Tutku Soyer, Luca Pio, Ramon Gorter, Leopoldo Martinez, Jens Dingemann, Federica Pederiva, Anne Dariel, Elke Zani-Ruttenstock, Mohit Kakar, Nigel J. Hall
{"title":"European Pediatric Surgeons' Association Survey on Timing of Inguinal Hernia Repair in Premature Infants","authors":"Tutku Soyer, Luca Pio, Ramon Gorter, Leopoldo Martinez, Jens Dingemann, Federica Pederiva, Anne Dariel, Elke Zani-Ruttenstock, Mohit Kakar, Nigel J. Hall","doi":"10.1055/a-2297-8857","DOIUrl":"https://doi.org/10.1055/a-2297-8857","url":null,"abstract":"<p>\u0000<b>Aim</b> This article evaluates the practice patterns of European Pediatric Surgeons' Association (EUPSA) members regarding the timing of inguinal hernia (IH) repair in premature infants.</p> <p>\u0000<b>Methods</b> Online survey containing 29 questions distributed to EUPSA members during January 2023.</p> <p>\u0000<b>Results</b> A total of 180 responds were received. Overall, IH repair prior to discharge was favored by 60% of respondents when there was a history of incarceration and 56% when there was not. In the case of very/extremely premature infants (< 32 weeks) with no history of incarceration, fewer (43%) respondents postpone the surgery until after discharge. The majority of respondents cited the risk of incarceration as the reason for advocating surgery prior to discharge, whereas a reduced risk of apnea was the most cited reason for respondents who prefer delayed surgery. Open approach under general anesthesia was favored by 54% of respondents, with 27% of them preferring open approach with spinal anesthesia. Laparoscopic surgery for premature infants is used in 11% while 7% of them preferred in all premature infants including extremely/very premature ones. Contralateral side evaluation was never done by 40% of respondents and 29% only performed it only during laparoscopic repair. The majority of respondents (77%) indicated that they have an overnight stay policy for premature infants < 45 weeks of gestation.</p> <p>\u0000<b>Conclusion</b> There is variation in the practice patterns of pediatric surgeons in the treatment of IH in premature infants. Due to the concern for the high risk of incarceration, IH repair before discharge was the most prevalent practice. Lower risk of postoperative apnea was cited as the most common reason for delaying surgery. Randomized studies are required to establish the optimal timing for IH repair in premature infants.</p> ","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":"91 1","pages":""},"PeriodicalIF":1.8,"publicationDate":"2024-04-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140801732","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Daniel Rossi, Anna Löf Granström, Nadine M Teunissen, René M H Wijnen, Tomas Wester, Cornelius E J Sloots
{"title":"Bridging the Gap: A Systematic Review on Reporting Baseline Characteristics, Process, and Outcome Parameters in Rectosigmoid Hirschsprung's Disease.","authors":"Daniel Rossi, Anna Löf Granström, Nadine M Teunissen, René M H Wijnen, Tomas Wester, Cornelius E J Sloots","doi":"10.1055/a-2198-9050","DOIUrl":"10.1055/a-2198-9050","url":null,"abstract":"<p><p>The variation in standardized, well-defined parameters in Hirschsprung's disease (HSCR) research hinders overarching comparisons and complicates evaluations of care quality across healthcare settings. This review addresses the significant variability observed in these parameters as reported in recent publications. The goal is to compile a list of commonly described baseline characteristics, process and outcome measures, and to investigate disparities in their utilization and definitions. A systematic review of literature on the primary care process for HSCR was performed according to PRISMA guidelines. Relevant literature published between 2015 and 2021 was obtained by combining the search term \"Hirschsprung's disease\" with \"treatment outcome,\" \"complications,\" \"mortality,\" \"morbidity,\" and \"survival\" in Medline, Embase, and the Cochrane Library. We extracted study characteristics, reported process and outcome parameters, and patient and disease characteristics. We extracted 1,026 parameters from 200 publications and categorized these into patient characteristics (<i>n</i> = 226), treatment and care process characteristics (<i>n</i> = 199), and outcomes (<i>n</i> = 601). A total of 116 parameters were reported in more than 5% of publications. The most frequently reported characteristics were sex (88%), age at the time of surgery (66%), postoperative Hirschsprung-associated enterocolitis (64%), type of repair (57%), fecal incontinence (54%), and extent of aganglionosis (51%). This review underscores the pronounced variation in reported parameters within HSCR studies, highlighting the necessity for consistent, well-defined measures and reporting systems to foster improved data interpretability. Moreover, it advocates for the use of these findings in the development of a Core Indicator Set, complementing the recently developed Core Outcome Set. This will facilitate quality assessments across pediatric surgical centers throughout Europe.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"189-198"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"54232450","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Benchmarks for Pediatric Surgical Registries: Recommendations for the Assessment and Grading of Complications.","authors":"Omid Madadi-Sanjani, Benno M Ure","doi":"10.1055/a-2196-1755","DOIUrl":"10.1055/a-2196-1755","url":null,"abstract":"<p><p>Procedure-related registries in general surgical practice offer a platform for prospective trials, the pooling of data, and detailed outcome analysis. Recommendations by the Idea, Development, Exploration, Assessment, and Long-term follow-up (IDEAL) collaboration and Outcome4Medicine have further improved the uniform reporting of complications and adverse events.In the pediatric surgical network, disease-specific registries for rare and inherited congenital anomalies are gaining importance, fostering international collaborations on studies of low-incidence diseases. However, to date, reporting of complications in the pediatric surgical registries has been inconsistent. Therefore, the European Reference Network for Rare Inherited and Congenital Anomalies (ERNICA) recently endorsed the validation of the first severity grading system for children. The planned reform of the European Paediatric Surgical Audit (EPSA) registry, which includes the implementation of the Clavien-Madadi classification, represents a further effort to establish uniform outcome reporting.This article provides an overview of experiences with surgical registries and complication reporting, along with the potential application of this knowledge to future pediatric surgical practice.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"182-188"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49694310","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Benjamin S R Allin, George S Bethell, Nigel J Hall
{"title":"Development Methodology, Availability, and Implementation of Core Outcome Sets in Pediatric Surgery.","authors":"Benjamin S R Allin, George S Bethell, Nigel J Hall","doi":"10.1055/a-2196-1887","DOIUrl":"10.1055/a-2196-1887","url":null,"abstract":"<p><p>Core outcome sets (COSs) provide a mechanism to guide researchers and clinicians when deciding which outcomes to report in research related to a specific clinical condition or intervention. The intention behind creating a COS for a specific condition is to improve the reporting of important and meaningful outcomes, thus enhancing the relevance of research. Additionally, a COS helps facilitate comparison of outcomes between different clinical studies and reduces research waste. In this paper, we discuss the availability of COSs in the field of pediatric general surgery. We provide an overview of the methodologies used to develop a COS, including common pitfalls, and finally, we discuss COS uptake and implementation. An understanding of all these aspects is important for researchers considering developing a new COS and for those reading research where a COS has been developed or used within a study. Failure to adequately appreciate the nuances of COS development, in particular, risks fundamental flaws that may jeopardize COS validity and subsequently hinder COS uptake and implementation.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"128-136"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49694311","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Unlocking the Power of Data: Standardized Data Collection in Pediatric Surgery.","authors":"Nadine M Teunissen, Rene M H Wijnen","doi":"10.1055/a-2206-6790","DOIUrl":"10.1055/a-2206-6790","url":null,"abstract":"","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"113-114"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71523527","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The Development of the International Intestinal Failure Registry and an Overview of its Results.","authors":"Yaron Avitzur, Eric Pahl, Robert Venick","doi":"10.1055/a-2212-6874","DOIUrl":"10.1055/a-2212-6874","url":null,"abstract":"<p><p>Pediatric intestinal failure (IF) is a rare disease that represents an evolving field in pediatric gastroenterology and surgery. With only a limited number of multicenter collaborations, much of the research in pediatric IF is often confined to single-center reports with small sample sizes. This has resulted in challenges in data interpretation and left many knowledge gaps unanswered. Over the past two decades, five large multicenter collaborations, primarily from North America and Europe, have published their findings. Apart from one ongoing European adult and pediatric registry, these relatively large-scale efforts have been concluded.In 2018, the International Intestinal Failure Registry (IIFR) was initiated by the International Intestinal Rehabilitation and Transplant Association to continue these efforts and answer some of the knowledge gaps in pediatric IF. The IIFR goals are to prospectively assess the natural history of children diagnosed with IF and creating a worldwide platform to facilitate benchmarking and evidence-based interventions in pediatric IF. A pilot phase involving 204 enrolled patients was initiated in 2018 to assess the feasibility of an international IF registry and refine the study protocol and data collection forms. Following the successful completion of this phase, the current phase of the IIFR was launched in 2021. As of May 2023, the registry includes 362 prospectively followed children from 26 centers worldwide. This review provides an overview of the development, structure, and challenges of the IIFR, as well as the main findings from both the pilot and current phase.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"172-181"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10920018/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"136400549","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Olivia K C Spivack, Michaela Dellenmark-Blom, Jens Dingemann, Chantal A Ten Kate, Vuokko Wallace, Wichor M Bramer, Julia H Quitmann, Andre Rietman
{"title":"A Narrative Review of Patient-Reported Outcome Measures and Their Application in Recent Pediatric Surgical Research: Advancing Knowledge and Offering New Perspectives to the Field.","authors":"Olivia K C Spivack, Michaela Dellenmark-Blom, Jens Dingemann, Chantal A Ten Kate, Vuokko Wallace, Wichor M Bramer, Julia H Quitmann, Andre Rietman","doi":"10.1055/s-0043-1778108","DOIUrl":"10.1055/s-0043-1778108","url":null,"abstract":"<p><strong>Introduction: </strong> Patient-reported outcome measures (PROMs) can be employed in both research and clinical care to enhance our understanding of outcomes that matter to patients. This narrative review aims to describe PROM use in recent pediatric surgical research, identify and describe psychometrically robust PROMs, providing an overview of those derived from pediatric patient input, and make recommendations for future research.</p><p><strong>Materials and methods: </strong> A search was conducted to identify articles published from 2021 to August 2023 describing the availability and/or use of at least one valid or reliable PROM in children with conditions including anorectal malformations, biliary atresia, congenital diaphragmatic hernia, duodenal atresia, esophageal atresia, abdominal wall defects, Hirschsprung's disease, sacrococcygeal teratoma, and short bowel syndrome. Articles were categorized based on their objectives in applying PROMs. Psychometrically robust PROMs were identified and described.</p><p><strong>Results: </strong> Out of the 345 articles identified, 49 met the inclusion criteria. Seventeen focused on esophageal atresia and 14 on Hirschsprung's disease. Twenty-nine PROMs were identified, with 12 deemed psychometrically robust. Seven psychometrically robust PROMs were developed using patient input in the primary item generation. Most PROMs were applied to advance understanding of conditions and/or treatment and fewer were developed or psychometrically evaluated. No PROMs were assessed for their impact or incorporated into an implementation study.</p><p><strong>Conclusions: </strong> This review reveals gaps in the application of PROMs in recent pediatric surgical research. Emphasis should be placed on the development and utilization of psychometrically robust PROMs, broadening the scope of covered diseases, conducting impact assessments, and evaluating implementation strategies.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"143-161"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10920019/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139565348","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Willemijn F E Irvine, Olivia K C Spivack, Erwin Ista
{"title":"Moving toward the Development and Effective Implementation of High-Quality Guidelines in Pediatric Surgery: A Review of the Literature.","authors":"Willemijn F E Irvine, Olivia K C Spivack, Erwin Ista","doi":"10.1055/s-0043-1778020","DOIUrl":"10.1055/s-0043-1778020","url":null,"abstract":"<p><p>Applying evidence-based guidelines can enhance the quality of patient care. While robust guideline development methodology ensures credibility and validity, methodological variations can impact guideline quality. Besides methodological rigor, effective implementation is crucial for achieving improved health outcomes. This review provides an overview of recent literature pertaining to the development and implementation of guidelines in pediatric surgery. Literature was reviewed to provide an overview of sound guideline development methodologies and approaches to promote effective guideline implementation. Challenges specific to pediatric surgery were highlighted. A search was performed to identify published guidelines relevant to pediatric surgery from 2018 to June 2023, and their quality was collectively appraised using the AGREE II instrument. High-quality guideline development can be promoted by using methodologically sound tools such as the Guidelines 2.0 checklist, the GRADE system, and the AGREE II instrument. While implementation can be promoted during guideline development and post-publication, its effectiveness may be influenced by various factors. Challenges pertinent to pediatric surgery, such as limited evidence and difficulties with outcome selection and heterogeneity, may impact guideline quality and effective implementation. Fifteen guidelines were identified and collectively appraised as suboptimal, with a mean overall AGREE II score of 58%, with applicability being the lowest scoring domain. There are identified challenges and barriers to the development and effective implementation of high-quality guidelines in pediatric surgery. It is valuable to prioritize the identification of adapted, innovative methodological strategies and the use of implementation science to understand and achieve effective guideline implementation.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"115-127"},"PeriodicalIF":1.5,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11357791/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139503267","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Kylie I Holden, Ashley H Ebanks, Kevin P Lally, Matthew T Harting
{"title":"The CDH Study Group: Past, Present, and Future.","authors":"Kylie I Holden, Ashley H Ebanks, Kevin P Lally, Matthew T Harting","doi":"10.1055/s-0043-1778021","DOIUrl":"10.1055/s-0043-1778021","url":null,"abstract":"<p><p>The Congenital Diaphragmatic Hernia Study Group (CDHSG) is an international consortium of medical centers actively collecting and voluntarily contributing data pertaining to live born congenital diaphragmatic hernia (CDH) patients born and/or managed at their institutions. These data are aggregated to construct a comprehensive registry that participating centers can access to address specific clinical inquiries and track patient outcomes. Since its establishment in 1995, 147 centers have taken part in this initiative, including 53 centers from 17 countries outside the United States, with 95 current active centers across the globe. The registry has amassed data on over 14,000 children, resulting in the creation of over 75 manuscripts based on registry data to date. International, multicenter consortia enable health care professionals managing uncommon, complex, and diverse diseases to formulate evidence-based hypotheses and draw meaningful and generalizable conclusions for clinical inquiries. This review will explore the formation and structure of the CDHSG and its registry, outlining their functions, center participation, and the evolution of data collection. Additionally, we will provide an overview of the evidence generated by the CDHSG, with a particular emphasis on contributions post-2014, and look ahead to the future directions the study group will take in addressing CDH.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"162-171"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139503269","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"The French Experience with a Population-Based Esophageal Atresia Registry (RENATO).","authors":"Rony Sfeir, Madeleine Aumar, Dyuti Sharma, Julien Labreuche, Luc Dauchet, Frederic Gottrand","doi":"10.1055/a-2206-6837","DOIUrl":"10.1055/a-2206-6837","url":null,"abstract":"<p><p>This paper presented a national register for esophageal atresia (EA) started in January 2008. We report our experience about the conception of this database and its coordination. Data management and data quality are also detailed. In 2023, more than 2,500 patients with EA are included. Prevalence of EA in France was calculated at 1.8/10,000 live birth. Main clinical results are listed with scientific publications issued directly from the register.</p>","PeriodicalId":56316,"journal":{"name":"European Journal of Pediatric Surgery","volume":" ","pages":"137-142"},"PeriodicalIF":1.8,"publicationDate":"2024-04-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"71523526","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}