RESUMEN
Noninvasive ventilation (NIV) is a common modality employed to treat acute respiratory failure. Most data guiding its use is extrapolated from adult studies. We sought to identify clinical predictors associated with failure of NIV, defined as requiring intubation. This single-center retrospective observational study included children admitted to pediatric intensive care unit (PICU) between July 2014 and June 2016 treated with NIV, excluding postextubation. A total of 148 patients was included. Twenty-seven (18%) failed NIV. There was no difference between the two groups with regard to age, gender, comorbidities, or etiology of acute respiratory failure. Those that failed had higher admission pediatric risk of mortality ( p = 0.01) and pediatric logistic organ dysfunction ( p = 0.002) scores and higher fraction of inspired oxygen (FiO 2 ; p = 0.009) at NIV initiation. Failure was associated with lack of improvement in tachypnea. At 6 hours of NIV, the failure group had worsening tachypnea with a median increase in respiratory rate of 8%, while the success group had a median reduction of 18% ( p = 0.06). Multivariable Cox's proportional hazard models revealed FiO 2 at initiation and worsening respiratory rate at 1- and 6-hour significant risks for failure of NIV. Failure was associated with a significantly longer PICU length of stay (success [2.8 days interquartile range (IQR): 1.7, 5.5] vs. failure [10.6 days IQR: 5.6, 13.2], p < 0.001). NIV can be successfully employed to treat acute respiratory failure in pediatric patients. There should be heightened concern for NIV failure in hypoxemic patients whose tachypnea is unresponsive to NIV. A trend toward improvement should be closely monitored.
RESUMEN
Pediatric organ transplantation remains a life-saving therapy, with donated organs being absolutely scarce resources. Efforts to both increase pediatric organ donation authorization by families of children declared dead by neurologic criteria and mitigate perception of conflicts of interest have resulted in frequent exclusion of physicians from this process. This article provides of focused review of pediatric organ donation in the setting of brain death, explores the breadth of consequences of physician exclusion in donation authorization requests, and provides an ethical framework defending physician involvement in the organ donation process for this patient population.
Asunto(s)
Trasplante de Órganos , Médicos , Obtención de Tejidos y Órganos , Niño , Humanos , Muerte Encefálica , Donantes de TejidosRESUMEN
The management of pediatric neurosurgical disease often requires families to choose between long-term disability and premature death. This decision-making is codified by informed consent. In practice, decision-making is heavily weighted toward intervening to prevent death, often with less consideration of the realities of long-term disability. We analyze long-term disability in pediatric neurosurgical disease from the perspectives of patients, families, and society. We then present a pragmatic framework and conversational approach for addressing informed consent discussions when the outcome is expected to be death or disability. We performed a focused review of literature regarding informed consent in pediatric neurosurgery by searching PubMed and Google Scholar with search terms including "pediatric neurosurgery," "informed consent," and "disability." The literature was focused on patients with diagnoses including spina bifida, neuro-oncology, trauma, and hydrocephalus. Patient perspective elements were physical/mental disability, lack of autonomy, and role in community/society. The family perspective involves caregiver burden, emotional toll, and financial impact. Societal considerations include the availability of public resources for disabled children, large-scale financial cost, and impacts on global health. Practical conversational steps with patients/caregivers include opening the discussion, information provision and acknowledgement of uncertainty, assessment of understanding and clarifying questions, decision-making, and decision maintenance, all while remaining sensitive to the emotional burden commensurate with these decisions. The "death or disability" paradigm represents a common challenge to informed consent in pediatric neurosurgery. Patient, family, and societal factors that inform surrogate decisions vary and sometimes conflict. Pediatric neurosurgeons must use a comprehensive approach to address the informational and relational needs of caregivers during the informed consent process.
Asunto(s)
Neurocirugia , Humanos , Niño , Consentimiento InformadoRESUMEN
OBJECTIVE: To describe and conceptualize high-quality care for long-stay pediatric intensive care unit (PICU) patients using group concept mapping (GCM). STUDY DESIGN: We convened an expert panel to elucidate domains of high-quality care for this growing patient population for which transitory care models fail to meet their needs. Thirty-one healthcare professionals and 7 parents of patients with previous prolonged PICU hospitalizations comprised a diverse, interprofessional multidisciplinary panel. Participants completed the prompt "For PICU patients and families experiencing prolonged lengths of stay, high quality care from the medical team includes ______", with unlimited free text responses. Responses were synthesized into individual statements, then panelists sorted them by idea similarity and rated them by perceived importance. Statement analysis using GCM software through GroupWisdom generated nonoverlapping clusters representing domains of high-quality care. RESULTS: Participants submitted 265 prompt responses representing 313 unique ideas, resulting in 78 final statements for sorting and rating. The resultant cluster map best representing the data contained 8 domains: (1) Family-Centered Care and Shared Decision Making, (2) Humanizing the Patient, (3) Clinician Supports and Resources, (4) Multidisciplinary Coordination of Care, (5) Family Well-Being, (6) Anticipatory Guidance and Care Planning, (7) Communication, and (8) Continuity of Care. CONCLUSIONS: GCM empowered a panel of healthcare professionals and parents to explicitly describe and conceptualize high-quality care for patients and families experiencing prolonged PICU stays. This information will aid the effort to address shortcomings of transitory PICU care models.
Asunto(s)
Comunicación , Unidades de Cuidado Intensivo Pediátrico , Humanos , Niño , Padres , Calidad de la Atención de Salud , Personal de SaludRESUMEN
OBJECTIVES: To develop consensus statements on continuity strategies using primary intensivists, primary nurses, and recurring multidisciplinary team meetings for long-stay patients (LSPs) in PICUs. PARTICIPANTS: The multidisciplinary Lucile Packard Foundation PICU Continuity Panel comprising parents of children who had prolonged PICU stays and experts in several specialties/professions that care for children with medical complexity in and out of PICUs. DESIGN/METHODS: We used modified RAND Delphi methodology, with a comprehensive literature review, Delphi surveys, and a conference, to reach consensus. The literature review resulted in a synthesized bibliography, which was provided to panelists. We used an iterative process to generate draft statements following panelists' completion of four online surveys with open-ended questions on implementing and sustaining continuity strategies. Panelists were anonymous when they voted on revised draft statements. Agreement of 80% constituted consensus. At a 3-day virtual conference, we discussed, revised, and re-voted on statements not reaching or barely reaching consensus. We used Grading of Recommendations Assessment, Development, and Evaluation to assess the quality of the evidence and rate the statements' strength. The Panel also generated outcome, process, and balancing metrics to evaluate continuity strategies. RESULTS: The Panel endorsed 17 consensus statements in five focus areas of continuity strategies (Eligibility Criteria, Initiation, Standard Responsibilities, Resources Needed to Implement, Resources Needed to Sustain). The quality of evidence of the statements was low to very low, highlighting the limited evidence and the importance of panelists' experiences/expertise. The strength of the statements was conditional. An extensive list of potential evaluation metrics was generated. CONCLUSIONS: These expert/parent-developed consensus statements provide PICUs with novel summaries on how to operationalize, implement, and sustain continuity strategies for LSP, a rapidly growing, vulnerable, resource-intensive population in PICUs.
Asunto(s)
Benchmarking , Cognición , Niño , Humanos , Consenso , Padres , Unidades de Cuidado Intensivo PediátricoRESUMEN
The etiology and outcomes of posterior reversible encephalopathy syndrome (PRES) in children with cancer are not well understood. We aim to determine the incidence of PRES, describe associated morbidity and mortality, and better understand risk factors in this patient population. A total of 473 children with a hematologic malignancy or postallogeneic hematopoietic cell transplantation between June 2015 and June 2020 were screened for PRES to determine incidence and whether age or underlying diagnosis are associated with development of PRES. We conducted a case-control study to evaluate whether comorbidities or chemotherapeutic agents are associated with PRES. Children with PRES were matched with 2 controls based on age and underlying diagnosis to identify additional risk factors. Fourteen patients developed PRES, with an incidence of 5.9/1000 people/year. Those diagnosed with PRES had commonly described PRES symptoms: hypertension, seizures, nausea/vomiting, altered mental status, and headaches. All patients received an magnetic resonance imaging, and most had findings consistent with PRES. Hematopoietic cell transplantation was associated with the development of PRES. The use of Etoposide was associated with PRES but comorbidities, steroids and calcineurin inhibitors were not. While PRES was infrequent in this population, it is associated with high morbidity and mortality, with ICU admissions and an overall hospital mortality, because of secondary causes, of 29%.
Asunto(s)
Neoplasias , Síndrome de Leucoencefalopatía Posterior , Inhibidores de la Calcineurina/efectos adversos , Estudios de Casos y Controles , Niño , Humanos , Incidencia , Neoplasias/complicaciones , Neoplasias/epidemiología , Neoplasias/terapia , Síndrome de Leucoencefalopatía Posterior/diagnóstico , Síndrome de Leucoencefalopatía Posterior/epidemiología , Síndrome de Leucoencefalopatía Posterior/etiologíaRESUMEN
Adolescents and young adults living with intellectual disability (ID) have made significant advancements integrating into multiple aspects of western society, but there has been less progress with regards to sexual health. While advocating for individuals with ID to live life to the fullest, pediatricians have practical concerns regarding the ability to consent to sex as well as avoid coercion and manipulation in sexual encounters. This has led to tension between supporting the autonomy of a patient with ID while protecting them from harm. We present a case of a young adult with moderate ID who is engaging in a sexual relationship with her boyfriend without parental knowledge. The pediatrician must decide the most appropriate course of action to support the patient's autonomy but also ensure that the patient is a willing participant and understands the risks of engaging in sexual activity. This case highlights 4 main themes: (1) practical concerns when approaching sexual health in the adolescent with ID, (2) advocating for the rights of those with ID to live life to the fullest, (3) the critical inclusion of individuals with ID in decisions directly affecting them and their peer group, and (4) decision-making capacity and respect for autonomy in individuals with ID. This case highlights the delicate balance providers face when providing care to adolescents and young adults with ID: supporting autonomy to make decisions while reducing harm to a vulnerable population.
Asunto(s)
Discapacidad Intelectual , Pediatras , Autonomía Personal , Conducta Sexual , Adolescente , Abuso Sexual Infantil , Anticoncepción , Toma de Decisiones , Femenino , Humanos , Relaciones Interpersonales , Tutores Legales/legislación & jurisprudencia , Participación del Paciente , Derechos del Paciente , Comunicación Persuasiva , Riesgo , Salud Sexual , SexualidadRESUMEN
PURPOSE: We assessed opinions of females with congenital adrenal hyperplasia and their parents about the parent's ability to choose early genital surgery for these patients. MATERIALS AND METHODS: We conducted an online survey of females with congenital adrenal hyperplasia (46XX,16+ years old) and independently recruited parents (2019-2020) diagnosed in first year of life in the United States. A multidisciplinary medical team, women with congenital adrenal hyperplasia and parents drafted the survey. Fisher exact test was used. RESULTS: Of 57 females with congenital adrenal hyperplasia (median age 39 years), 93.0% underwent genital surgery (median 1-2 years old). Most females (79.0%) believed legislation prohibiting surgery in childhood would cause harm. Most (64.9%) believed a ban "would have been harmful to me" (24.6% not harmful, 10.5% neutral). Most females (70.2%) believed a ban undermined parental rights to make medical decisions in their child's best interest. While 75.4% did not believe a ban was in the best interest of females with congenital adrenal hyperplasia, 14.0% did (10.5% neutral). For 132 parents of females with congenital adrenal hyperplasia (parent/child median age 40/11 years), 78.8% of children underwent surgery (median <1 year old). Most parents (93.9%) believed legislation prohibiting surgery in childhood would cause harm. Most (77.3%) believed a ban "would have harmed my daughter" (12.1% no harm, 5.3% neutral, 5.3% no answer). Parents were more likely than females with congenital adrenal hyperplasia to oppose a ban (p ≤0.02). Most parents (90.9%) believed a ban undermined parental rights. While 93.9% did not believe a ban was in the best interest of females with congenital adrenal hyperplasia, 3.8% did (2.3% neutral). CONCLUSIONS: The majority of females with congenital adrenal hyperplasia and their parents support the parents' ability to decide about potential genital surgery, opposing moratoria on surgery in childhood.
Asunto(s)
Hiperplasia Suprarrenal Congénita/cirugía , Actitud Frente a la Salud , Conducta de Elección , Intervención Médica Temprana , Padres/psicología , Pacientes/psicología , Adolescente , Adulto , Niño , Femenino , Humanos , Masculino , Persona de Mediana Edad , Autoinforme , Procedimientos Quirúrgicos UrogenitalesRESUMEN
The primary objective was to review pediatric ethics consultations (PECs) at a large academic health center over a nine year period, assessing demographics, ethical issues, and consultant intervention. The secondary objective was to describe the evolution of PECs at our institution. This was a retrospective review of Consultation Summary Sheets compiled for PECs at our Academic Health Center between January 2008 and April 2017. There were 165 PECs reviewed during the study period. Most consult requests came from the inpatient setting, with the Pediatric and Neonatal Intensive Care Units being the highest utilizers. Consultation utilization increased over the study period. The most common patient age was less than one year. Physicians were most likely to request consultation. Patient Best Interest, Withholding/Withdrawing of Life Sustaining Therapy, and Provider Moral Distress were ethical issues most commonly identified by the consultants. Making recommendations was the most common consultant intervention. The ethics consultation process evolved over time from informal provider discussions, to a hospital infant care review committee, to a pediatric only consultation service, to a combined adult/pediatric consultation service, with variable levels of salary support for consultants. Ethics consultation requests are growing at our institution. Similarities in identified ethical issues exist between our findings and existing literature, however meaningful comparisons remains elusive secondary to variability in approaches to investigation and reporting. A combined paid/volunteer/trainee ethics consultation service model appears sustainable and real time ethics consultation is feasible using this approach.
Asunto(s)
Consultoría Ética/normas , Pediatría/ética , Centros Médicos Académicos/organización & administración , Centros Médicos Académicos/estadística & datos numéricos , Adolescente , Niño , Preescolar , Toma de Decisiones/ética , Consultoría Ética/estadística & datos numéricos , Femenino , Humanos , Lactante , Masculino , Pediatría/métodos , Pediatría/estadística & datos numéricos , Estudios RetrospectivosRESUMEN
Thiamine plays a critical role in energy metabolism. Critically ill children and adults may develop thiamine deficiency with ultimately increased mortality due to potentially irreversible consequences of severe type B lactic acidosis. We report a case of an unvaccinated term neonate with malignant pertussis requiring extracorporeal membrane oxygenation and continuous renal replacement therapy, who developed profound lactic acidosis of unknown etiology. After countless evaluations for likely causes, the patient was ultimately determined to have thiamine deficiency and her acidosis resolved rapidly with vitamin supplementation.
RESUMEN
OBJECTIVES: To evaluate whether a pediatric intensive care unit initiative promoting physical contact between caregiver and patient improves caregiver spiritual wellbeing. The secondary objectives were to evaluate caregiver perceptions of care before and after the initiative and to follow unplanned extubation rate as a marker of safety of the initiative. We hypothesized that caregiver spiritual wellbeing and caregiver perceptions of care would improve with implementation of our physical contact initiative known as Project ROSE (Reach Out, Soothe, and Embrace). STUDY DESIGN: Project ROSE was a practice change initiative promoting physical contact between caregiver and hospitalized child in an academic quaternary care pediatric intensive care unit. Caregivers' spiritual wellbeing and perceptions of care were surveyed at days 1 and 4, then compared pre- and postimplementation of the unit-wide initiative. Wilcoxon rank sum tests compared groups (pre- and post-Project ROSE). A total of 331 caregivers returned surveys. RESULTS: We analyzed 331 surveys (pre, n = 174/post, n = 157). Caregiver spiritual wellbeing at enrollment (day 1) was no different between groups (P = .47). Caregiver spiritual wellbeing on day 4 was greater in the postintervention group (pre 40.0 [32.0, 44.0] vs post 42.0 [37.5, 45.0] P = .03). Caregiver perceptions of care improved postintervention. There was no change in the unplanned extubation rate between groups. CONCLUSION: Project ROSE improved caregiver spiritual wellbeing and perceptions of care, was implemented safely, addresses a need in family-centered care of critically ill pediatric patients, and merits consideration for integration into practice.
Asunto(s)
Cuidadores/psicología , Cuidados Críticos/métodos , Enfermedad Crítica/terapia , Salud Mental , Relaciones Padres-Hijo , Espiritualidad , Tacto , Adolescente , Adulto , Actitud Frente a la Salud , Niño , Preescolar , Cuidados Críticos/psicología , Enfermedad Crítica/psicología , Femenino , Encuestas de Atención de la Salud , Humanos , Lactante , Recién Nacido , Unidades de Cuidado Intensivo Pediátrico , Masculino , Persona de Mediana Edad , Padres/psicología , Estudios ProspectivosRESUMEN
Futility disputes in the intensive care unit setting have received significant attention in the literature over the past several years. Although the idea of improving communication in an attempt to resolve these challenging situations has been regularly discussed, the concept and role of trust building as the means by which communication improves and disputes are best navigated is largely absent. We take this opportunity to review the current literature on futility disputes and argue the important role of broken trust in these encounters, highlighting current evidence establishing the necessity and utility of trust in both medical decision-making and effective communication. Finally, we propose a futility dispute navigation model built upon improved communication through trust building.
Asunto(s)
Cuidados Críticos/psicología , Disentimientos y Disputas , Inutilidad Médica , Confianza , Toma de Decisiones Clínicas , Comunicación , Humanos , Unidades de Cuidados IntensivosRESUMEN
This paper describes a practice innovation: the addition of formal weekly discussions of patients with prolonged PICU stay to reduce healthcare providers' moral distress and decrease length of stay for patients with life-threatening illnesses. We evaluated the innovation using a pre/post intervention design measuring provider moral distress and comparing patient outcomes using retrospective historical controls. Physicians and nurses on staff in our pediatric intensive care unit in a quaternary care children's hospital participated in the evaluation. There were 60 patients in the interventional group and 66 patients in the historical control group. We evaluated the impact of weekly meetings (PEACE rounds) to establish goals of care for patients with longer than 10 days length of stay in the ICU for a year. Moral distress was measured intermittently and reported moral distress thermometer (MDT) scores fluctuated. "Clinical situations" represented the most frequent contributing factor to moral distress. Post intervention, overall moral distress scores, measured on the moral distress scale revised (MDS-R), were lower for respondents in all categories (non-significant), and on three specific items (significant). Patient outcomes before and after PEACE intervention showed a statistically significant decrease in PRISM indexed LOS (4.94 control vs 3.37 PEACE, p = 0.015), a statistically significant increase in both code status changes DNR (11 % control, 28 % PEACE, p = 0.013), and in-hospital death (9 % control, 25 % PEACE, p = 0.015), with no change in patient 30 or 365 day mortality. The addition of a clinical ethicist and senior intensivist to weekly inter-professional team meetings facilitated difficult conversations regarding realistic goals of care. The study demonstrated that the PEACE intervention had a positive impact on some factors that contribute to moral distress and can shorten PICU length of stay for some patients.