in penile foreskin is a component of hypospadias etiology. In addition, a potential role of environmental epigenetics and epigenetic inheritance in hypospadias disease etiology is suggested.
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Prepúcio do Pênis , Hipospadia , Criança , Humanos , Masculino , Prepúcio do Pênis/metabolismo , Metilação de DNA , Hipospadia/genética , Hipospadia/metabolismo , Epigênese Genética , GenômicaRESUMO
BACKGROUND: The successful repair of Bladder Exstrophy remains one of the biggest challenges in Pediatric Urology. The primary focus has long been on the achievement of urinary continence. Historically there has been less focus on early penile outcomes. To this end we have incorporated penile perfusion testing using intraoperative laser angiography in to our operative approach. OBJECTIVE: We hypothesize that assessment of penile perfusion at various points in the procedure is a feasible technique that may assist in decision making during the repair of this complex condition. This will reduce the risk of tissue compression and potential loss of penile tissue that has been reported to occur as a complication of the procedure. STUDY DESIGN: Consecutive patients presenting with bladder exstrophy were evaluated at four stages of their operation (i.e. following induction of anesthesia, after bladder mobilization, following internal rotation of the pubis and at the end of the procedure) by infusing indocyanine green (ICG) at a dose of 1 mg per 10 kg body weight. Measurements were taken at 80 s post infusion and the medial thigh served as the reference control. Postoperative penile viability was evaluated by visual inspection and palpation three months following the procedure. RESULTS: Eight consecutive patients were included in this study. Perfusion was easy to measure and posed no significant technical difficulties. Penile perfusion increased slightly following bladder dissection. Internal rotation of the hips with apposition of the symphysis pubis resulted in an average 50% reduction in penile blood flow. Patients undergoing CPRE experienced an additional mean 33% drop in blood flow. In all eight cases the penis was symmetric and healthy with no sign of tissue loss at three months follow up. CONCLUSIONS: This pilot study demonstrates that the measurement of penile perfusion utilizing intraoperative laser angiography is easy to employ and should be considered a reasonable adjunct to tissue assessment in this complex condition. Marked reduction in penile blood flow may occur without any outward clinical signs. Penile perfusion is markedly reduced by apposition of the symphysis pubis and, in the immediate postoperative period, there may be further reduction in penile blood flow with CPRE as opposed to a staged repair. Future correlation with measures of penile viability and function are needed to define the clinical utility of this modality.
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Extrofia Vesical , Epispadia , Criança , Masculino , Humanos , Extrofia Vesical/cirurgia , Projetos Piloto , Pênis/diagnóstico por imagem , Pênis/cirurgia , Pênis/irrigação sanguínea , Perfusão , Angiografia , Lasers , Epispadia/cirurgiaRESUMO
INTRODUCTION: In previous work, we engaged key stakeholders to create a web-based decision aid (DA) prototype to facilitate shared decision making about hypospadias. OBJECTIVE: The study's objective was to use a human-centered design approach to assess the DA's acceptability and usability and revise it prior to pilot testing. METHODS: We recruited English-speaking parents (≥18 years old) of sons with hypospadias (≤5 years) for a two-phase process of semi-structured phone/video interviews to obtain feedback about our DA prototype. DA webpages included: "Hypospadias," "Surgery Basics," "No Surgery," "Family Stories," "Help Me Decide," and "FAQs." In both phases, participants viewed the DA using the "think aloud" technique and completed several validated scales to evaluate its acceptability and usability. In phase 1, we collected feedback about the "Homepage" organization, values clarification methods (VCM), and webpage content. In phase 2, participants searched the DA for answers to hypospadias-related questions, provided feedback on testimonial videos and VCM, and shared their preferences about data visualizations. All interviews were audio recorded. After each phase, transcripts were qualitatively analyzed to identify key areas for revision. Revisions were made between phase 1 and 2 to improve the DA's acceptability and usability. RESULTS: We interviewed 20 participants (10/phase): median age 33.7 years, 60% female, 80% White. Mean score on the Preparation for Decision Making Scale: 86.8 (out of 100). We revised: 1) VCM, focusing on pros/cons of surgery and question prompts, 2) "Homepage," adding webpage descriptions (Extended Summary Figure), 3) menu organization, 4) "Surgery Day" webpage, adding general anesthesia risk information, and 5) "Hypospadias" webpage, adding an icon bar graph to help participants visualize statistics. Participants thought the testimonial videos were relatable and the VCMs would prepare them for their visit with their child's urologist. DISCUSSION: Ours is the first parent-centered DA developed and pre-tested for hypospadias. Using validated usability and acceptability scales, participants highly rated the DA in helping them arrive at a decision about surgery. Study limitations include the sample's lack of diversity (i.e., educated, health literate) and participants already decided about their son's hypospadias management before enrolling. To learn more about the DA's usability and acceptability, we plan to pilot test it in a clinical setting. CONCLUSIONS: Participants found our DA informative in understanding hypospadias. There was a high perceived level of preparation for hypospadias decision making. Participatory research methods, such as "think aloud," may be helpful when testing DAs as they privilege the patient's experience.
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Hipospadia , Adolescente , Adulto , Criança , Tomada de Decisões , Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Feminino , Humanos , Hipospadia/cirurgia , Masculino , Pais , Projetos de PesquisaRESUMO
In the course of human history few scientific breakthroughs can rival the importance of the discovery of DNA. Our ever increasing ability to unravel the secrets contained in this molecule allow new insight in to the etiology and eventual treatment of human conditions ranging from congenital structural disorders to cancer. It is the focus of this article to touch upon sequencing technologies and their potential to provide information that can revolutionize healthcare.
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Urologia , Criança , Exoma , HumanosRESUMO
INTRODUCTION: Gonadal management in androgen insensitivity syndrome (AIS) patients has been controversial due to low risk of testicular cancer. Our study evaluated the role of ultrasound (US) in screening for malignancy in retained gonads in AIS patients. METHODS: This was a retrospective study (2001-2020) of gonadal US in patients with AIS. Demographics and clinical information were retrieved from the medical records. US studies were reviewed for nodule presence, size, echotexture, and change on follow-up studies. When available, pathology correlation was performed. Two-tailed t-test was used to compare age and development of nodules clinically or on US examination. RESULTS: 13 patients were included with a median age was 9.9 years (range 3.8-18.4 years). In 11 patients, gonads were in the inguinal canals on either initial or follow-up US. No nodules were palpable on physical examination, but nodules were detected in ten testicles by US in five of 13 patients (41.7%). Presence of nodules was significantly (p = 0.0038) associated with older age. The largest nodule size varied from 0.4 to 2.2 cm (average 0.9 ± 0.5 cm) and most (7/10, 70%) were hypoechoic. Finding testicular nodules on US led to change in management in three patients; bilateral gonadectomies, unilateral gonadectomy, and gonadal excisional biopsies (Figure). Pathology demonstrated Sertoli hamartoma in these patients, and in an additional two patients who underwent post-puberty gonadectomy. No malignancy was found in any specimen. DISCUSSION: Preservation of the gonads in children with AIS is associated with low risk for malignant transformation. The role of US surveillance of the gonads is unknown. In our series on 13 patients, most of the visualized 24 gonads (22/24, 91.7%) were localized in the groins in either the first or follow-up US studies. Nodules were detected in ten gonads in five of 13 patients (41.7%). Most of these gonads (8/10) had numerous nodules, most (7/10) were hypoechoic with average diameter of the largest nodule of 0.9 ± 0.5 cm. Pathology in 5 patients demonstrated Sertoli hamartomas in all of the gonads. No malignancy was found. In our series, gonadal nodules led to either gonadectomies or excisional biopsies in three patients. Our study has several limitations, related to the retrospective nature of the study and the small size of our series. CONCLUSION: Multiple testicular nodules were commonly detected by US in AIS patients and were not associated with malignancy. Therefore, we are concerned that US screening can lead to unnecessary excisional biopsies and orchiectomies.