Browsing by Author "Kaefer, Martin"

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    A multi-site pilot study of a parent-centered tool to promote shared decision-making in hypospadias care
    (Elsevier, 2023) Binion, Kelsey E.; Rode, Akash Uday; Nortey, Gabrielle; Miller, Andrew D.; Misseri, Rosalia; Kaefer, Martin; Ross, Sherry; Preisser, John S.; Hu, Di; Chan, Katherine H.; Communication Studies, School of Liberal Arts
    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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    Age-based risk of end-stage kidney disease in patients with myelomeningocele
    (Elsevier, 2023-04) Adams, Cyrus M.; Misseri, Rosalia; Roth, Joshua D.; Whittam, Benjamin M.; Guckien, Zoe E.; King, Shelly J.; Kaefer, Martin; Rink, Richard C.; Szymanski, Konrad M.; Urology, School of Medicine
    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 ∼100 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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    Ask the parents: Testing the acceptability and usability of a hypospadias decision aid
    (Elsevier, 2022) Binion, Kelsey; Miller, Andrew; Misseri, Rosalia; Kaefer, Martin; Longtin, Krista; Carroll, Aaron; Wiehe, Sarah E.; Chan, Katherine H.; Communication Studies, School of Liberal Arts
    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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    Characteristics of testicular tumors in prepubertal children (age 5–12 years)
    (Elsevier, 2018) Karmazyn, Boaz; Weatherly, David L.; Lehnert, Stephen J.; Cain, Mark; Fan, Rong; Jennings, S. Gregory; Ouyang, Fangqian; Kaefer, Martin; Radiology and Imaging Sciences, School of Medicine
    Introduction Testicular tumors in children have two peaks with different types of tumors; in the first 4 years of life a third to half are benign with increased risk of malignancy during puberty. The pathology of testicular tumors between these peaks, at the age of 5–12 years, is not known. We hypothesized that because of the low level of testosterone at this time, the incidence of malignant tumors is very low. Objective To compare malignancy risk of primary testicular tumors in children in the prepubertal period (5–12 years) compared with younger (0–4 years) and pubertal (13–18 years) children. Study design We retrospectively (2002–2016) identified patients <18 years with surgery for primary testicular tumor. Patients with testicular tumor risk were excluded. Ultrasound studies were reviewed for contralateral testis volume, tumor morphology, and tumor maximal diameter, for three age groups: 0–4, 5–12, and 13–18 years. The Freeman-Halton extension of the Fisher exact probability test was adopted for categorical outcomes, and one-way ANOVA for continuous outcomes. Results Fifty-two patients (mean age 11.0 years, range 6 days–18 years) were identified. Malignant tumor prevalence significantly differed ( p < 0.01) among age groups ( Fig ).: 0–4 (72.7%, 8/11), 5–12 (0%, 0/16), and 13–18 years (44.0%, 11/25). The most common tumor types in 5–12 years were epidermoid cyst (31.3%, 5/16) and tumor mimics (37.5%, 6/16). Prevalence of cystic tumors in 5–12 year olds was not significantly different compared with other age groups. Contralateral testicular volume >4 mL (pubertal surge) significantly ( p < 0.01) differed among groups: 0–4 years (0/11), 5–12 years (3/16), and 13–18 years (19/20). In children aged 13–18 years the mean tumor maximal diameter (29.8 ± 4.4 mm) was significantly larger (p < 0.01) compared with children 5–12 years (9.3 ± 5.5 mm) and all malignant tumors had contralateral testicular volume >4 mL. Discussion We found that preadolescent children between the ages of 5 and 12 years have distinctive characteristics compared with the other age groups. Most importantly, no malignant testicular tumors were found in this age group. About a third of the children presented with an incidental testicular mass. The testicular tumors were significantly smaller (9.3 ± 6.7 mm) compared with those in children aged 13–18 years (29.8 ± 4.4 mm). There were limitations because of the retrospective nature of the study. Conclusion We found no malignant testicular tumors in children aged 5–12 years with no risk factors and prior to pubertal surge. Our study suggests use of more conservative treatment in this group of patients.
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    Comparison of Intraoperative and Early Postoperative Outcomes of Caudal Versus Dorsal Penile Nerve Blocks for Outpatient Penile Surgeries
    (Elsevier, 2017) Chan, Katherine H.; Shah, Aali; Moser, Elizabeth A.; Szymanski, Konrad; Whittam, Benjamin M.; Misseri, Rosalia; Kaefer, Martin; Rink, Richard; Cain, Mark P.; Urology, School of Medicine
    Objective To compare intraoperative and 1-hour postoperative outcomes in caudal versus dorsal penile nerve block (DPNB) patients undergoing penile surgeries. Material and Methods We performed a retrospective cohort study of males <10 years old undergoing penile procedures (2013-2015) using the Pediatric Regional Anesthesia Network, Pediatric Health Information System databases and our medical records. The primary outcome was a maximum Faces Limbs Activity Crying Consolability pain score > 3. Secondary outcomes were intraoperative/post-anesthesia care unit (PACU) narcotics, pre-incision anesthesia time, adjusted operating room charges and complications. We performed bivariate and multivariable analyses controlling for demographic/procedure characteristics and clustering by surgeon. Results Of 738 patients, (mean age 2.1 years) 74.1% had a caudal. DPNB patients were more likely to have a maximum pain score >3 (19.5% vs. 8.1%, p<0.0001), receive intraoperative (33.0% vs.2.9%, p<0.0001) and PACU narcotics (15.7% vs. 7.5% vs. p=0.0009), had shorter pre-incision anesthesia time (19.5 vs. 27.9 minutes, p<0.0001) and lower adjusted operating room charges ($9,402 vs. $12,760, p<0.0001). In a bivariate logistic regression, DPNB patients had 2.7 times the odds of a maximum pain score > 3 (95% CI 1.7- 4.4, p<0.0001) and 5.2 times the odds of intraoperative/PACU narcotic administration (95% CI 3.3-8.1, p<0.0001). In multivariable analyses, caudal patients had longer pre-incision anesthesia time (27.9 ± 7.4 vs. 19.5 ± 6.6 minutes, p<0.0001) and higher adjusted operating room charges ($12,760 ± 4077 vs. $9,402 ± 3741, p=0.01). Conclusion Caudal blocks may offer a small advantage in the immediate postoperative period although cost-effectiveness is unproven.
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    Construction of a scientific abstract
    (Elsevier, 2017) Beckers, Goedele M. A.; Kaefer, Martin; Fossum, Magdalena; Urology, School of Medicine
    An abstract is a brief summary of a research article, thesis, review, conference proceeding, or any in-depth analysis of a particular subject [1]. It is used to help the reader quickly ascertain the authors’ principle messages. The aim of this text is to strengthen the understanding of abstract writing, define its specific components, and to help the writer evaluate and complete their abstract with enhanced clarity and quality [2]. Typically, the academic research abstract contains four elements: objective and study design, materials and methods, results, and discussion/conclusions. During peer review, it is important that authors adhere to this format, as reviewers often evaluate these parts separately.
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    Hormonal suppression of mini-puberty in a neonate with mosaic 45X/46XY disorder of sexual development
    (Elsevier, 2020-05-03) Kaefer, Martin; Eugster, Erica; Medicine, School of Medicine
    Disorders of Sex Development (DSD) are some of the most controversial and challenging conditions that pediatric urologists treat. This may be especially true in mosaic 45X/46XY DSD, due to the inability to ascertain in the neonatal period which gender identity will best suit a given child with this condition. It has therefore been proposed to forgo any irreversible surgical interventions. In order to address the concern of early testosterone production in a nonsurgical manner we describe a case in which we treat a patient with a GnRH agonist to block the early physiologic rise in testosterone during the neonatal mini-puberty.
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    How to apply for a research grant: 10 tips and tricks
    (Elsevier, 2018-10) Harper, L.; Castagnetti, M.; Herbst, K.; Bagli, D.; Kaefer, Martin; Beckers, G.; Fossum, M.; Kalfa, N.; Urology, School of Medicine
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    How to more effectively determine what is true: The limits of intuition
    (Elsevier, 2020-08) Kaefer, Martin; Kalfa, Nicolas; Herbst, Katherine W.; Harper, Luke; Beckers, Goedele M. A.; Bagli, Darius; Fossum, Magdalena; Pediatrics, School of Medicine
    The plethora of scientific data and explosion of published materials often leave it challenging to develop a clear and concise overview of many scientific topics. A number of factors may contribute to our misunderstanding. It is the focus of this article to describe primary reasons for failure to establish a clear, factual and functional understanding regarding scientific areas of inquiry.