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1.
J Pediatr Urol ; 2024 Apr 09.
Artigo em Inglês | MEDLINE | ID: mdl-38688803

RESUMO

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.

2.
J Pediatr Urol ; 19(5): 643-651, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37481426

RESUMO

INTRODUCTION: Qualitative research has gained popularity in pediatric urology due to rich data and insights about quantitative results. To date, there has been no study evaluating the comprehensiveness of the reporting of these studies based on established guidelines. OBJECTIVE: The objective of this study is to perform a scoping review of the quality of reporting in recent qualitative studies in pediatric urology based on a predominant checklist, the 21-item Standards of Reporting Qualitative Research (SRQR) and identify areas for improvement. STUDY DESIGN: In accordance with the Preferred Reported Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews, we performed a systematic literature search to identify qualitative studies on pediatric urology topics published from 2015 to 2021. We used clustering technology to eliminate articles with unrelated keywords. Articles not in English and those published prior to 2015 were excluded. Two reviewers performed title/abstract screening and full text review and resolved discrepancies by consensus. We reported the median and interquartile range of total SRQR scores (maximum: 21). SRQR-reported items were summarized; overall proportion of reported items for each article was estimated. Bivariate analyses examined the association between study characteristics and SRQR tertile. Simple linear regression was performed to examine the relationship between year and SRQR score. RESULTS: Of the 2562 titles/abstracts screened, 26 studies were included. The most common topics were hypospadias and congenital adrenal hyperplasia (Summary Figure). The median total score was 18.0 of 21 possible items (interquartile range: 3). All studies reported an abstract, problem formulation, purpose/context of the study, data collection methods, integration with prior work, limitations, and ethics review board approval. Most (25/26; 96.2%) reported sampling strategy, data analysis, synthesis/interpretation of findings and links to empirical data. Less fulfilled items included: a title identifying the study as qualitative (11/26, 42.3%), qualitative approach & research paradigm (11/26, 42.3%) and researcher characteristics & reflexivity (9/26, 34.6%). There was no association between study characteristics and SRQR score. There was a statistically significant increase in the SRQR score during the study period (ß = 1.0, p < 0.0001). DISCUSSION: Studies fulfilled most SRQR checklist items. There was significant improvement in quality during the study period. Limitations include possible recency bias and exclusion of articles due to inconsistent categorizations in Pub Med. CONCLUSION: The quality and trajectory of qualitative study reporting in pediatric urology is encouraging. SRQR standards should be implemented by journals to continue improving the robustness and transparency of future qualitative manuscripts in pediatric urology.


Assuntos
Urologia , Criança , Humanos , Revisões Sistemáticas como Assunto , Pesquisa Qualitativa , Lista de Checagem , Projetos de Pesquisa
3.
J Pediatr Urol ; 19(5): 655-656, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37263834

RESUMO

We highlight five recent, high-quality, representative, qualitative articles about Spina Bifida and DSD care that contextualize their findings within the scope of a larger envisioned clinical project. Qualitative research is uniquely poised to address issues such as how to define treatment success and optimize fertility-related education and surgical experiences in DSD care. This approach is also well-suited to explore caregiver burden and financial toxicity in spina bifida care and identify areas for improvement. We encourage researchers to add a qualitative approach to their quantitative research to provide a more holistic, patient-centered view of their subject matter.


Assuntos
Disrafismo Espinal , Humanos , Pesquisa Qualitativa , Disrafismo Espinal/terapia
5.
J Pediatr Urol ; 19(3): 290.e1-290.e10, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-36801199

RESUMO

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.


Assuntos
Tomada de Decisões , Hipospadia , Criança , Masculino , Humanos , Feminino , Adolescente , Projetos Piloto , Hipospadia/cirurgia , Pais , Tomada de Decisão Compartilhada
6.
J Pediatr Urol ; 18(2): 170.e1-170.e9, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-35131196

RESUMO

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.


Assuntos
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 Pesquisa
7.
J Pediatr Urol ; 17(5): 703.e1-703.e6, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34366250

RESUMO

OBJECTIVE: To assess long-term APV and split-appendix MACE durability and to compare split and intact appendix APVs in a large patient cohort. METHODS: This retrospective cohort study included consecutive patients ≤21 years old undergoing an APV at our institution (1990-2019). Main outcomes were stomal and subfascial revisions. Kaplan Meier survival and Cox proportional hazards analysis were used. RESULTS: A total of 339 patients underwent APV creation at a median 7.4 years old (41% female vs. 59% male; 37% umbilical stoma vs. 63% other). In total, 36 patients underwent a stomal revision and 19 a subfascial revision (median channel follow-up 6.3 years). On survival analysis, the risk of stomal revision of the APV was 9.1% at 5 years, 12.6% at 10 years and 16.5% at 15 years. Risk of subfascial revision of the APV was 5.1% at 5 years, 7.0% at 10 years and 8.2% at 15 years. A split-appendix APV was performed in 118 (34.8%) of 339 patients. They had a shorter follow-up compared to those with an intact APV (5.1 vs. 7.0 years, p = 0.03). After correcting for differential follow-up time, there was no significant difference between groups for stomal revisions (HR 1.11, p = 0.76) or subfascial revisions (HR 0.80, p = 0.67, Figure). Risk of APV stomal revision was independent of stomal location and age at surgery (p ≥ 0.37). Similarly, risk of subfascial APV revision was independent of stomal location and age at surgery (p ≥ 0.18). Risk of stomal revision for split-appendix MACE channels was 16.2% at 5, 10 and 15 years (similar to split-appendix APV and all APVs, p ≥ 0.26). Risk of MACE subfascial revision was 5.5% at 5 years, 5.5% at 10 years and 14.7% at 15 years (similar to split-appendix APV and all APVs, p ≥ 0.36). COMMENT: We focused on surgical complications, as these entail the highest morbidity, however, we did not assess non-surgical, percutaneous or endoscopic management which also impact long-term outcome and patient quality of life. We did not compare the outcomes of the split-appendix MACE to an intact-appendix MACE cohort, as this patient population was not captured in this review. CONCLUSIONS: The split-appendix technique has durable long-term results for both the APV and MACE channels, which are comparable to the technique utilizing the intact appendix. Channel complications occur over the channel's lifetime, as 1 in 8 APVs in the entire cohort underwent a stomal revision and 1 in 14 APVs underwent a subfascial revision at 10 years after surgery.


Assuntos
Apêndice , Coletores de Urina , Adulto , Apêndice/cirurgia , Criança , Feminino , Seguimentos , Humanos , Masculino , Complicações Pós-Operatórias , Qualidade de Vida , Reoperação , Estudos Retrospectivos , Resultado do Tratamento , Cateterismo Urinário , Adulto Jovem
8.
J Pediatr Urol ; 16(5): 685.e1-685.e8, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32919901

RESUMO

INTRODUCTION: Based on our previous qualitative work, we created a web-based decision aid (DA) prototype to facilitate shared decision-making regarding hypospadias. OBJECTIVE: The objective of this study was to obtain rapid feedback on the prototype as part of an iterative, human-centered design process. METHODS: We conducted this study at a statewide, pediatric educational conference in May 2019, recruiting attendees by verbal/written announcements. The DA consisted of: hypospadias overview and surgery "storyboard," frequently asked questions, parent testimonials, and a values clarification exercise. Participants viewed the DA on a tablet as they participated in semi-structured, qualitative interviews covering website acceptability, usability, and preference for surgical photographs versus illustrations. Three coders used qualitative content analysis to identify themes and resolved disagreements by consensus. RESULTS: Of 295 conference attendees, all 50 who approached us agreed to participate. Responses from 49 participants were available for analysis: 67% female, ages 20-69, 65% Caucasian, 55% MDs. 96% of participants thought the website design matched its purpose; 59.1% preferred surgical illustrations, 8.2% preferred photos, 30.6% preferred both and 2.0% did not like either. Participants recommended improvements in: a) usability/accessibility (e.g. site navigation, visual layout, page length), b) content coverage (e.g. epidemiology, consequences of no/delayed surgery, lifelong risks), c) parent-centeredness (e.g. reading level/writing style) and d) implementation (provider tools, printable handouts). The Extended Summary Figure shows a revised image of the first step of a hypospadias repair based on feedback about participants' preferences for illustrations rather than photographs. DISCUSSION: The main strength of our study was the valuable feedback we obtained to inform critical revisions of the DA prototype. We also demonstrated the feasibility and efficacy of a conducting a usability evaluation of a web-based DA in a medical conference setting. One limitation of this study is that the relatively small population sampled limits generalizability and our findings may not reflect the views of all providers who care for hypospadias patients. CONCLUSIONS: The vast majority of providers thought that the design of the Hypospadias Homepage matched its purpose and most preferred surgical illustrations rather than photos to demonstrate the steps of hypospadias surgery. Based on their feedback, we plan to focus our efforts in the following areas: 1) improvement of navigation/menus, 2) reduction in the amount of text per page, 3) expansion of specific content coverage and 4) inclusion of "parent-friendly" visuals such as infographics to represent quantitative data and colorful illustrations to depict hypospadias and its surgical repair.


Assuntos
Hipospadia , Adulto , Idoso , Criança , Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Feminino , Humanos , Hipospadia/diagnóstico , Hipospadia/cirurgia , Masculino , Pessoa de Meia-Idade , Pais , Adulto Jovem
9.
J Pediatr Urol ; 16(5): 684.e1-684.e9, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32863127

RESUMO

INTRODUCTION: Many parents who choose hypospadias repair for their sons experience decisional conflict (DC) and decisional regret (DR). We previously found that parental decision-making about hypospadias surgery is a complex process characterized by cyclic information-seeking to alleviate anxiety and confusion. OBJECTIVE: The objective of this study was to engage parents of hypospadias patients and pediatric providers in the co-design of a decision aid (DA) prototype to facilitate shared decision-making about hypospadias surgery and address DC and DR. METHODS: From August 2018 to January 2019, we conducted three co-design workshops with parents of hypospadias patients, pediatric urology and general pediatric providers to discuss their recommendations for a DA prototype. Activities were audio recorded and professionally transcribed. Transcripts and worksheets were analyzed by six coders using qualitative analysis to identify key aspects of a hypospadias DA desired by stakeholders. We conducted a collaborative design and prototyping session to establish key features and requirements, created a content map visualizing this work, and then developed a DA prototype. RESULTS: Parent participants included 6 mothers and 4 fathers: 8 Caucasian, 2 African-American; median age 31 years. Providers included pediatric urology (n = 7) and general pediatric providers (n = 10): median age 47.5 years, 83.3% Caucasian, 58.3% male, 58.3% MD's and 41.7% nurse practitioners. Participants created user-friendly, interactive DA prototypes with "24/7" availability that had three key functions: 1) provide accurate, customizable, educational content, 2) connect parents with each other, and 3) engage them in a decision-making activity. The prototype consisted of five modules (Extended Summary Figure). "Hypospadias Basics" includes epidemiology and a hypospadias severity scale. "Surgery Basics" includes goals, illustrated steps, and pros/cons of surgery. "Testimonials" includes videos of parents and adolescents discussing their experiences. "Help me Decide" includes a decisional conflict scale and a decision-making activity (i.e. values clarification method). "Frequently Asked Questions" covers general hypospadias information, perioperative expectations and a review of postoperative care. DISCUSSION: To our knowledge, this is the first DA prototype developed for a pediatric urology condition using a human-centered design approach to engage many key stakeholders in the development process. One limitation of this study is the small population sampled, which limits generalizability and means that our findings may not reflect the views of all parents or pediatric providers involved in hypospadias decision-making. CONCLUSIONS: We created a parent-centered hypospadias DA prototype that provides decision support in an online, interactive format. Future directions include further testing with usability experts, providers and parents.


Assuntos
Hipospadia , Adolescente , Adulto , Criança , Tomada de Decisões , Tomada de Decisão Compartilhada , Técnicas de Apoio para a Decisão , Emoções , Feminino , Humanos , Hipospadia/cirurgia , Masculino , Pessoa de Meia-Idade , Pais
10.
J Pediatr Urol ; 16(3): 307-315, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32307325

RESUMO

INTRODUCTION: Many parents experience decisional conflict and decisional regret around hypospadias surgery. The utilization of a shared decision-making (SDM) process may mitigate these issues, however addressing the principal components of the SDM process is a complex task that requires the investment of providers. OBJECTIVE: The purpose of this study was to facilitate a discussion about SDM anchored on hypospadias with pediatric urology and general pediatric providers to explore perspectives, clinical applications and barriers to adopting SDM in clinical practice. STUDY DESIGN: We conducted two focus groups in order to engage pediatric urology and general pediatric providers in guided discussions about SDM anchored on hypospadias. All activities were audio recorded and professionally transcribed. The transcripts were analyzed by three coders using directed qualitative content analysis techniques to identify themes and relationships between themes to inform the development of an affinity diagram (Extended Summary Figure). RESULTS: Two focus groups were held; one with seven pediatric urology providers in November 2018 and one with ten general pediatric providers in January 2019 (median age 51 years, 88.2% Caucasian, 58.8% female, 70.6% physicians and 29.4% nurse practitioners). Both groups identified some of the key components of SDM including engaging families in decision-making, informing them about treatment options and clarifying values/preferences (Extended Summary Figure). They thought that SDM was useful for discussing preference-sensitive conditions (e.g. hypospadias) and addressing parental compliance. General pediatric providers also suggested that SDM helped them avoid unnecessary referrals to specialists. Both groups identified parental, provider and systemic barriers to the adoption of SDM: a) desire for paternalism, b) misperceptions about medical evidence, c) completion of parental decision-making prior to the clinical visit, d) provider bias/lack of interest and e) time constraints/productivity pressures. DISCUSSION: Providers who care for hypospadias patients are knowledgeable about SDM and its potential clinical applications. They identified several potentially modifiable barriers to the adoption of a SDM process about hypospadias surgery in a pediatric clinical setting. CONCLUSIONS: Based on feedback from providers, we plan to implement a hypospadias decision aid early in the parental decision-making process about hypospadias such as in the postpartum unit and at well-child visits in the newborn period and provide a provider training session about SDM to address the identified knowledge gaps.


Assuntos
Tomada de Decisão Compartilhada , Hipospadia , Criança , Tomada de Decisões , Feminino , Humanos , Hipospadia/cirurgia , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Pais , Pesquisa Qualitativa
11.
J Pediatr Urol ; 16(2): 166.e1-166.e8, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-32061490

RESUMO

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.


Assuntos
Hipospadia , Comportamento de Busca de Informação , Criança , Tomada de Decisões , Feminino , Humanos , Hipospadia/cirurgia , Masculino , Pais , Reprodutibilidade dos Testes
12.
J Pediatr Urol ; 16(1): 70.e1-70.e9, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31928900

RESUMO

INTRODUCTION: Parents who make decisions about hypospadias repair for their child may seek information from online platforms such as YouTube. OBJECTIVE: The purpose of this study is to evaluate the health literacy demand of hypospadias videos on YouTube using the Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V). STUDY DESIGN: We performed a YouTube search using the term "hypospadias," limiting results to the first 100 videos. We excluded videos that were <1 min or >20 min and videos that were not in English or did not include subtitles. Two evaluators independently examined videos and determined PEMAT-A/V scores for understandability and actionability (i.e., ability to identify actions the viewer can take). Videos with scores >70% are understandable or actionable. The inter-rater reliability (kappa) and intraclass correlation coefficient (ICC) of PEMAT scores were calculated. Bivariate and multivariable linear regression models assessed the association of video characteristics with respective scores. RESULTS: Of the 100 videos that were identified on YouTube, 47 (47%) were excluded leaving 53 for analysis: 14 were >20 min, 14 were <1 min, 9 had no audio or subtitles, 7 were not in English, 1 was a duplicate, 1 was unrelated to hypospadias, and 1 was deleted at the time of data analysis. Three (5.6%) were understandable (mean score 54.5%, standard deviation (SD) 14.9) and eight (15.1%) were actionable (mean score 21.8%, SD 16.6) (Extended Summary Figure). Kappa values ranged from 0.4 to 1. The ICC's were 0.55 and 0.33 for understandability and actionability, respectively. In the bivariate analysis, mean understandability scores were significantly higher for English language videos (p = 0.04), videos with animation (p = 0.002), and those produced by industry (p = 0.02). In the multivariable analysis, mean understandability scores were significantly higher for "expert testimonial" or "other" video types after adjusting for graphics type and overall tone (p = 0.04). Mean understandability scores were also significantly higher for videos with animation after adjusting for video type and overall tone (p = 0.01). Mean actionability scores were significantly higher for videos with a negative tone (p = 0.01). DISCUSSION: The vast majority of hypospadias-related YouTube content is not appropriate for users with low health literacy although certain types of videos, such those with animation and expert testimonials, scored higher on understandability than other types. CONCLUSION: Due to the lack of sufficient online informational content regarding hypospadias, we plan to engage parents of sons with hypospadias in the development of high-quality patient educational materials about hypospadias.


Assuntos
Hipospadia , Comportamento de Busca de Informação , Pais/psicologia , Mídias Sociais , Gravação em Vídeo , Criança , Letramento em Saúde , Humanos , Masculino
13.
Urology ; 128: 77, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31101310
14.
Urology ; 127: 107-112, 2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-30790649

RESUMO

OBJECTIVE: To determine the most cost-effective approach to the management of distal ureteral stones in children given the potential for recurrent renal colic during a trial of passage versus potential stent discomfort and complications of ureteroscopy. METHODS: We developed a decision tree to project costs and clinical outcomes associated with observation, medical explusive therapy (MET), and ureteroscopy for the management of an index patient with a 4-mm-distal ureteral stone. We determined which strategy would be least costly and offer the most pain-free days within 30days of diagnosis. We performed a one-way sensitivity analysis on the probability of successful stone passage with MET. We obtained probabilities from the literature and costs from the 2016 Pediatric Health Information System Database. RESULTS: Ureteroscopy was the costliest strategy but maximized the number of pain-free days within 30days of diagnosis ($5282/29 pain-free days). MET was less costly than ureteroscopy but also less effective ($615/21.8 pain-free days). Observation cost more than MET and was also less effective ($2139/15.5 pain-free days). The one-way sensitivity analysis on the probability of successful stone passage with MET demonstrated that ureteroscopy always has the highest net monetary benefits value and is therefore the recommended strategy given a fixed willingness-to-pay. DISCUSSION: Using a rigorous decision-science approach, we found that ureteroscopy is the recommended strategy in children with small distal ureteral stones. Although it costs more than MET, it resulted in more pain-free days in the first 30days following diagnosis given the faster resolution of the stone episode.


Assuntos
Litotripsia/economia , Stents/economia , Cálculos Ureterais/terapia , Ureteroscopia/economia , Conduta Expectante/economia , Análise de Variância , Criança , Pré-Escolar , Análise Custo-Benefício , Bases de Dados Factuais , Árvores de Decisões , Feminino , Humanos , Litotripsia/métodos , Masculino , Medição de Risco , Índice de Gravidade de Doença , Cálculos Ureterais/diagnóstico , Ureteroscopia/métodos
16.
Urology ; 118: 164-171, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29122625

RESUMO

OBJECTIVE: To compare intraoperative and 1-hour postoperative outcomes in caudal vs dorsal penile nerve block (DPNB) patients undergoing penile surgeries. MATERIALS AND METHODS: We performed a retrospective cohort study of boys <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 of >3. Secondary outcomes were intraoperative-postanesthesia care unit (PACU) narcotics, preincision anesthesia time, adjusted operating room charges, and complications. We performed bivariate and multivariable analyses controlling for demographic and procedural characteristics and clustering by surgeon. RESULTS: Of 738 patients (mean age 2.1 years), 74.1% had a caudal block. DPNB patients were more likely to have a maximum pain score of >3 (19.5% vs 8.1%, P <.0001), receive intraoperative (33.0% vs 2.9%, P <.0001) and PACU (15.7% vs 7.5%, P = .0009) narcotics, and had shorter preincision anesthesia times (19.5 vs 27.9 minutes, P <.0001) and lower adjusted operating room charges ($9,402 vs $12,760, P <.0001). In a bivariate logistic regression, DPNB patients had 2.7 times the odds of a maximum pain score of >3 (95% confidence interval 1.7-4.4, P <.0001) and 5.2 times the odds of intraoperative and PACU narcotic administration (95% confidence interval 3.3-8.1, P <.0001). In multivariable analyses, caudal patients had longer preincision anesthesia times (27.9 ± 7.4 vs 19.5 ± 6.6 minutes, P <.0001) and higher adjusted operating room charges ($12,760 ± 4077 vs $9,402 ± 3741, P = .01). CONCLUSION: Caudal blocks may offer a small advantage in the immediate postoperative period, although cost-effectiveness is unproven.


Assuntos
Procedimentos Cirúrgicos Ambulatórios , Bloqueio Nervoso/métodos , Dor Pós-Operatória/prevenção & controle , Pênis/cirurgia , Nervo Pudendo , Criança , Pré-Escolar , Estudos de Coortes , Humanos , Lactente , Período Intraoperatório , Masculino , Período Pós-Operatório , Estudos Retrospectivos , Resultado do Tratamento , Procedimentos Cirúrgicos Urológicos Masculinos
17.
J Pediatr Urol ; 13(2): 205.e1-205.e6, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28109798

RESUMO

INTRODUCTION: Doctors often use surgical antibiotic prophylaxis (SAP) despite limited evidence to support its efficacy. We sought to determine the association between SAP in children undergoing circumcision and the rate of perioperative adverse events. MATERIAL AND METHODS: We performed a retrospective study of males >30 days old and <18 years old who underwent circumcision from 2004 to 2014 using the Pediatric Health Information System database. We excluded inpatients and those with any concomitant procedures. We used chi-square or Fisher's exact test to determine the association between SAP and allergic reaction and any of the following within 30 days: penile reoperation, hospital visit, or surgical site infection (SSI). We performed mixed effects logistic regression controlling for age, race, insurance, and clustering of similar practice patterns by hospital. RESULTS: 84,226 patients were included: median age 2.2 years; 61.0% public insurance, 39.6% white. 8944 (10.6%) received SAP. On bivariate analysis, there were no associations between SAP and SSI (0.1% vs. 0.2%, p = 0.5), penile reoperation (0.01% vs. 0.04%, p = 0.4), or hospital visit (5.5% vs. 5.5%, p = 0.8). Patients who received SAP were more likely to have a perioperative allergic reaction than those who did not (3.5% vs. 2.9%, p = 0.0004). On multivariate analysis, those who received SAP had 1.5 times the odds of an allergic reaction (OR 1.5, 95% CI 1.3-1.7; p < 0.0001) and a hospital visit (OR 1.2, 95% CI 1.1-1.3; p = 0.0021) compared with those who did not (Table). DISCUSSION: SAP did not decrease the risk of penile reoperation or SSI. Use of SAP was associated with an increased risk of allergic reactions and hospital visits. Strengths of the study include its large sample size, which enabled detection of rare outcomes with adequate statistical power and the generalizability of our findings to many patients and other types of procedures. Limitations include the lack of outpatient data and the possibility that we could have overestimated the incidence of allergic reactions by including patients who received epinephrine for some other reason. CONCLUSIONS: We found no compelling evidence to support the use of SAP in children undergoing circumcision and it was associated with an increased risk of allergic reaction and hospital visits. This study highlights the need for specialty-specific guidelines for pediatric urologic procedures regarding the use of antibiotics for prophylaxis and for vigilant monitoring of practice variation.


Assuntos
Antibioticoprofilaxia/métodos , Circuncisão Masculina/efeitos adversos , Infecção da Ferida Cirúrgica/epidemiologia , Infecção da Ferida Cirúrgica/prevenção & controle , Distribuição por Idade , Análise de Variância , Criança , Pré-Escolar , Circuncisão Masculina/métodos , Estudos de Coortes , Bases de Dados Factuais , Humanos , Incidência , Lactente , Recém-Nascido , Modelos Logísticos , Masculino , Análise Multivariada , Complicações Pós-Operatórias/fisiopatologia , Complicações Pós-Operatórias/prevenção & controle , Estudos Retrospectivos , Medição de Risco , Estados Unidos
18.
J Urol ; 197(3 Pt 2): 944-950, 2017 03.
Artigo em Inglês | MEDLINE | ID: mdl-27821262

RESUMO

PURPOSE: Guidelines recommend surgical antibiotic prophylaxis for clean-contaminated procedures but none for clean procedures. The purpose of this study was to describe variations in surgical antibiotic prophylaxis for outpatient urological procedures at United States children's hospitals. MATERIALS AND METHODS: Using the PHIS (Pediatric Health Information System®) database we performed a retrospective cohort study of patients younger than 18 years who underwent clean and/or clean-contaminated outpatient urological procedures from 2012 to 2014. We excluded those with concurrent nonurological procedures or an abscess/infected wound. We compared perioperative antibiotic charges for clean vs clean-contaminated procedures using a multilevel logistic regression model with a random effect for hospital. We also examined whether hospitals that were guideline compliant for clean procedures, defined as no surgical antibiotic prophylaxis, were also compliant for clean-contaminated procedures using the Pearson correlation coefficient. We examined hospital level variation in antibiotic rates using the coefficient of variation. RESULTS: A total of 131,256 patients with a median age of 34 months at 39 hospitals met study inclusion criteria. Patients undergoing clean procedures were 14% less likely to receive guideline compliant surgical antibiotic prophylaxis than patients undergoing clean-contaminated procedures (OR 0.86, 95% CI 0.84-0.88, p <0.0001). Hospitals that used antibiotics appropriately for clean-contaminated procedures were more likely to use antibiotics inappropriately for clean procedures (r = 0.7, p = 0.01). Greater variation was seen for hospital level compliance with surgical antibiotic prophylaxis for clean-contaminated procedures (range 9.8% to 97.8%, coefficient of variation 0.36) than for clean procedures (range 35.0% to 98.2%, coefficient of variation 0.20). CONCLUSIONS: Hospitals that used surgical antibiotic prophylaxis appropriately for clean-contaminated procedures were likely to use surgical antibiotic prophylaxis inappropriately for clean procedures. More variation was seen in hospital level guideline compliance for clean-contaminated procedures.


Assuntos
Procedimentos Cirúrgicos Ambulatórios , Antibioticoprofilaxia/normas , Procedimentos Cirúrgicos Urológicos , Adolescente , Criança , Pré-Escolar , Estudos de Coortes , Estudos Transversais , Feminino , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , Masculino , Estudos Retrospectivos , Estados Unidos
19.
J Pediatr Urol ; 12(4): 249.e1-7, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27480466

RESUMO

OBJECTIVE: Prior studies suggest that obese patients are at increased risk for complications following continent catheterizable urinary (CCU) channel surgery. We hypothesized that postoperative weight gain increases the risk of channel angulation, difficulty catheterizing, and possible channel perforation requiring subfascial revision. The purpose of this study was to evaluate whether baseline obesity or becoming overweight/obese postoperatively was associated with a greater risk of subfascial revision. METHOD: We reviewed retrospectively an institutional database of patients who underwent CCU channel surgery between the ages of ≥2 and <20 years from January 1990 to May 2013, excluding those with continent urinary reservoirs, continent vesicostomies, and those without body mass index (BMI) data. We collected data on patient/procedure characteristics, baseline/most recent BMI, and subfascial revision(s). We used Cox proportional hazard multivariable regression to assess the association of being overweight/obese at baseline (≥85% BMI) with time to first subfascial revision, and Fisher's exact test to compare rates of subfascial revision between those who became overweight/obese and those who did not. RESULTS: Of the patients, 328/501 (65.5%) had baseline and post-baseline BMI data available: 53.4% male, 90.6% white, median age 7.4 years; median follow-up 76.4 months. Of the 328 patients, 38 (11.6%) had subfascial revisions. Baseline BMI data were available for 378 patients, and, of these, 130 (34.4%) were overweight/obese at baseline. Overweight/obese patients were more likely to undergo umbilical Monti (10% vs. 8.1%), non-umbilical spiral Monti (33.8% vs. 13.7%), and spiral umbilical Monti channels (13.8% vs. 7.3%) versus normal/underweight patients (p < 0.0001). From a multivariable Cox proportional hazard model controlling for age, BMI category, diagnosis, and ambulatory status, the hazard of subfascial revision for spiral umbilical Monti channels was 2.1× that of other channels (hazard ratio (HR) 2.1 [95% CI 1.2-3.8], p = 0.01). Fifty-one out of 328 patients (15.6%) became overweight/obese postoperatively, with 7.8% having a subfascial revision vs. 12.3% of those whose weight category decreased or remained stable (p = 0.3) (Table 1). CONCLUSIONS: Patients who were overweight/obese at baseline were more likely to have channels constructed that are at the highest risk of subfascial revision. Patients who became overweight/obese postoperatively were not at greater risk of subfascial revision. Limitations include potential bias because of differential follow-up and inaccuracy of BMI percentile as a measurement of obesity.


Assuntos
Obesidade , Complicações Pós-Operatórias/epidemiologia , Reoperação/estatística & dados numéricos , Cateterismo Urinário , Coletores de Urina , Aumento de Peso , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Obesidade/complicações , Complicações Pós-Operatórias/etiologia , Estudos Retrospectivos , Fatores de Risco , Adulto Jovem
20.
J Pediatr Urol ; 12(4): 248.e1-6, 2016 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-27270068

RESUMO

INTRODUCTION: Patients with continent catheterizable channels (CCC) may develop difficulty catheterizing postoperatively. In complex cases, endoscopic evaluation with indwelling catheter placement may be indicated, but the risk factors for subsequent formal channel revision are not well defined. The purpose of this study was to determine the risk factors for formal channel revision after attempted endoscopic management of difficulty catheterizing. MATERIALS AND METHODS: We performed an IRB-approved retrospective review of pediatric (<21 years old) patients undergoing CCC construction at our institution from 1999 to 2014 to identify patients who underwent endoscopy for difficulty catheterizing. Fisher's Exact test was used for categorical data and Mann-Whitney U test for continuous variables to examine the association between endoscopic intervention and subsequent formal revision. RESULTS: Sixty-three of 434 patients (14.5%) underwent at least one endoscopy for reported difficulty catheterizing their CCC, with 77.8% of these requiring additional intervention during endoscopy (catheter placement, dilation, etc.). Of these, almost half with functioning channels (43.5%, 27/62) were managed successfully with endoscopy without formal revision; six (22.2%) of whom underwent more than one endoscopy. These 27 patients continued to catheterize well at a median follow-up of 3.2 years (interquartile range 2.0-6.0). Patients requiring revision had a median of 1.7 years between CCC creation and first endoscopy, versus 1.6 years in those who were not revised (p = 0.60). There was no statistically significant difference between revised and non-revised channels in terms of patient age at CCC creation, underlying patient diagnosis, status of bladder neck, stomal location, or channel type (p ≥ 0.05) (see Table). CONCLUSION: Approximately half of our patients did not require a formal channel revision after endoscopic management. We did not identify any specific risk factors for subsequent formal revision of a CCC. We recommend performing at least one endoscopic evaluation for those with difficulty catheterizing prior to proceeding with formal open revision.


Assuntos
Cateteres de Demora , Cistoscopia , Reoperação , Bexiga Urinária/cirurgia , Cateterismo Urinário , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Reoperação/estatística & dados numéricos , Estudos Retrospectivos , Fatores de Risco
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