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INTRODUCTION: Little is known about the best way to engage an adolescent oncology patient in decision-making. To integrate adolescent oncology patients most effectively in decision-making, it is important to understand their perceptions not only as adolescents but also as adult survivors who have had time to reflect upon their experience. The purpose of this study is to explore perceptions of survivors of pediatric cancer to better understand their attitudes toward participation in decision-making, decisional regret, and use of decision-support tools. METHODS: An electronic survey tool, containing open- and closed-ended responses, was distributed to adult cancer survivors diagnosed and treated for cancer between the ages of 9 and 18 at a Midwestern, Comprehensive Cancer Center within a tertiary care academic hospital. RESULTS: Seventy responses were received. Nearly all respondents (96%) reported that decisions made on their behalf were consistent with their desires most/all the time. Almost one-fifth felt that increased involvement would have intensified their anxiety. Eighty-five percent did not regret choices made about their cancer treatment, and 88% would have made the same choices again. Respondents desired more targeted information on the long-term impacts of treatment (i.e., infertility, memory difficulties, mental health concerns), and they highlighted the importance of communication in the decision-making process. CONCLUSIONS: Adolescents want to participate in the decision-making process in a way that accommodates their understanding of the pathology and potential impacts of treatment. Our results suggest that developing a simple intervention to help facilitate provision of such anticipatory guidance may be helpful.
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Tomada de Decisões , Neoplasias , Participação do Paciente , Humanos , Adolescente , Masculino , Feminino , Participação do Paciente/psicologia , Neoplasias/psicologia , Neoplasias/terapia , Criança , Sobreviventes de Câncer/psicologia , Inquéritos e Questionários , EmoçõesRESUMO
OBJECTIVES: The objective of this study was to describe ethical and professional issues encountered and the ethical and professional values cited by medical students during their critical care clerkship, with a comparison of issues encountered before and during the coronavirus disease 2019 (COVID-19) pandemic. METHODS: In this single-center, retrospective mixed-methods study, two investigators at a midwestern US academic medical center performed qualitative content analysis on reflections written by fourth-year medical students about ethical and professional issues encountered during their critical care rotations between March 2016 and September 2021. We also analyzed the ethical/professional values mentioned in their reflections. Descriptive and inferential (χ2) statistics were performed to examine differences in issues and values cited before and during the pandemic. RESULTS: Respondents highlighted several key themes identified in prior studies, including decision making (64.1%), communication between clinicians and families (52.2%), and justice-related issues (32.1%), as well as interdisciplinary communication (25.7%) and issues related to the role of students in the intensive care unit (6.1%). Six novel subthemes were identified in this group, predominantly related to resource availability and end-of-life care. Of 343 reflections, 69% were written before the pandemic. Analysis of ethical and professional issues before and during COVID were notable for several significant differences, including increased discussion of inadequate tools/supplies/equipment (1.3% before vs 17.6% during, P = 0.005) and/or access to care (3.9% before vs 17.6% during, P = 0.03) and increased concerns about the tension between law and ethics (21.2% before vs 41.2% during, P = 0.028). Primacy of patient welfare (49.8% before vs 47.2% during, P = 0.659) and patient autonomy (51.1% before vs 38.9% during, P = 0.036) were the most commonly cited ethical principles in both time frames, often discussed concurrently and in tension. CONCLUSIONS: Although the COVID-19 pandemic was associated with increased reflection by medical students about resources in the intensive care unit, their perception of ethical issues arising in critical illness remained largely focused on enduring challenges in shared decision-making. These findings should be considered when developing ethics curricula for critical care rotations.
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COVID-19 , Estudantes de Medicina , Humanos , Ética Médica , Pandemias , Estudos Retrospectivos , COVID-19/epidemiologia , Cuidados CríticosRESUMO
INTRODUCTION: Parents of children with cancer describe interactions with clinicians as emotionally distressing. Patient engagement in treatment discussions decreases decisional conflict and improves decision quality which may limit such distress. We have shown that parents prefer to engage surgeons by asking questions, but parents may not know what to ask. Question Prompt Lists (QPLs), structured lists of questions designed to help patients ask important questions, have not been studied in pediatric surgery. We developed a QPL designed to empower parents to ask meaningful questions during pediatric surgical oncology discussions. We conducted a mixed methods analysis to assess the acceptability, appropriateness, and feasibility of using the QPL. METHODS: Key stakeholders at an academic children's hospital participated in focus groups to discuss the QPL. Focus groups were recorded and transcribed. Participants were surveyed regarding QPL acceptability, appropriateness, and feasibility. Thematic content analysis of transcripts was performed. RESULTS: Four parents, five nurses, five nurse practitioners, five oncologists, and four surgeons participated. Seven key themes were identified: (1) QPL as a tool of empowerment; (2) stick to the surgical details; (3) QPLs can impact discussion quality; (4) time consuming, but not overly disruptive; (5) parental emotion may impact QPL use; (6) provide QPLs prior to surgical consultation in both print and digital formats; and (7) expansion of QPLs to other disciplines. Over 70% of participants agreed that the QPL was acceptable, appropriate, and feasible. CONCLUSIONS: Our novel QPL is acceptable, appropriate, and feasible to use with parents of pediatric surgical oncology patients.
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Neoplasias , Oncologia Cirúrgica , Humanos , Criança , Comunicação , Relações Médico-Paciente , Oncologia , Participação do Paciente , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Shared decision-making, with an emphasis on patient autonomy, is often advised in healthcare decision-making. However, this may be difficult to implement in emergent settings. We have previously demonstrated that when considering emergent operations for their children, parents prefer surgeon guidance as opposed to shared decision-making. Here, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. METHODS: Parents of paediatric patients who underwent surgery over the past 5 years at a University-based, tertiary children's hospital for cancer, an emergent operation while in the neonatal intensive care unit (NICU) or extracorporeal membrane oxygenation (ECMO) were invited to complete a 60-min semi-structured interview. Interviews were digitally recorded and transcribed verbatim. Thematic content analysis was performed via deductive and inductive analysis. An iterative approach to thematic sampling/data analysis was used. RESULTS: Thematic saturation was achieved after 12 interviews (4 cancer, 5 NICU and 3 ECMO). Five common themes were identified: (1) recommendations from surgeons are valuable; (2) 'lifesaving mode': parents felt there were no decisions to be made; (3) effective ways of obtaining information about treatment; (4) shared decision-making as a 'dialogue' or 'discussion' and (5) parents as a 'valued voice' to advocate for their children. CONCLUSIONS: When engaging in decision-making regarding emergent surgical procedures for their children, parents value a surgeon's recommendation. Parents felt that discussion or dialogue with surgeons defined shared decision-making, and they believed that the opportunity to ask questions gave them a 'valued voice', even when they felt there were no decisions to be made. PATIENT OR PUBLIC CONTRIBUTION: For this study, we interviewed parents of paediatric patients who had undergone emergent operations to better understand parental decision-making preferences. Parents thus provided all the data for the study.
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Neoplasias , Cirurgiões , Recém-Nascido , Humanos , Criança , Tomada de Decisões , Pais , Tomada de Decisão Compartilhada , Pesquisa QualitativaRESUMO
A 2-year-old boy presented with a large cystic and solid chest mass arising from the lung, radiographically consistent with pleuropulmonary blastoma (PPB). He underwent right lower lobectomy with resection of a well-circumscribed, mixed solid and cystic mass. The solid areas were composed of cords and nests of tumor cells in the myxoid stroma and retiform foci whose pathologic and immunophenotypic findings were consistent with a sex cord-stromal tumor with features of a Sertoli-Leydig cell tumor. Tumor testing showed a pathogenic variant in the DICER1 RNase IIIb hotspot domain. Family history was suggestive of DICER1 germline pathogenic DICER1 variation in absence of a detectable germline variant. He received 12 cycles of chemotherapy with ifosfamide, vincristine, dactinomycin and doxorubicin (IVADo) and surgery with complete response. One year after completion of chemotherapy, imaging studies showed concern for recurrence confirmed by thorascopic biopsy of a pleural-based mass. He is currently receiving cisplatin-based chemotherapy with reduction in tumor size. Review of the literature showed no similar cases; however, review of our pathology files revealed a single similar case of anterior mediastinal Sertoli cell tumor in a 3-year-old girl.
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Blastoma Pulmonar , Tumor de Células de Sertoli-Leydig , Pré-Escolar , RNA Helicases DEAD-box/genética , Feminino , Mutação em Linhagem Germinativa , Humanos , Masculino , Blastoma Pulmonar/tratamento farmacológico , Blastoma Pulmonar/genética , Ribonuclease III/genética , Tumor de Células de Sertoli-Leydig/tratamento farmacológico , Tumor de Células de Sertoli-Leydig/genéticaRESUMO
BACKGROUND: Little data exists regarding decision-making preferences for parents and surgeons in pediatric surgery. Here we investigate whether parents and surgeons have similar decision-making preferences as well as which factors influence those preferences. Specifically, we compare parents' and surgeons' assessments of the urgency and complexity of pediatric surgical scenarios and the impact of their assessments on decision-making preferences. METHODS: A survey was emailed to parents of patients evaluated in a university-based pediatric surgery clinic and surgeons belonging to the American Pediatric Surgical Association. The survey asked respondents to rate 6 clinical vignettes for urgency, complexity, and desired level of surgeon guidance using the Controlled Preferences Scale (CPS). RESULTS: Regarding urgency, parents were more likely than surgeons to rate scenarios as emergent when cancer was involved (parents: 68.8% cancer vs. 29.5% non-cancer, p < .001; surgeons: 19.2% cancer vs. 25.4% non-cancer, p = .051). Parents and surgeons were more likely to rate a scenario as emergent when a baby was involved (parents: 45.2% baby vs. 36.2% child, p = .001; surgeons: 28.0% baby vs. 14.0% child, p < .001). Regarding decision-making preferences, parents and surgeons had similar CPS scores (2.56 vs. 2.72, respectively). Multivariable analysis showed parents preferred more surgeon guidance when scenarios involved a baby (OR 1.22; 95% CI 1.08-1.37; p < 0.01) or a cancer diagnosis (OR 1.29; 95% CI 1.11-1.49; p < 0.01), and that both parents and surgeons preferred more surgeon guidance when a scenario was considered emergent (parents: OR 1.81; 95% CI 1.37-2.38, p < 0.001; surgeons: OR 2.48 95% CI 1.76-3.49, p < 0.001). CONCLUSIONS: When a pediatric patient is a baby or has cancer, parents are more likely then surgeons to perceive the clinical situation to be emergent, and both parents and surgeons prefer more surgeon guidance in decision-making when a clinical scenario is considered emergent. More research is needed to understand how parents' decision-making preferences depend on clinical context.
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Neoplasias , Cirurgiões , Criança , Tomada de Decisões , Humanos , Lactente , Pais , Inquéritos e QuestionáriosRESUMO
PURPOSE OF REVIEW: As we have refined our extracorporeal membrane oxygenation (ECMO) capabilities and enhanced our ability to care for children with illnesses previously deemed lethal, the patient populations for whom ECMO is a medically appropriate intervention have expanded. Such expansion has prompted consideration of evolving ethical issues. In this review, we highlight several of the emerging ethical issues in pediatric ECMO. RECENT FINDINGS: Expansion of ECMO into increasingly diverse pediatric populations has prompted several ethical questions. First, some have found that there are specific clinical settings in which ECMO ought to be obligatory. Second, expanded use of ECMO may prompt disagreements among healthcare providers or between providers and family members regarding decisions about decannulation. Finally, analysis of the ethical challenges associated with integration of other disruptive healthcare modalities into patient care, will allow us insight into how to assure ethical expansion of pediatric ECMO. SUMMARY: Expansion of pediatric ECMO highlights several ethical issues including whether ECMO is ever ethically obligatory, how to ethically decannulate a patient when survival is deemed unlikely, and how to guide expansion of pediatric ECMO based upon lessons learned from the implementation of other disruptive healthcare interventions into practice.
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Cuidados Críticos , Tomada de Decisões , Oxigenação por Membrana Extracorpórea/ética , Pessoal de Saúde/psicologia , Criança , Oxigenação por Membrana Extracorpórea/métodos , Humanos , PediatriaRESUMO
BACKGROUND: Many suggest that shared decision-making (SDM) is the most effective approach to clinical counseling. It is unclear if this applies to surgical decision-making-especially regarding urgent, highly-morbid operations. In this scoping review, we identify articles that address patient and surgeon preferences toward SDM in surgery. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews (PRISMA-ScR) to develop our protocol. Medline, EMBASE, and Cochrane databases were searched from inception through 11.2017. Title/abstract review identified peer-reviewed, empirical articles that addressed patient/surgeon preferences toward SDM in surgery. Identified articles underwent full review by two independent investigators. We addressed the following questions: (1) What is known from existing empirical evidence about patients' and/or surgeons' surgical decision-making preferences? (2) Why might patients and/or surgeons prefer SDM? (3) Does acuity of intervention impact surgical decision-making preferences? Outcome measures included study methods, surgical specialty, diagnosis, study location/setting, type/number of subjects, acuity of intervention, surgeon/patient decision-making preferences, and factors associated with favoring SDM. Data was analyzed in Microsoft Excel. RESULTS: 20,359 articles were identified with 4988 duplicates, yielding 15,371 articles for title/abstract review. 74 articles were included in final analysis. 68% of articles discussed oncologic decision-making. 46% of these focused on breast cancer. 92% of articles included patients, 22% included surgeons. 75% of articles found surgeons favored SDM, 25% demonstrated surgeons favored surgeon guidance. 54% of articles demonstrated patients favored SDM, 35% showed patients favored surgeon guidance, 11% showed patients preferred independent decision-making. The most common factors for patients favoring SDM included female gender, higher education, and younger age. For surgeons, the most common factors for favoring SDM included limited evidence for a given treatment plan, multiple treatment options, and impact on patient lifestyle. No articles evaluated decision-making preferences in an emergent setting. CONCLUSIONS: There has been limited evaluation of patient and surgeon preferences toward SDM in surgical decision-making. Generally, patients and surgeons expressed preference toward SDM. None of the articles evaluated decision-making preferences in an emergent setting, so assessment of the impact of acuity on decision-making preferences is limited. Extension of research to complex, emergent clinical settings is needed.
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Tomada de Decisão Compartilhada , Participação do Paciente , Preferência do Paciente/psicologia , Relações Médico-Paciente , Cirurgiões , Idoso , Tomada de Decisões , Feminino , Humanos , MasculinoRESUMO
BACKGROUND: Data regarding ethical issues encountered by medical students during the surgical clerkship are sparse. Identification of such issues facilitates development of an ethics curriculum that ensures student preparation for issues most frequently encountered on the surgical rotation. To better understand these issues, we performed content analysis of reflections written by medical students about ethical issues encountered during their surgical clerkship. MATERIALS AND METHODS: All medical students on the surgical clerkship at a university hospital from 4/2017 to 6/2018 submitted a written reflection regarding an ethical issue encountered during the clerkship. Two investigators performed content analysis of each reflection. References to ethical principles (beneficence, nonmaleficence, justice, autonomy) were tabulated. Ethical issues were classified into main categories and subcategories, based on a modified version of a previously published taxonomy. RESULTS: 134 reflections underwent content analysis. Nonmaleficence was the most frequently mentioned ethical principle. 411 specific ethical issues were identified. Ethical issues were distributed across ten main categories: decision-making (28%), communication among health care team members (14%), justice (12%), communication between providers, patients, and families (9%), issues in the operating room (9%), informed consent (9%), professionalism (5%), supervision/student-specific issues (5%), documentation (1%), and miscellaneous/other (8%). We identified two ethical issues infrequently discussed in previous reports: delivery of efficient yet high-quality care and poor communication between services/consultants. CONCLUSIONS: Students encounter diverse ethical issues during their surgical clerkships. Ethical and contextual considerations related to these issues should be incorporated into a preclinical/clinical surgical ethics curriculum to prepare students to understand and engage the challenges they face during the clerkship.
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Estágio Clínico/ética , Educação de Graduação em Medicina/organização & administração , Ética Médica/educação , Cirurgia Geral/educação , Estudantes de Medicina/psicologia , Adulto , Currículo , Educação de Graduação em Medicina/ética , Feminino , Cirurgia Geral/ética , Humanos , Masculino , Adulto JovemRESUMO
PURPOSE OF REVIEW: Rapid advancement in the field of pediatric surgery has resulted in unprecedented opportunities to advance the care of children. However, assuring that the highest quality, most appropriate care is available to all pediatric patients remains challenging. Regionalization of care has been proposed as a means of obtaining this critical goal. In this review, we discuss the ethical challenges associated with regionalization of pediatric surgical care. RECENT FINDINGS: Regionalization of pediatric surgical care is associated with improved patient outcomes. Over half of pediatric surgeons favor regionalization of care. Despite these findings, regionalization of care may be associated with inequitable distribution of resources, financial and emotional burdens for patients and families, and surgeon dissatisfaction and technical decline. SUMMARY: Regionalization of pediatric surgical care is fraught with complex ethical issues. Development of a system of pediatric surgery networks may offer a solution to these challenges.
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Pediatria , Especialidades Cirúrgicas , Criança , Geografia , Humanos , Pediatria/ética , Qualidade da Assistência à Saúde , Especialidades Cirúrgicas/éticaRESUMO
BACKGROUND: Shared decision-making (SDM) is touted as the preferred approach to clinical counseling. However, few data exist regarding whether patients prefer SDM over surgeon-guided discussions for complex surgical decision-making. Even fewer data exist regarding surgeon preferences. Such issues may be especially pronounced in pediatric surgery given the complex decision-making triad between patients/parents and surgeons. The objective of this systematic review was to evaluate patient/parent and surgeon attitudes toward SDM in pediatric surgery. METHODS: A systematic review of English language articles in Medline, EMBASE, and Cochrane databases was performed. Inclusion and exclusion criteria were predefined. Text screening and data abstraction were performed by two investigators. RESULTS: Seven thousand five hundred eighty-four articles were screened. Title/abstract review excluded 7544 articles, and full-text review excluded four articles. Thirty-six articles were identified as addressing patient/parent or surgeon preferences toward SDM in pediatric surgery. Subspecialties included Otolaryngology (33%), General Surgery (30%), Plastics (14%), Cardiac (11%), Urology (8%), Neurosurgery (6%), Orthopedics (6%), and Gynecology (3%). Most studies (94%) evaluated elective/nonurgent procedures. The majority (97%) concentrated on patient/parent preferences, whereas only 22% addressed surgeon preferences. Eleven percent of studies found that surgeons favored SDM, and 73% demonstrated that patients/parents favored SDM. CONCLUSIONS: Despite recommendations that SDM is the preferred approach to clinical counseling, our systematic literature review shows that few studies evaluate patient/parent and surgeon attitudes toward SDM in pediatric surgery. Of these studies, very few focus on complex, urgent/emergent decision-making. Further research is needed to understand whether patients/parents, as well as surgeons, may prefer a more surgeon-guided approach to decision-making, especially when surgery is complex or taking place in urgent/emergent settings.
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Tomada de Decisões , Pais/psicologia , Pacientes/psicologia , Pediatria , Cirurgiões/psicologia , HumanosRESUMO
Objectives: Many children undergo surgery or an invasive procedure during their terminal hospital admission.1 The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. Methods: A retrospective single institution chart review was performed for patients age 14 days to 18 years with chronic conditions who died while inpatient from 2013-2017. Data was gathered on demographics, primary diagnosis, intubation status, palliative care involvement, duration of hospital stay, length of palliative care involvement, and total number of procedures. Negative binomial regression was used to assess association with number of procedures. Results: 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. Conclusions: Children undergo a significant number of surgical procedures during their terminal hospitalization. This may be influenced by age, intubation status, and length of stay. Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.
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Cuidados Paliativos , Doente Terminal , Humanos , Criança , Masculino , Feminino , Estudos Retrospectivos , Cuidados Paliativos/estatística & dados numéricos , Lactente , Pré-Escolar , Adolescente , Recém-Nascido , Doente Terminal/estatística & dados numéricos , Tempo de Internação/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricosRESUMO
OBJECTIVE: Here, we determine how formula feeding impacts the gut microbiota and host transcriptome. BACKGROUND: Formula-fed (FF) infants are at risk for diseases that involve complex interactions between microbes and host immune elements such as necrotizing enterocolitis. The aims of this study were to simultaneously examine the microbiota and host transcriptional profiles of FF and maternal-fed (MF) mice to evaluate how diet impacts gut colonization and host genes. METHODS: After 72 hours of FF or MF, colonic tissue was collected. 16S ribosomal RNA was sequenced with Roche GS-FLX (Genome Sequencer-FLX) pyrosequencing. Operational taxonomical unit clustering, diversity analysis, and principal coordinate analysis (PCA) were performed. Complementary DNA libraries were sequenced by Solexa. Reads were annotated by BLAST (Basic Local Alignment Search Tool) search against mouse RNA database [National Center for Biotechnology Information (NCBI) build-37] and functionally classified using the KOG (Eukaryotic Orthologous Groups) database (NCBI). RESULTS: Firmicutes (P < 0.001) was the dominant phylum in MF pups, whereas Proteobacteria (P < 0.001) and Bacteroidetes (P < 0.05) were dominant in FF mice. On the genus level, FF mice had increased Serratia (P < 0.001) and Lactococcus (P < 0.05) whereas MF mice had increased Lactobacillus (P < 0.001). PCA confirmed clustering by diet. Solexa sequencing demonstrated different (P < 0.05) messenger RNA transcript levels in 148 genes. Heme oxygenase 1 (P < 0.01), an oxidative stress marker, was increased 25-fold in FF mice. In addition, decreased vinculin (P < 0.05), a cytoskeletal protein associated with adherens junctions in FF pups suggested impaired gut structural integrity. Diet also impacted immune regulation, cell cycle control/gene expression, cell motility, and vascular function genes. CONCLUSIONS: FF shifted gut microbiota and structural integrity, oxidative stress, and immune function genes, presumably increasing vulnerability to disease in FF mice. Interrogation of microbial and host gene expression in FF neonates may offer new insight on how diet affects disease pathogenesis.
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Colo/imunologia , Colo/microbiologia , Substitutos do Leite , Leite Humano , Ração Animal , Animais , Animais Recém-Nascidos , DNA Complementar/genética , Biblioteca Gênica , Mucosa Intestinal/imunologia , Metagenoma/imunologia , Camundongos , Camundongos Endogâmicos C3H , Estresse Oxidativo/imunologia , Análise de Componente Principal , Receptores de Quimiocinas/metabolismo , TranscriptomaRESUMO
PURPOSE OF REVIEW: Necrotizing enterocolitis (NEC) continues to be a major cause of morbidity and mortality in low birth weight infants. Although decades of research point to a role for gut bacteria in the pathogenesis of the disease, the exact relationship between microbes and NEC has not been elucidated. In this review, we describe recent advances in the use of molecular methods to compare gut bacteria in infants with and without NEC. RECENT FINDINGS: Our understanding of how bacteria contribute to NEC pathogenesis has been limited by the use of traditional, culture-based investigations. Recent advances in microbial ecology and DNA sequencing have made it possible to comprehensively study gut bacterial populations and to understand their physiologic importance. Several studies have identified differences in the microbiota among infants with and without NEC, but the findings have often varied across studies. SUMMARY: To date, no single change in the gut microbiota has definitively been identified as a risk factor or cause of NEC. The findings at present suggest that NEC does not result from growth of a single causative pathogen, but rather that the disease results from a generalized disturbance of normal colonization patterns in the developing gut.
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Enterocolite Necrosante/microbiologia , Doenças do Prematuro/microbiologia , Intestinos/microbiologia , Microbiota , Criança , Enterocolite Necrosante/terapia , Fezes/microbiologia , Interações Hospedeiro-Patógeno , Humanos , Recém-Nascido , Recém-Nascido Prematuro , Doenças do Prematuro/terapia , Probióticos/uso terapêuticoRESUMO
BACKGROUND: Ninety percent of parents of pediatric oncology patients report distressing, emotionally burdensome healthcare interactions. Assuring supportive, informative treatment discussions may limit parental distress. Here, we interview parents of pediatric surgical oncology patients to better understand parental preferences for surgical counseling. METHODS: We interviewed 10 parents of children who underwent solid tumor resection at a university-based, tertiary children's hospital regarding their preferences for surgical discussions. Thematic content analysis of interview transcripts was performed using deductive and inductive methods. RESULTS: Three main themes were identified: (1) the emotional burden of a pediatric cancer diagnosis; (2) complexities of treatment discussions; (3) collaborative engagement between parents and surgeons. Within the collaborative engagement theme, there were four sub-themes: (1) variable informational needs; (2) parents as advocates; (3) parents as gatekeepers of information delivery to their children, family, friends, and community; (4) parental receptivity to structured guidance to support treatment discussions. Two cross-cutting themes were identified: (1) perception that no treatment decision needed to be made regarding surgery and (2) reliance on diverse support resources. CONCLUSIONS: Parents feel discussions with surgeons promote informed involvement in their child's care, but they recognize that there may be few decisions to make regarding surgery. Even when parents perceive that there are there are no decisions to make, they prioritize asking questions to advocate for their children. The emotional burden of a cancer diagnosis often prevents parents from knowing what questions to ask. Merging this data with our prior pediatric surgeon interviews will facilitate development of a novel decision support tool that can empower parents to ask meaningful questions. LEVEL OF EVIDENCE: III.
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Neoplasias , Cirurgiões , Criança , Humanos , Pais/psicologia , Neoplasias/cirurgia , Poder Psicológico , Pesquisa Qualitativa , Tomada de DecisõesRESUMO
BACKGROUND: In our prior analysis of parental preferences for discussions with pediatric surgeons, we identified that parents prefer more guidance from surgeons when discussing cancer surgery, emergency surgery, or surgery for infants, and they prefer to engage surgeons by asking questions. In this study, we investigate surgeon preferences for decision making discussions in pediatric surgery. METHODS: We conducted a thematic content analysis of interviews of pediatric surgeons regarding their preferences for discussing surgery with parents. Board certified/board eligible pediatric surgeons who had been in practice for at least one year and spoke English were eligible. Fifteen surgeons were invited, and twelve 30-minute semi-structured interviews were completed (80%). Interviews were recorded and transcribed. Thematic content analysis was performed using deductive and inductive methods. RESULTS: Data saturation was achieved after 12 interviews [6 women (50%), median years in practice 6.25, 10 in academic practice (83%), 8 from Midwest (67%)]. 5 themes emerged: (1) Collaboration to promote parental engagement; (2) "Cancer is distinct but not unique;" (3) "Read the room:" tailoring discussions to specific parental needs; (4) Perceived role of the surgeon; (5) Limited experience with decision support tools in pediatric surgery. CONCLUSIONS: Pediatric surgeons prefer a collaborative approach to counseling that engages parents through education. They prioritize tailoring discussions to meet parental needs. Few have utilized decision support tools, however most expressed interest. Insight gained from our work will guide development of a decision support tool that empowers parental participation in counseling for pediatric surgery. LEVEL OF EVIDENCE: III.
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Especialidades Cirúrgicas , Cirurgiões , Lactente , Criança , Humanos , Feminino , Tomada de Decisões , Cirurgiões/psicologia , Aconselhamento , Pais/psicologia , Pesquisa QualitativaRESUMO
The response of the health care system to pediatric surgical patients has been dramatically altered by the coronavirus disease 2019 pandemic. Such changes have affected children, families, and the clinicians who care for them. In this review, we highlight some of the ethical issues faced by pediatric surgical patients and pediatric surgeons during the coronavirus disease 2019 pandemic, including the transition to public health ethics, scarcity of resources, exacerbation of disparities, moral distress for pediatric surgeons, and shifting reliance on telemedicine and other remote means of communication. We discuss how these issues have prompted both favorable and unfavorable changes to the surgical care of children and consider which changes may have a lasting effect on pediatric surgery. [Pediatr Ann. 2022;51(8):e306-e310.].
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COVID-19 , Telemedicina , Criança , Atenção à Saúde , Humanos , Pandemias , SARS-CoV-2RESUMO
OBJECTIVE: The purpose of this review article is to summarize what is currently known about microbes associated with the human body and to provide examples of how this knowledge impacts the care of surgical patients. BACKGROUND: Pioneering research over the past decade has demonstrated that human beings live in close, constant contact with dynamic communities of microbial organisms. This new reality has wide-ranging implications for the care of surgical patients. METHODS AND RESULTS: Recent advances in the culture-independent study of the human microbiome are reviewed. To illustrate the translational relevance of these studies to surgical disease, we discuss in detail what is known about the role of microbes in the pathogenesis of obesity, gastrointestinal malignancies, Crohn disease, and perioperative complications including surgical site infections and sepsis. The topics of mechanical bowel preparation and perioperative antibiotics are also discussed. CONCLUSIONS: Heightened understanding of the microbiome in coming years will likely offer opportunities to refine the prevention and treatment of a wide variety of surgical conditions.
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Metagenoma/genética , Cirurgia Geral , Técnicas Genéticas , Humanos , Metagenoma/fisiologia , Técnicas Microbiológicas , Simbiose/fisiologiaRESUMO
Acute liver failure (ALF) results in the annual death of approximately 3.5 per million people in the United States. Unfortunately, given the marked shortage of cadaveric liver donations and the ethical questions that plague utilization of living donor liver transplantation (LDLT) for ALF, many patients with ALF die before a liver is allocated to them. In this review, we discuss how the consistent utilization of LDLT for ALF could decrease the mortality rate of ALF. Additionally, we examine a key underlying issue: is LDLT for ALF ethically appropriate?
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Falência Hepática Aguda/terapia , Transplante de Fígado/ética , Doadores Vivos/ética , Adulto , HumanosRESUMO
Providers often dispute the ethical equivalence of withholding and withdrawing care, despite theoretical frameworks that support equivalency. We highlight two cases, one where providers express concern with initiation of aggressive resuscitation and another where providers experience emotional distress from the decision to cease resuscitation. Both cases illustrate how the ethical challenges encountered can result in high levels of provider distress. Mitigation of this moral distress by team members will require an improved understanding of available evidence in the literature and active discussion by debriefing after a child dies. Medical staff and national organizations can help recognize that these patient events contribute to provider burnout and facilitate the design and support of programs to increase provider resiliency.