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2.
JAMA Netw Open ; 6(9): e2330774, 2023 09 05.
Artigo em Inglês | MEDLINE | ID: mdl-37682574

RESUMO

Importance: An increasing number of children survive after acute respiratory distress syndrome (ARDS). The long-term morbidity affecting these survivors, including the burden of hospital readmission and key factors associated with readmission, is unknown. Objective: To determine 1-year readmission rates among survivors of pediatric ARDS and to investigate the associations of 3 key index hospitalization factors (presence or development of a complex chronic condition, receipt of a tracheostomy, and hospital length of stay [LOS]) with readmission. Design, Setting, and Participants: This retrospective cohort study used data from the commercial or Medicaid IBM MarketScan databases between 2013 and 2017, with follow-up data through 2018. Participants included hospitalized children (aged ≥28 days to <18 years) who received mechanical ventilation and had algorithm-identified ARDS. Data analysis was completed from March 2022 to March 2023. Exposures: Complex chronic conditions (none, nonrespiratory, and respiratory), receipt of tracheostomy, and index hospital LOS. Main Outcomes and Measures: The primary outcome was 1-year, all-cause hospital readmission. Univariable and multivariable Cox proportional hazard models were created to test the association of key hospitalization factors with readmission. Results: One-year readmission occurred in 3748 of 13 505 children (median [IQR] age, 4 [0-14] years; 7869 boys [58.3%]) with mechanically ventilated ARDS who survived to hospital discharge. In survival analysis, the probability of 1-year readmission was 30.0% (95% CI, 29.0%-30.8%). One-half of readmissions occurred within 61 days of discharge (95% CI, 56-67 days). Both respiratory (adjusted hazard ratio [aHR], 2.69; 95% CI, 2.42-2.98) and nonrespiratory (aHR, 1.86; 95% CI, 1.71-2.03) complex chronic conditions were associated with 1-year readmission. Placement of a new tracheostomy (aHR, 1.98; 95% CI, 1.69-2.33) and LOS 14 days or longer (aHR, 1.87; 95% CI, 1.62-2.16) were associated with readmission. After exclusion of children with chronic conditions, LOS 14 days or longer continued to be associated with readmission (aHR, 1.92; 95% CI, 1.49-2.47). Conclusions and Relevance: In this retrospective cohort study of children with ARDS who survived to discharge, important factors associated with readmission included the presence or development of chronic medical conditions during the index admission, tracheostomy placement during index admission, and index hospitalization of 14 days or longer. Future studies should evaluate whether postdischarge interventions (eg, telephonic contact, follow-up clinics, and home health care) may help reduce the readmission burden.


Assuntos
Alta do Paciente , Readmissão do Paciente , Masculino , Estados Unidos/epidemiologia , Humanos , Criança , Recém-Nascido , Lactente , Pré-Escolar , Adolescente , Assistência ao Convalescente , Estudos Retrospectivos , Hospitalização
3.
Pediatr Crit Care Med ; 24(1): e28-e43, 2023 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-36066595

RESUMO

OBJECTIVE: Admission to the PICU may result in substantial short- and long-term morbidity for survivors and their families. Engaging caregivers in discussion of prognosis is challenging for PICU clinicians. We sought to summarize the literature on prognostic, goals-of-care conversations (PGOCCs) in the PICU in order to establish current evidence-based practice, highlight knowledge gaps, and identify future directions. DATA SOURCES: PubMed (MEDLINE and PubMed Central), EMBASE, CINAHL, PsycINFO, and Scopus. STUDY SELECTION: We reviewed published articles (2001-2022) that examined six themes within PGOCC contextualized to the PICU: 1) caregiver perspectives, 2) clinician perspectives, 3) documentation patterns, 4) communication skills training for clinicians, 5) family conferences, and 6) prospective interventions to improve caregiver-clinician communication. DATA EXTRACTION: Two reviewers independently assessed eligibility using Preferred Reporting Items for Systematic Reviews and Meta-Analysis methodology. DATA SYNTHESIS: Of 1,420 publications screened, 65 met criteria for inclusion with several key themes identified. Parent and clinician perspectives highlighted the need for clear, timely, and empathetic prognostic communication. Communication skills training programs are evaluated by a participant's self-perceived improvement. Caregiver and clinician views on quality of family meetings may be discordant. Documentation of PGOCCs is inconsistent and most likely to occur shortly before death. Only two prospective interventions to improve caregiver-clinician communication in the PICU have been reported. The currently available studies reflect an overrepresentation of bereaved White, English-speaking caregivers of children with known chronic conditions. CONCLUSIONS: Future research should identify evidence-based communication practices that enhance caregiver-clinician PGOCC in the PICU and address: 1) caregiver and clinician perspectives of underserved and limited English proficiency populations, 2) inclusion of caregivers who are not physically present at the bedside, 3) standardized communication training programs with broader multidisciplinary staff inclusion, 4) improved design of patient and caregiver educational materials, 5) the development of pediatric decision aids, and 6) inclusion of long-term post-PICU outcomes as a measure for PGOCC interventions.


Assuntos
Comunicação , Objetivos , Humanos , Criança , Estudos Prospectivos , Prognóstico , Unidades de Terapia Intensiva Pediátrica
4.
PEC Innov ; 1: 100029, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37213739

RESUMO

•Goals of Care resources are primarily in written format and for adult patients.•Video tools can support families of pediatric patients facing prognostic uncertainty.•Videos represent an effective but underutilized Goals of Care communication tool.

6.
PLoS One ; 13(11): e0208324, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-30500859

RESUMO

The etiology of intellectual disability (ID) is heterogeneous including a variety of genetic and environmental causes. Historically, most research has not focused on autosomal recessive ID (ARID), which is a significant cause of ID, particularly in areas where parental consanguinity is common. Identification of genetic causes allows for precision diagnosis and improved genetic counseling. We performed whole exome sequencing to 21 Turkish families, seven multiplex and 14 simplex, with nonsyndromic ID. Based on the presence of multiple affected siblings born to unaffected parents and/or shared ancestry, we consider all families as ARID. We revealed the underlying causative variants in seven families in MCPH1 (c.427dupA, p.T143Nfs*5), WDR62 (c.3406C>T, p.R1136*), ASPM (c.5219_5225delGAGGATA, p.R1740Tfs*7), RARS (c.1588A>G, p.T530A), CC2D1A (c.811delG, p.A271Pfs*30), TUSC3 (c.793C>T, p.Q265*) and ZNF335 (c.808C>T, p.R270C and c.3715C>A, p.Q1239K) previously linked with ARID. Besides ARID genes, in one family, affected male siblings were hemizygous for PQBP1 (c.459_462delAGAG, p.R153Sfs*41) and in one family the proband was female and heterozygous for X-chromosomal SLC9A6 (c.1631+1G>A) variant. Each of these variants, except for those in MCPH1 and PQBP1, have not been previously published. Additionally in one family, two affected children were homozygous for the c.377G>A (p.W126*) variant in the FAM183A, a gene not previously associated with ARID. No causative variants were found in the remaining 11 families. A wide variety of variants explain half of families with ARID. FAM183A is a promising novel candidate gene for ARID.


Assuntos
Códon sem Sentido , Deficiência Intelectual/genética , Proteínas de Membrana/genética , Criança , Pré-Escolar , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Linhagem , Mutação Puntual
7.
Glob Chang Biol ; 19(5): 1347-57, 2013 May.
Artigo em Inglês | MEDLINE | ID: mdl-23504715

RESUMO

Soils of grasslands represent a large potential reservoir for storing CO2 , but this potential likely depends on how grasslands are managed for large mammal grazing. Previous studies found both strong positive and negative grazing effects on soil organic carbon (SOC) but explanations for this variation are poorly developed. Expanding on previous reviews, we performed a multifactorial meta-analysis of grazer effects on SOC density on 47 independent experimental contrasts from 17 studies. We explicitly tested hypotheses that grazer effects would shift from negative to positive with decreasing precipitation, increasing fineness of soil texture, transition from dominant grass species with C3 to C4 photosynthesis, and decreasing grazing intensity, after controlling for study duration and sampling depth. The six variables of soil texture, precipitation, grass type, grazing intensity, study duration, and sampling depth explained 85% of a large variation (±150 g m(-2)  yr(-1) ) in grazing effects, and the best model included significant interactions between precipitation and soil texture (P = 0.002), grass type, and grazing intensity (P = 0.012), and study duration and soil sampling depth (P = 0.020). Specifically, an increase in mean annual precipitation of 600 mm resulted in a 24% decrease in grazer effect size on finer textured soils, while on sandy soils the same increase in precipitation produced a 22% increase in grazer effect on SOC. Increasing grazing intensity increased SOC by 6-7% on C4 -dominated and C4 -C3 mixed grasslands, but decreased SOC by an average 18% in C3 -dominated grasslands. We discovered these patterns despite a lack of studies in natural, wildlife-dominated ecosystems, and tropical grasslands. Our results, which suggest a future focus on why C3 vs. C4 -dominated grasslands differ so strongly in their response of SOC to grazing, show that grazer effects on SOC are highly context-specific and imply that grazers in different regions might be managed differently to help mitigate greenhouse gas emissions.


Assuntos
Carbono/análise , Ecossistema , Gado/fisiologia , Solo/química , Animais , Carbono/metabolismo , Comportamento Alimentar , Cadeia Alimentar , Poaceae
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