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1.
Pediatr Transplant ; 28(2): e14695, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38433565

RESUMO

BACKGROUND: Disparities in pediatric heart transplant outcomes based on socioeconomic status (SES) have been previously observed. However, there is a need to reevaluate these associations in contemporary settings with advancements in transplant therapies and increased awareness of health disparities. This retrospective study aims to investigate the relationship between SES and outcomes for pediatric heart transplant patients. METHODS: Data were collected through a chart review of 176 pediatric patients who underwent first orthotopic heart transplantation (OHT) at a single center from 2013 to 2021. The Area Deprivation Index (ADI), a composite score based on U.S. census data, was used to quantify SES. Cox proportional hazards models and generalized linear models were employed to analyze the association between SES and graft failure, rejection rates, and hospitalization rates. RESULTS: The analysis revealed no statistically significant differences in graft failure rates, rejection rates, or hospitalization rates between low-SES and high-SES pediatric heart transplant patients for our single-center study. CONCLUSION: There may be patient education, policies, and social resources that can help mitigate SES-based healthcare disparities. Additional multi-center research is needed to identify post-transplant care that promotes patient equity.


Assuntos
Transplante de Coração , Humanos , Criança , Estudos Retrospectivos , Classe Social , Disparidades em Assistência à Saúde , Hospitalização
2.
Pediatr Crit Care Med ; 25(10): 899-911, 2024 Oct 01.
Artigo em Inglês | MEDLINE | ID: mdl-39023327

RESUMO

OBJECTIVE: Pediatric deaths often occur within hospitals and involve balancing aggressive treatment with minimization of suffering. This study first investigated associations between clinical/demographic features and the level of intensity of various therapies these patients undergo at the end of life (EOL). Second, the work used these data to develop a new, broader spectrum for classifying pediatric EOL trajectories. DESIGN: Retrospective, single-center study, 2013-2021. SETTING: Four hundred sixty-one bed tertiary, stand-alone children's hospital with 112 ICU beds. PATIENTS: Patients of age 0-26 years old at the time of death. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of 1111 included patients, 85.7% died in-hospital. Patients who died outside the hospital were older. Among the 952 in-hospital deaths, most occurred in ICUs (89.5%). Clustering analysis was used to distinguish EOL trajectories based on the presence of intensive therapies and/or an active resuscitation attempt at the EOL. We identified five simplified categories: 1) death during active resuscitation, 2) controlled withdrawal of life-sustaining technology, 3) natural progression to death despite maximal therapy, 4) discontinuation of nonsustaining therapies, and 5) withholding/noninitiation of future therapies. Patients with recent surgical procedures, a history of organ transplantation, or admission to the Cardiovascular ICU had more intense therapies at EOL than those who received palliative care consultations, had known genetic conditions, or were of older age. CONCLUSIONS: In this retrospective study of pediatric EOL trajectories based on the intensity of technology and/or resuscitation discontinued at the EOL, we have identified associations between these trajectories and patient characteristics. Further research is needed to investigate the impact of these trajectories on families, patients, and healthcare providers.


Assuntos
Mortalidade Hospitalar , Unidades de Terapia Intensiva Pediátrica , Assistência Terminal , Humanos , Estudos Retrospectivos , Lactente , Assistência Terminal/métodos , Assistência Terminal/estatística & dados numéricos , Pré-Escolar , Masculino , Feminino , Criança , Adolescente , Recém-Nascido , Análise por Conglomerados , Unidades de Terapia Intensiva Pediátrica/estatística & dados numéricos , Adulto Jovem , Adulto , Suspensão de Tratamento/estatística & dados numéricos , Cuidados Paliativos/estatística & dados numéricos
3.
J Cardiothorac Vasc Anesth ; 38(11): 2636-2642, 2024 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-39227189

RESUMO

OBJECTIVES: To determine if bolus administration of calcium increases pulmonary artery pressures after unifocalization procedures or pulmonary artery reconstruction surgery. DESIGN: Retrospective cohort study using Stanford University's data warehouse. SETTING: A large pediatric heart center within an academic quaternary care facility. PARTICIPANTS: All patients undergoing pulmonary artery reconstruction or unifocalization procedures identifiable in the data warehouse. INTERVENTIONS: Data were collected from Stanford University's data repository and formatted and analyzed using RStudio (v 2023.06.1+524). MEASUREMENTS AND MAIN RESULTS: The primary outcome was the change in pulmonary artery systolic pressure (PASP) after a bolus administration of calcium. Secondary endpoints include changes in pulmonary arterial-to-systemic arterial pressure ratio, mean arterial pressure, right-sided filling pressure, and left atrial pressure. The Friedman test was used to assess differences and the Durbin-Conover rank-sum for pairwise comparisons. A difference in PASP after a bolus dose of calcium was found (Friedman X2 = 13.67, p = 0.003), with a higher PASP 5 minutes after calcium administration compared with 2 minutes before administration (35 mmHg v 33 mmHg, p = 0.01), and a higher PASP 10 minutes after calcium administration compared with2 minutes before administration (35 mmHg v 33 mmHg, p = 0.008). CONCLUSIONS: Calcium bolus administration led to an increase in pulmonary arterial pressure in patients after pulmonary artery reconstruction or unifocalization surgeries. It may be prudent to avoid bolus administration in this patient population immediately after repair or in patients with right ventricular dysfunction.


Assuntos
Hemodinâmica , Artéria Pulmonar , Humanos , Artéria Pulmonar/efeitos dos fármacos , Projetos Piloto , Estudos Retrospectivos , Masculino , Feminino , Hemodinâmica/efeitos dos fármacos , Hemodinâmica/fisiologia , Lactente , Cálcio/administração & dosagem , Procedimentos de Cirurgia Plástica/métodos , Estudos de Coortes , Pré-Escolar , Criança
4.
Cardiol Young ; 34(1): 67-72, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37198962

RESUMO

Family-centered rounding has emerged as the gold standard for inpatient paediatrics rounds due to its association with improved family and staff satisfaction and reduction of harmful errors. Little is known about family-centered rounding in subspecialty paediatric settings, including paediatric acute care cardiology.In this qualitative, single centre study, we conducted semi-structured interviews with providers and caregivers eliciting their attitudes toward family-centered rounding. An a priori recruitment approach was used to optimise diversity in reflected opinions. A brief demographic survey was completed by participants. We completed thematic analysis of transcribed interviews using grounded theory.In total, 38 interviews representing the views of 48 individuals (11 providers, 37 caregivers) were completed. Three themes emerged: rounds as a moment of mutual accountability, caregivers' empathy for providers, and providers' objections to family-centered rounding. Providers' objections were further categorised into themes of assumptions about caregivers, caregiver choices during rounds, and risk for exacerbation of bias and inequity.Caregivers and providers in the paediatric acute care cardiology setting echoed some previously described attitudes toward family-centered rounding. Many of the challenges surrounding family-centered rounding might be addressed through access to training for caregivers and providers alike. Hospitals should invest in systems to facilitate family-centered rounding if they choose to implement this model of care as the current state risks erosion of provider-caregiver relationship.


Assuntos
Cuidadores , Cuidados Críticos , Humanos , Criança , Pesquisa Qualitativa , Inquéritos e Questionários
5.
Pediatr Crit Care Med ; 24(1): 41-50, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36398973

RESUMO

OBJECTIVES: Most pediatric patients on ventricular assist device (VAD) survive to transplantation. Approximately 15% will die on VAD support, and the circumstances at the end-of-life are not well understood. We, therefore, sought to characterize patient location and invasive interventions used at the time of death. DESIGN: Retrospective database study of a cohort meeting inclusion criteria. SETTING: Thirty-six centers participating in the Advanced Cardiac Therapies Improving Outcomes Network (ACTION) Registry. PATIENTS: Children who died on VAD therapy in the period March 2012 to September 2021. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Of the 117 of 721 patients (16%) who died on VAD, the median (interquartile range) age was 5 years (1-16 yr) at 43 days (17-91 d) postimplant. Initial goals of therapy were bridge to consideration for candidacy for transplantation in 60 of 117 (51%), bridge to transplantation in 44 of 117 (38%), bridge to recovery 11 of 117 (9%), or destination therapy (i.e., VAD as the endpoint) in two of 117 (2%). The most common cause of death was multiple organ failure in 35 of 117 (30%), followed by infection in 12 of 117 (10%). Eighty-five of 92 (92%) died with a functioning device in place. Most patients were receiving invasive interventions (mechanical ventilation, vasoactive infusions, etc.) at the end of life. Twelve patients (10%) died at home. CONCLUSIONS: One-in-six pediatric VAD patients die while receiving device support, with death occurring soon after implant and usually from noncardiac causes. Aggressive interventions are common at the end-of-life. The ACTION Registry data should inform future practices to promote informed patient/family and clinician decision-making to hopefully reduce suffering at the end-of-life.


Assuntos
Insuficiência Cardíaca , Transplante de Coração , Coração Auxiliar , Humanos , Criança , Pré-Escolar , Estudos de Coortes , Insuficiência Cardíaca/cirurgia , Insuficiência Cardíaca/etiologia , Estudos Retrospectivos , Coração Auxiliar/efeitos adversos , Morte , Resultado do Tratamento
6.
Ophthalmology ; 129(2): e14-e32, 2022 02.
Artigo em Inglês | MEDLINE | ID: mdl-34478784

RESUMO

IMPORTANCE: The development of artificial intelligence (AI) and other machine diagnostic systems, also known as software as a medical device, and its recent introduction into clinical practice requires a deeply rooted foundation in bioethics for consideration by regulatory agencies and other stakeholders around the globe. OBJECTIVES: To initiate a dialogue on the issues to consider when developing a bioethically sound foundation for AI in medicine, based on images of eye structures, for discussion with all stakeholders. EVIDENCE REVIEW: The scope of the issues and summaries of the discussions under consideration by the Foundational Principles of Ophthalmic Imaging and Algorithmic Interpretation Working Group, as first presented during the Collaborative Community on Ophthalmic Imaging inaugural meeting on September 7, 2020, and afterward in the working group. FINDINGS: Artificial intelligence has the potential to improve health care access and patient outcome fundamentally while decreasing disparities, lowering cost, and enhancing the care team. Nevertheless, substantial concerns exist. Bioethicists, AI algorithm experts, as well as the Food and Drug Administration and other regulatory agencies, industry, patient advocacy groups, clinicians and their professional societies, other provider groups, and payors (i.e., stakeholders) working together in collaborative communities to resolve the fundamental ethical issues of nonmaleficence, autonomy, and equity are essential to attain this potential. Resolution impacts all levels of the design, validation, and implementation of AI in medicine. Design, validation, and implementation of AI warrant meticulous attention. CONCLUSIONS AND RELEVANCE: The development of a bioethically sound foundation may be possible if it is based in the fundamental ethical principles of nonmaleficence, autonomy, and equity for considerations for the design, validation, and implementation for AI systems. Achieving such a foundation will be helpful for continuing successful introduction into medicine before consideration by regulatory agencies. Important improvements in accessibility and quality of health care, decrease in health disparities, and lower cost thereby can be achieved. These considerations should be discussed with all stakeholders and expanded on as a useful initiation of this dialogue.


Assuntos
Inteligência Artificial , Diagnóstico por Imagem , Oftalmopatias/diagnóstico por imagem , Imagem Óptica , Bioética , Humanos , Software , Pesquisa Translacional Biomédica
7.
Pediatr Crit Care Med ; 23(12): e601-e606, 2022 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-36194025

RESUMO

OBJECTIVES: Ventricular assist devices (VADs) are increasingly used in pediatric heart failure as bridges to heart transplantation, although 25% will die with VADs. Family experiences in this population are not well-described. The objective is to understand bereaved families' perspectives on VAD and end-of-life decision-making. DESIGN: Semistructured interviews with bereaved caregivers of pediatric VAD patients. SETTING: Tertiary children's hospital. PATIENTS: Families of six pediatric VAD patients who died from 2014 to 2020. INTERVENTIONS: Not available. MEASUREMENTS AND MAIN RESULTS: Applying a grounded theory framework, interviews were coded by two independent readers using qualitative software. Themes were discussed in iterative multidisciplinary meetings. Participants were interviewed at a median 2.4 years after their child died. Three major themes emerged: 1) "lack of regret" for VAD implantation despite the outcome; 2) "caregiver-child accord" (via patient's verbal assent or physical cues) at implantation and end-of-life was important in family decision-making; and 3) development of a "local surrogate family" (medical team and peer families) provided powerful support. CONCLUSIONS: Bereaved families' perspectives provide insight into quality decision-making for major interventions and end-of-life care in pediatric patients with chronic illness who face decisions regarding technology dependence.


Assuntos
Insuficiência Cardíaca , Coração Auxiliar , Assistência Terminal , Criança , Humanos , Cuidadores , Insuficiência Cardíaca/cirurgia , Morte
8.
Pediatr Crit Care Med ; 22(8): e419-e426, 2021 08 01.
Artigo em Inglês | MEDLINE | ID: mdl-33591072

RESUMO

OBJECTIVES: Through improving diagnostics and prognostics genomic sequencing promises to significantly impact clinical decisions for children with critical cardiac disease. Little is known about how families of children with critical cardiac disease perceive the impact of genomic sequencing on clinical care choices. DESIGN: Qualitative interview study. SETTING: A high-volume, tertiary pediatric heart center. SUBJECTS: Families of children with critical cardiac disease. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Thematic analysis of interview response content. Thirty-five families were interviewed. Three themes emerged: 1) benefits versus challenges of having genomic sequencing results, and 2) fears of clinical applications of genomic sequencing, and 3) nonclinical fears related to genomic sequencing. Participants struggled with perceived uses of genomic sequencing-derived knowledge. They described comfort in foreknowledge of their child's likely disease course but articulated significant apprehension around participating in care decisions with limited knowledge of genomic sequencing, genomic sequencing uses to inform clinical resource rationing decisions, and genomic sequencing uses by third parties impacting financial pressures families experience caring for a child with critical cardiac disease. CONCLUSIONS: Families' perceptions of genomic sequencing uses in critical cardiac disease appear to strain their overall trust in the health system. Erosion of trust is concerning because the potential of genomic sequencing in critical cardiac disease will be unrealized if families are unwilling to undergo genomic sequencing, let alone to participate in the ongoing research needed to link genomic sequencing variants to clinical outcomes. Our findings may have implications for genomic sequencing use in children with other critical, high-acuity diseases.


Assuntos
Família , Cardiopatias , Atitude , Criança , Genômica , Cardiopatias/diagnóstico , Cardiopatias/genética , Humanos , Pais , Pesquisa Qualitativa
9.
Am J Bioeth ; 20(11): 7-17, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-33103967

RESUMO

Along with potential benefits to healthcare delivery, machine learning healthcare applications (ML-HCAs) raise a number of ethical concerns. Ethical evaluations of ML-HCAs will need to structure the overall problem of evaluating these technologies, especially for a diverse group of stakeholders. This paper outlines a systematic approach to identifying ML-HCA ethical concerns, starting with a conceptual model of the pipeline of the conception, development, implementation of ML-HCAs, and the parallel pipeline of evaluation and oversight tasks at each stage. Over this model, we layer key questions that raise value-based issues, along with ethical considerations identified in large part by a literature review, but also identifying some ethical considerations that have yet to receive attention. This pipeline model framework will be useful for systematic ethical appraisals of ML-HCA from development through implementation, and for interdisciplinary collaboration of diverse stakeholders that will be required to understand and subsequently manage the ethical implications of ML-HCAs.


Assuntos
Aprendizado de Máquina , Princípios Morais , Atenção à Saúde , Humanos
10.
J Genet Couns ; 29(1): 78-87, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31701594

RESUMO

Genomic sequencing (GS), such as whole genome and exome sequencing, is rapidly being integrated into pediatric critical care settings. Results are being used to make high impact decisions including declarations of futility, withdrawal of care, and rationing of scarce resources. In this qualitative study, we conducted interviews with clinicians involved in the care of critically ill children with congenital heart disease (CHD) to investigate their views on implementation of GS into clinical practice. Interviews were transcribed and inductively analyzed for major themes using grounded theory and thematic analysis. Three major themes emerged surrounding the use of genomic information in the high-stakes, time pressured decision making that characterizes clinical care of critically ill children with CHD: (a) that clinicians felt they did not have sufficient training to accurately assess genetic results despite pressure to incorporate results into clinical decisions; (b), that they desire knowledge support from genetic specialists, such as genetic counselors, who both understand the critical care context and are available within the time constraints of critical care clinical pressures; and (c), that clinicians feel a pressing need for increased genetics education to be able to safely and appropriately incorporate GS results into clinical decisions Our data suggest that genetics specialists may need a stronger presence in the pediatric critical care setting.


Assuntos
Conselheiros , Cuidados Críticos , Aconselhamento Genético , Testes Genéticos , Pediatria , Criança , Feminino , Teoria Fundamentada , Humanos , Masculino , Pesquisa Qualitativa , Sequenciamento do Exoma
12.
Pediatr Transplant ; 23(4): e13402, 2019 06.
Artigo em Inglês | MEDLINE | ID: mdl-31012250

RESUMO

There is a limited supply of organs for all those who need them for survival. Thus, careful decisions must be made about who is listed for transplant. Studies show that manifesting genetic disease can impact listing eligibility. What has not yet been studied is the impact genetic risks for future disease have on a patient's chance to be listed. Surveys were emailed to 163 pediatric liver, heart, and kidney transplant programs across the United States to elicit views and experiences of key clinicians regarding each program's use of genetic risks (ie, predispositions, positive predictive testing) in listing decisions. Response rate was 42%. Sixty-four percent of programs have required genetic testing for specific indications prior to listing decisions. Sixteen percent have required it without specific indications, suggesting that genetic testing may be used to screen candidates. Six percent have chosen not to list patients with secondary findings or family histories of genetic conditions. In hypothetical scenarios, programs consider cancer predispositions and adult-onset neurological conditions to be relative contraindications to listing (61%, 17%, and 8% depending on scenario), and some consider them absolute contraindications (5% and 3% depending on scenario). Only 3% of programs have formal policies for these scenarios, but all consult genetic specialists at least "sometimes" for results interpretation. Our study reveals that pediatric transplant programs are using future onset genetic risks in listing decisions. As genetic testing is increasingly adopted into pediatric medicine, further study is needed to prevent possible inappropriate use of genetic information from impacting listing eligibility.


Assuntos
Transplante de Órgãos/métodos , Transplante de Órgãos/normas , Seleção de Pacientes , Obtenção de Tecidos e Órgãos/métodos , Obtenção de Tecidos e Órgãos/normas , Listas de Espera , Adulto , Neoplasias da Mama/genética , Criança , Tomada de Decisões , Progressão da Doença , Exoma , Saúde da Família , Feminino , Genes BRCA1 , Genes p53 , Predisposição Genética para Doença , Testes Genéticos , Variação Genética , Transplante de Coração/métodos , Transplante de Coração/normas , Humanos , Doença de Huntington/genética , Internet , Transplante de Rim/métodos , Transplante de Rim/normas , Transplante de Fígado/métodos , Transplante de Fígado/normas , Masculino , Neoplasias Ovarianas/genética , Pediatria , Fatores de Risco , Inquéritos e Questionários , Estados Unidos , Sequenciamento Completo do Genoma
16.
JAMA ; 331(1): 17-18, 2024 01 02.
Artigo em Inglês | MEDLINE | ID: mdl-38032634

RESUMO

This Viewpoint discusses a recent executive order by US President Joe Biden about the development and implementation of AI, including the role of government vs the private sector and how the order may affect health care.


Assuntos
Inteligência Artificial , Atenção à Saúde , Atenção à Saúde/legislação & jurisprudência , Prática de Grupo/legislação & jurisprudência , Organizações/legislação & jurisprudência , Política , Governo Federal , Estados Unidos
17.
Genet Med ; 20(11): 1455-1461, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-29493583

RESUMO

PURPOSE: To investigate the potential impacts of whole-genome sequencing (WGS) in the pediatric critical-care context, we examined how clinicians caring for critically ill children with congenital heart disease (CHD) anticipate and perceive the impact of WGS on their decision-making process and treatment recommendations. METHODS: We conducted semistructured in-person and telephone interviews of clinicians involved in the care of critically ill children with CHD at a high-volume pediatric heart center. We qualitatively analyzed the transcribed interviews. RESULTS: In total, 34 clinicians were interviewed. Three themes emerged: (i) uncertainty about the accuracy of WGS testing and adequacy of testing validation; (ii) the use of WGS to facilitate life-limiting decisions such as futility, rationing, and selective prenatal termination; and (iii) moral distress over using WGS with a lack of decision support. CONCLUSION: Despite uncertainty about WGS testing, the interviewed clinicians were using, and anticipated expanding the use of, WGS results to justify declarations of futility, withdrawal of care, and rationing in critically ill children with CHD. This situation is causing moral distress in providers who have to make high-stakes decisions involving WGS results, with only partial understanding of them. Decision support for clinicians, and discussion with families of the risks of using WGS for rationing or withdrawal, is needed.


Assuntos
Estado Terminal/terapia , Testes Genéticos , Genoma Humano/genética , Cardiopatias/genética , Criança , Cuidados Críticos/tendências , Tomada de Decisões , Feminino , Cardiopatias/diagnóstico , Cardiopatias/patologia , Cardiopatias/terapia , Humanos , Pediatria , Análise de Sequência de DNA , Sequenciamento do Exoma/métodos
18.
Anesth Analg ; 136(6): e29-e30, 2023 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-37205812
19.
Am J Bioeth ; 23(6): 54-56, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37220366
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