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Biliary atresia is a progressive cholangiopathy in neonates, which often results in liver failure. In high-income countries, initial treatment requires prompt diagnosis followed by Kasai portoenterostomy. For those with a late diagnosis, or those in whom Kasai portoenterostomy fails, liver transplantation is the only lifesaving treatment. Unfortunately, in low- and middle-income countries, timely diagnosis is a challenge and liver transplantation is rarely accessible. Here, we discuss the ethical dilemmas surrounding treatment of babies with biliary atresia in Uganda. Issues that require careful consideration include: risk of catastrophic health expenditure to families, ethical dilemmas of transplant tourism, medical risks of maintaining the transplant in a low-resourced health system, and difficult decisions encountered by the surgeon caring for these patients. Four distinct models of the patient-physician relationship are applied to biliary atresia in Uganda. These models describe differences in patient and physician roles, and patient values and autonomy. Solid organ transplantation is a rapidly evolving segment of healthcare in Uganda and ongoing policy advancements may shift ethical considerations in the future.
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BACKGROUND: Choledochal cysts are rare congenital anomalies of the biliary tree that may lead to obstruction, chronic inflammation, infection, and malignancy. There is wide variation in the timing of resection, operative approach, and reconstructive techniques. Outcomes have rarely been compared on a national level. METHODS: We queried the Pediatric National Surgical Quality Improvement Program (NSQIP) to identify patients who underwent choledochal cyst excision from 2015 to 2020. Patients were stratified by hepaticoduodenostomy (HD) versus Roux-en-Y hepaticojejunostomy (RNYHJ), use of minimally invasive surgery (MIS), and age at surgery. We collected several outcomes, including length of stay (LOS), reoperation, complications, blood transfusions, and readmission rate. We compared outcomes between cohorts using nonparametric tests and multivariate regression. RESULTS: Altogether, 407 patients met the study criteria, 150 (36.8%) underwent RNYHJ reconstruction, 100 (24.6%) underwent MIS only, and 111 (27.3%) were less than one year old. Patients who underwent open surgery were younger (median age 2.31 vs. 4.25 years, p = 0.002) and more likely underwent RNYHJ reconstruction (42.7% vs. 19%, p = 0.001). On adjusted analysis, the outcomes of LOS, reoperation, transfusion, and complications were similar between the type of reconstruction, operative approach, and age. Patients undergoing RNYHJ had lower rates of readmission than patients undergoing HD (4.0% vs. 10.5%, OR 0.34, CI [0.12, 0.79], p = 0.02). CONCLUSIONS: In children with choledochal cysts, most short-term outcomes were similar between reconstructive techniques, operative approach, and age at resection, although HD reconstruction was associated with a higher readmission rate in this study. Clinical decision-making should be driven by long-term and biliary-specific outcomes.
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Cisto do Colédoco , Laparoscopia , Criança , Humanos , Pré-Escolar , Lactente , Cisto do Colédoco/cirurgia , Melhoria de Qualidade , Anastomose em-Y de Roux/métodos , Laparoscopia/métodos , Resultado do Tratamento , Estudos RetrospectivosRESUMO
Maternal-fetal surgical interventions have become a more common part of prenatal care. This third option, beside termination or post-natal interventions, complicates prenatal decision-making: while interventions may be lifesaving, survivors may face a life with disability. Pediatric palliative care (PPC) is more than end of life or hospice care, it aims at helping patients with complex medical conditions live well. In this paper, we briefly discuss maternal-fetal surgery, challenges regarding counseling and benefit-risk evaluation, argue that PPC should be a routine part of prenatal consultation, discuss the pivotal role of the maternal-fetal surgeon in the PCC-team, and finally discuss some of the ethical considerations of maternal-fetal surgery. We illustrate this with a case example of an infant diagnosed with congenital diaphragmatic hernia (CDH).
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Terapias Fetais , Hérnias Diafragmáticas Congênitas , Lactente , Gravidez , Feminino , Humanos , Criança , Cuidados Paliativos , Hérnias Diafragmáticas Congênitas/cirurgia , Família , Diagnóstico Pré-NatalRESUMO
BACKGROUND: Although pediatric health care use declined during the coronavirus disease 2019 (COVID-19) pandemic, the impact on children with complex chronic conditions (CCCs) has not been well reported. OBJECTIVE: To describe the impact of the pandemic on inpatient use and outcomes for children with CCCs. METHODS: This multicenter cross-sectional study used data from the Pediatric Health Information System. We examined trends in admissions between January 2020 through March 2021, comparing them to the same timeframe in the previous 3 years (pre-COVID-19). We used generalized linear mixed models to examine the association of the COVID-19 period and outcomes for children with CCCs presenting between March 16, 2020 to March 15, 2021 (COVID-19 period) to the same timeframe in the previous 3 years (pre-COVID-19). RESULTS: Children with CCCs experienced a 19.5% overall decline in admissions during the COVID-19 pandemic. Declines began in the second week of March of 2020, reaching a nadir in early April 2020. Changes in admissions varied over time and by admission indication. Children with CCCs hospitalized for pneumonia and bronchiolitis experienced overall declines in admissions of 49.7% to 57.7%, whereas children with CCCs hospitalized for diabetes experienced overall increases in admissions of 21.2%. Total and index length of stay, costs, and ICU use, although statistically higher during the COVID-19 period, were similar overall to the pre-COVID-19 period. CONCLUSIONS: Total admissions for children with CCCs declined nearly 20% during the pandemic. Among prevalent conditions, the greatest declines were observed for children with CCCs hospitalized with respiratory illnesses. Despite declines in admissions, overall hospital-level outcomes remained similar.
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COVID-19 , COVID-19/epidemiologia , COVID-19/terapia , Criança , Doença Crônica , Estudos Transversais , Hospitalização , Humanos , PandemiasRESUMO
OBJECTIVES: To characterize patterns of surgery among pediatric patients during terminal hospitalizations in children's hospitals. METHODS: We reviewed patients ≤20 years of age who died among 4 424 886 hospitalizations from January 2013-December 2019 within 49 US children's hospitals in the Pediatric Health Information System database. Surgical procedures, identified by International Classification of Diseases procedure codes, were classified by type and purpose. Descriptive statistics characterized procedures, and hypothesis testing determined if undergoing surgery varied by patient age, race and ethnicity, or the presence of chronic complex conditions (CCCs). RESULTS: Among 33 693 terminal hospitalizations, the majority (n = 30 440, 90.3%) of children were admitted for nontraumatic causes. Of these children, 15 142 (49.7%) underwent surgery during the hospitalization, with the percentage declining over time (P < .001). When surgical procedures were classified according to likely purpose, the most common were to insert or address hardware or catheters (31%), explore or aid in diagnosis (14%), attempt to rescue patient from mortality (13%), or obtain a biopsy (13%). Specific CCC types were associated with undergoing surgery. Surgery during terminal hospitalization was less likely among Hispanic children (47.8%; P < .001), increasingly less likely as patient age increased, and more so for Black, Asian American, and Hispanic patients compared with white patients (P < .001). CONCLUSIONS: Nearly half of children undergo surgery during their terminal hospitalization, and accordingly, pediatric surgical care is an important aspect of end-of-life care in hospital settings. Differences observed across race and ethnicity categories of patients may reflect different preferences for and access to nonhospital-based palliative, hospice, and end-of-life care.
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Hospitalização/estatística & dados numéricos , Hospitais Pediátricos , Procedimentos Cirúrgicos Operatórios/classificação , Assistência Terminal , Adolescente , Fatores Etários , Biópsia/estatística & dados numéricos , Cateterismo/estatística & dados numéricos , Criança , Pré-Escolar , Doença Crônica/epidemiologia , Etnicidade , Feminino , Humanos , Lactente , Recém-Nascido , Classificação Internacional de Doenças , Masculino , Implantação de Prótese/estatística & dados numéricos , Fatores Raciais , Estudos Retrospectivos , Terapia de Salvação/estatística & dados numéricos , Procedimentos Cirúrgicos Operatórios/estatística & dados numéricos , Estados Unidos , Adulto JovemRESUMO
Pediatric surgeons play an essential role in prenatal consultation for congenital anomalies likely to require surgery in the newborn period. The involvement of pediatric surgeons during multi-disciplinary prenatal meetings has been an important part of the evolution of comprehensive fetal care, characterized by detailed prenatal evaluation, diagnosis, prognosis, and planned perinatal and post-natal care. Advances in fetal diagnostics and treatments, as well as complex postnatal medical care and decision-making create a broad range of care options for pregnant women with fetal surgical anomalies. Ethical challenges involve the availability and risks/benefits of maternal-fetal surgery, and diagnostic and prognostic uncertainty for the newborn. Clinical scenarios illustrate cases that pediatric surgeons may encounter in practice, with discussions highlighting the ethical principles involved as well as considerations for management.
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Diagnóstico Pré-Natal , Encaminhamento e Consulta , Criança , Feminino , Humanos , Recém-Nascido , Gravidez , Ultrassonografia Pré-NatalRESUMO
BACKGROUND AND OBJECTIVES: The coronavirus disease 2019 (COVID-19) pandemic has led to changes in health care use, including decreased emergency department visits for children. In this study, we sought to describe the impact of the COVID-19 pandemic on inpatient use within children's hospitals. METHODS: We performed a retrospective study using the Pediatric Health Information System. We compared inpatient use and clinical outcomes for children 0 to 18 years of age during the COVID-19 period (March 15 to August 29, 2020) to the same time frame in the previous 3 years (pre-COVID-19 period). Adjusted generalized linear mixed models were used to examine the association of the pandemic period with inpatient use. We assessed trends overall and for a subgroup of 15 medical All Patient Refined Diagnosis Related Groups (APR-DRGs). RESULTS: We identified 424 856 hospitalizations (mean: 141 619 hospitalizations per year) in the pre-COVID-19 period and 91 532 in the COVID-19 period. Compared with the median number of hospitalizations in the pre-COVID-19 period, we observed declines in hospitalizations overall (35.1%), and by APR-DRG (range: 8.5%-81.3%) with asthma (81.3%), bronchiolitis (80.1%), and pneumonia (71.4%) experiencing the greatest declines. Overall readmission rates were lower during the COVID-19 period; however, other outcomes, including length of stay, cost, ICU use, and mortality remained similar to the pre-COVID-19 period with some variability by APR-DRGs. CONCLUSIONS: US children's hospitals observed substantial reductions in inpatient admissions with largely unchanged hospital-level outcomes during the COVID-19 pandemic. Although the impact on use varied by condition, the most notable declines were related to inpatient admissions for respiratory conditions, including asthma, bronchiolitis, and pneumonia.
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COVID-19 , Utilização de Instalações e Serviços/tendências , Acessibilidade aos Serviços de Saúde/tendências , Hospitalização/tendências , Hospitais Pediátricos/tendências , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Adolescente , COVID-19/epidemiologia , COVID-19/prevenção & controle , Criança , Pré-Escolar , Estudos Transversais , Feminino , Humanos , Lactente , Recém-Nascido , Modelos Lineares , Masculino , Pandemias , Estudos Retrospectivos , Estados Unidos/epidemiologiaRESUMO
BACKGROUND: Omental cysts are rare, predominantly occur in children, and often initially present with symptoms masquerading as other more common intra-abdominal pathologies. In this case report, we present the case of a child with an omental cyst that originated from the lesser sac. Due to the location of this cyst, resection presented unique technical challenges that have not been described in existing literature. CASE PRESENTATION: A 4-year-old male patient presented with symptoms initially concerning for appendicitis. Ultrasound showed a normal appendix but a large volume of complex intraperitoneal fluid. Computed tomography subsequently demonstrated a large cystic structure spanning from the stomach to the bladder. The patient was taken to the operating room where a large omental cyst was found to originate from the lesser sac. The resection was difficult due to the thin wall of the cyst and the intimate association of the superior-most aspect of the cyst with the tail of the pancreas, but was ultimately successful. CONCLUSIONS: Omental cysts are rarely suspected before detection on abdominal imaging. Surgical resection is the treatment of choice, and complete resection can result in a recurrence-free postoperative course. Laparoscopic resection has been reported, but laparotomy is reasonable when a minimally invasive approach may not allow for a safe resection without rupture of the cyst. Anatomical characteristics of the cyst, as demonstrated in our case, can present challenges in the treatment of this otherwise benign entity.
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Coronavirus disease 2019 can lead to respiratory failure. Some patients require extracorporeal membrane oxygenation support. During the current pandemic, health care resources in some cities have been overwhelmed, and doctors have faced complex decisions about resource allocation. We present a case in which a pediatric hospital caring for both children and adults seeks to establish guidelines for the use of extracorporeal membrane oxygenation if there are not enough resources to treat every patient. Experts in critical care, end-of-life care, bioethics, and health policy discuss if age should guide rationing decisions.
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Infecções por Coronavirus/epidemiologia , Oxigenação por Membrana Extracorpórea/métodos , Alocação de Recursos para a Atenção à Saúde/ética , Pandemias/estatística & dados numéricos , Pneumonia Viral/epidemiologia , Síndrome Respiratória Aguda Grave/terapia , Adolescente , COVID-19 , Criança , Tomada de Decisão Clínica/ética , Infecções por Coronavirus/terapia , Cuidados Críticos/economia , Cuidados Críticos/métodos , Oxigenação por Membrana Extracorpórea/estatística & dados numéricos , Feminino , Alocação de Recursos para a Atenção à Saúde/economia , Humanos , Masculino , Avaliação das Necessidades , Pneumonia Viral/terapia , Estados UnidosRESUMO
BACKGROUND: Physicians play a key role in mitigating and managing costs in healthcare which are rising. OBJECTIVE: Conduct a cross-sectional survey in 2017, comparing results to a 2012 survey to understand US physicians' evolving attitudes and strategies concerning healthcare costs. PARTICIPANTS: Random sample of 1200 US physicians from the AMA Masterfile. MEASURES: Physician views on responsibility for costs of care, enthusiasm for cost-saving strategies, cost-consciousness scale, and practice strategies on addressing cost. KEY RESULTS: Among 1200 physicians surveyed in 2017, 489 responded (41%). In 2017, slightly more physicians reported that physicians have a major responsibility for addressing healthcare costs (32% vs. 27%, p = 0.03). In 2017, more physicians attributed "major responsibility" for addressing healthcare costs to pharmaceutical companies (68% vs. 56%, p < 0.001) and hospital and health systems (63% vs. 56%%, p = 0.008) in contrast to 2012. Fewer respondents in 2017 attributed major responsibility for addressing costs to trial lawyers (53% vs. 59%, p = 0.007) and patients (42% vs. 52%, p < 0.0001) as compared to 2012. Physician enthusiasm for patient-focused cost-containment strategies like high deductible health plans and higher co-pays (62% vs. 42%, p < 0.0001 and 62% vs. 39%, p < 0.0001, not enthusiastic, respectively) declined. Physicians reported that when they discussed cost, it resulted in a change in disease management 56% of the time. Cost-consciousness within surveyed physicians had not changed meaningfully in 2017 since 2012 (31.7 vs. 31.2). Most physicians continued to agree that decision support tools showing costs would be helpful in their practice (> 70%). After adjusting for specialty, political affiliation, practice setting, age, and gender, only democratic/independent affiliation remained a significant predictor of cost-consciousness. CONCLUSIONS AND RELEVANCE: US physicians increasingly attribute responsibility for rising healthcare costs to organizations and express less enthusiasm for strategies that increase patient out-of-pocket cost. Interventions that focus on physician knowledge and communication strategies regarding cost of care may be helpful.
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Médicos , Atitude do Pessoal de Saúde , Comunicação , Controle de Custos , Estudos Transversais , Humanos , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To describe current hospital guidelines and the opinions of extracorporeal membrane oxygenation leaders at U.S. children's hospitals concerning the use of extracorporeal membrane oxygenation for coronavirus disease 2019-positive pediatric patients. DESIGN: Confidential, self-administered questionnaire. SETTING: One hundred twenty-seven U.S. pediatric extracorporeal membrane oxygenation centers. SUBJECTS: Extracorporeal membrane oxygenation center program directors and coordinators. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: In March 2020, a survey was sent to 127 pediatric extracorporeal membrane oxygenation centers asking them to report their current hospital extracorporeal membrane oxygenation guidelines for coronavirus disease 2019-positive patients. Respondents were also asked their opinion on three ethical dilemmas including: prioritization of children over adults for extracorporeal membrane oxygenation use, institution of do-not-resuscitate orders, and the use of extracorporeal cardiopulmonary resuscitation for coronavirus disease 2019-positive patients. Forty-seven extracorporeal membrane oxygenation centers had enacted guidelines including 46 (100%) that offer venovenous-extracorporeal membrane oxygenation and 42 (89%) that offer venoarterial-extracorporeal membrane oxygenation for coronavirus disease 2019-positive pediatric patients. Forty-four centers (94%) stated that the indications for extracorporeal membrane oxygenation candidacy in coronavirus disease 2019 disease were similar to those used in other viral illnesses, such as respiratory syncytial virus or influenza. Most program directors (98%) did not endorse that children hospitalized with coronavirus disease 2019 should be made do-not-resuscitate and had variable opinions on whether children should be given higher priority over adults when rationing extracorporeal membrane oxygenation. Over half of program directors (60%) did not support the use of extracorporeal cardiopulmonary resuscitation for coronavirus disease 2019. CONCLUSIONS: The majority of pediatric extracorporeal membrane oxygenation centers have proactively established guidelines for the use of extracorporeal membrane oxygenation for coronavirus disease 2019-related illnesses. Further work is needed to help guide the fair allocation of extracorporeal membrane oxygenation resources and to determine the appropriateness of extracorporeal cardiopulmonary resuscitation.
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Infecções por Coronavirus/terapia , Oxigenação por Membrana Extracorpórea/métodos , Hospitais Pediátricos , Pneumonia Viral/terapia , Guias de Prática Clínica como Assunto , Adulto , Betacoronavirus , COVID-19 , Reanimação Cardiopulmonar , Criança , Oxigenação por Membrana Extracorpórea/legislação & jurisprudência , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Pandemias , Pediatria , Ordens quanto à Conduta (Ética Médica) , SARS-CoV-2 , Inquéritos e Questionários , Estados UnidosRESUMO
PURPOSE: To determine if there is a role for routine pouchogram before ileostomy reversal after IPAA in pediatric patients. METHODS: The medical records of pediatric patients who underwent pouchogram between 2007 and 2017 prior to ileostomy reversal after IPAA at two affiliated hospitals were reviewed for concordance between exam under anesthesia (EUA) and pouchogram findings, management of abnormal pouchogram findings, and short and long-term outcomes after ileostomy reversal. Clinical notes were used to find patient-reported symptoms at the time of pouchogram. RESULTS: Sixty patients (57% female) underwent pouchogram before planned ileostomy reversal. The median time from IPAA formation to pouchogram was 60.5â¯days (IQR: 46-77) and median follow-up was 4â¯years (IQR: 1-6). Fifty-seven patients (95%) were asymptomatic prior to reversal. Of the 40 asymptomatic patients with a normal EUA, pouchogram detected one stricture (3%), but reversal proceeded as planned. In the 16 patients with strictures on EUA, pouchogram only detected six (40%). One of 50 (2%) asymptomatic patients with normal pouchogram had anastomotic dehiscence found on EUA. Despite normal pouchogram and EUA, four asymptomatic patients required subsequent diversion for pouch-related complications between 13 and 60â¯months after ileostomy reversal. Three patients had pelvic pain prior to pouchogram; associated symptoms included perineal pain (nâ¯=â¯1) hematochezia (nâ¯=â¯1), and tenesmus (nâ¯=â¯1). EUA and pouchogram were concordant in two patients (nâ¯=â¯1 anastomotic complication, nâ¯=â¯1 pouch septum) and ileostomy reversal was delayed. In the remaining symptomatic patient, pouchogram detected an anastomotic leak where EUA detected only a stricture, and this prompted a delay in reversal. Long term, none of these patients required diversion or excision of their pouch. CONCLUSION: Routine pouchogram in asymptomatic pediatric patients does not change management and can be omitted, thereby sparing patients discomfort and unnecessary radiation exposure. Pouchogram may have diagnostic value in symptomatic patients. LEVEL OF EVIDENCE: III. TYPE OF STUDY: Study of Diagnostic Test.
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Colo , Bolsas Cólicas , Ileostomia , Proctocolectomia Restauradora , Criança , Colo/diagnóstico por imagem , Colo/cirurgia , Feminino , Humanos , Masculino , Radiografia , ReoperaçãoRESUMO
OBJECTIVE: The Management of Myelomeningocele Study (MOMS) compared prenatal with postnatal surgery for myelomeningocele (MMC). The present study sought to determine how MOMS influenced the clinical recommendations of pediatric neurosurgeons, how surgeons' risk tolerance affected their views, how their views compare to those of their colleagues in other specialties, and how their management of hydrocephalus compares to the guidelines used in the MOMS trial. METHODS: A cross-sectional survey was sent to all 154 pediatric neurosurgeons in the American Society of Pediatric Neurosurgeons. The effect of surgeons' risk tolerance on opinions and counseling of prenatal closure was determined by using ordered logistic regression. RESULTS: Compared to postnatal closure, 71% of responding pediatric neurosurgeons viewed prenatal closure as either "very favorable" or "somewhat favorable," and 51% reported being more likely to recommend prenatal surgery in light of MOMS. Compared to pediatric surgeons, neonatologists, and maternal-fetal medicine specialists, pediatric neurosurgeons viewed prenatal MMC repair less favorably (p < 0.001). Responders who believed the surgical risks were high were less likely to view prenatal surgery favorably and were also less likely to recommend prenatal surgery (p < 0.001). The management of hydrocephalus was variable, with 60% of responders using endoscopic third ventriculostomy in addition to ventriculoperitoneal shunts. CONCLUSIONS: The majority of pediatric neurosurgeons have a favorable view of prenatal surgery for MMC following MOMS, although less so than in other specialties. The reported acceptability of surgical risks was strongly predictive of prenatal counseling. Variation in the management of hydrocephalus may impact outcomes following prenatal closure.
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Hidrocefalia/cirurgia , Meningomielocele/cirurgia , Inquéritos e Questionários , Adulto , Idoso , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neurocirurgiões , Gravidez , Derivação Ventriculoperitoneal/métodos , Ventriculostomia/métodosRESUMO
Uptake of prenatal genetic testing (PGT) is low among those with sickle cell disease (SCD). This study evaluated the association of knowledge and attitudes towards prenatal genetic counseling (PGC), awareness of posttesting intervention options and omission bias with attitudes towards PGT. In addition, we explored changes among knowledge, attitudes, and awareness of options following exposure to an educational, clinical vignette among parents of children with SCD. Parents (n=44) completed a questionnaire and an educational, clinical vignette presenting a detailed account of a pregnant woman with sickle cell trait seeking PGT and PGC was read to each participant. t Tests, Spearman correlations, multivariable regressions, and moderation/mediation analyses were used. More positive attitudes towards PGC (P=0.01), lesser tendency of omission bias (P<0.01) and private insurance (P=0.04) were significant correlates of more positive attitudes towards PGT. Omission bias mediated the relationship of attitudes towards PGC and attitudes towards PGT (95% confidence interval: 0.13, 3.03). Awareness of options (P=0.02), knowledge of PGC (P=0.01) and knowledge of PGT (P=0.01) significantly improved after exposure to the clinical vignette. Patients and families with SCD can benefit from education about the importance of prenatal diagnosis to improve attitudes, address omission bias and promote more informed decisions of PGT.
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Atitude Frente a Saúde , Teste Pré-Natal não Invasivo , Pais , Traço Falciforme , Feminino , Humanos , Masculino , GravidezRESUMO
Physicians play a key role in implementing health policy, and US physicians were split in their opinions about the Affordable Care Act (ACA) soon after its implementation began. We readministered elements of a prior survey of US physicians to a similar sample to understand how US physicians' opinions of the ACA may have changed over a crucial five-year implementation period (2012-17), and we compared responses across both surveys. Of the 1,200 physicians to whom we sent a survey in the summer of 2017, 489 responded (a response rate of 41 percent). A majority of respondents (60 percent) believed that the ACA had improved access to care and insurance, yet many (43 percent) felt that it had reduced the affordability of coverage. More physicians agreed in 2017 than in 2012 that the ACA "would turn United States health care in the right direction" (53 percent versus 42 percent), despite reporting perceived worsening in several practice conditions over the same time period. After we adjusted for specialty, political party affiliation, practice setting type, perceived social responsibility, age, and sex, we found that only political party affiliation was a significant predictor of support for the ACA in the 2017 results.
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Atitude do Pessoal de Saúde , Patient Protection and Affordable Care Act , Médicos/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e QuestionáriosRESUMO
CONTEXT: Do-not-resuscitate (DNR) orders are common among children receiving palliative care, who may nevertheless benefit from surgery and other procedures. Although anesthesia, surgery, and pediatric guidelines recommend systematic reconsideration of DNR orders in the perioperative period, data regarding how clinicians evaluate and manage DNR orders in the perioperative period are limited. OBJECTIVES: To evaluate perioperative management of DNR orders at a tertiary care children's hospital. METHODS: We reviewed electronic medical records for all children with DNR orders in place within 30 days of surgery at a tertiary care pediatric hospital from February 1, 2016, to August 1, 2017. Using standardized case report forms, we abstracted the following from physician notes: 1) patient/family wishes with respect to the DNR, 2) whether preoperative DNR orders were continued, modified, or suspended during the perioperative period, and 3) whether life-threatening events occurred in the perioperative period. Based on data from these reports, we created a process flow diagram regarding DNR order decision-making in the perioperative period. RESULTS: Twenty-three patients aged six days to 17 years had a DNR order in place within 30 days of 29 procedures. No documented systematic reconsideration took place for 41% of procedures. DNR orders were modified for two (7%) procedures and suspended for 15 (51%). Three children (13%) suffered life-threatening events. We identified four time points in the perioperative period where systematic reconsideration should be documented in the medical record, and identified recommended personnel involved and important discussion points at each time point. CONCLUSION: Opportunities exist to improve how DNR orders are managed during the perioperative period.
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Assistência Perioperatória , Ordens quanto à Conduta (Ética Médica) , Adolescente , Criança , Pré-Escolar , Tomada de Decisão Clínica , Fidelidade a Diretrizes , Hospitais Pediátricos , Humanos , Lactente , Recém-Nascido , Cuidados Paliativos/métodos , Assistência Perioperatória/métodos , Período Perioperatório , Centros de Atenção TerciáriaRESUMO
BACKGROUND: Prenatal surgery for myelomeningocele (MMC) has been demonstrated to have benefits over postnatal surgery. Nevertheless, prenatal surgery requires a significant emotional, physical, and financial commitment from the entire family. METHODS: Mixed methods study of parents' perceptions regarding provider communication, treatment choices, and the family impact of having a child with MMC. RESULTS: Parents of children with MMC (n= 109) completed questionnaires. Parents were well informed and reported gathering information about prenatal surgery from a wide range of sources. After a fetal diagnosis of MMC, most learned about their options from their obstetrician, although one-third were not told about the option of prenatal surgery. About one-fourth of these parents felt pressure to undergo one particular option. Half of parents said that having a child with MMC has had a positive impact on them and their family, while the other half indicated that having a child with MMC has had both positive and negative impacts. The most commonly noted positive impacts were changes in parental attitudes, as well as having new opportunities and relationships. The most frequently reported negative impacts concerned relational and financial strain. The vast majority of parents indicated that they would still undergo prenatal surgery if they could travel back in time with their present knowledge. CONCLUSIONS: A better understanding of the parental experiences and perspectives following prenatal surgery will play an important role in providing overall support for parents and family members.
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Atitude Frente a Saúde , Meningomielocele/psicologia , Meningomielocele/cirurgia , Pais/psicologia , Adulto , Pré-Escolar , Aconselhamento , Feminino , Humanos , Masculino , Meningomielocele/embriologia , Gravidez , Inquéritos e Questionários , Resultado do TratamentoRESUMO
OBJECTIVE: To evaluate whether infants with congenital diaphragmatic hernia (CDH) can be safely resuscitated with a reduced starting fraction of inspired oxygen (FiO2) of 0.5. STUDY DESIGN: A retrospective cohort study comparing 68 patients resuscitated with starting FiO2 0.5 to 45 historical controls resuscitated with starting FiO2 1.0. RESULTS: Reduced starting FiO2 had no adverse effect upon survival, duration of intubation, need for ECMO, duration of ECMO, or time to surgery. Furthermore, it produced no increase in complications, adverse neurological events, or neurodevelopmental delay. The need to subsequently increase FiO2 to 1.0 was associated with female sex, lower gestational age, liver up, lower lung volume-head circumference ratio, decreased survival, a higher incidence of ECMO, longer time to surgery, periventricular leukomalacia, and lower neurodevelopmental motor scores. CONCLUSION: Starting FiO2 0.5 may be safe for the resuscitation of CDH infants. The need to increase FiO2 to 1.0 during resuscitation is associated with worse outcomes.