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1.
BMC Health Serv Res ; 21(1): 1159, 2021 Oct 26.
Artigo em Inglês | MEDLINE | ID: mdl-34702268

RESUMO

BACKGROUND: Pediatric Early Warning Scores (PEWS) are nurse-administered clinical assessment tools utilizing vital signs and patient signs and symptoms to screen for patients at risk for clinical deterioration.1-3 When utilizing a PEWS system, which consists of an escalation algorithm to alert physicians of high risk patients requiring a bedside evaluation and assessment, studies have demonstrated that PEWS systems can decrease pediatric intensive care (PICU) utilization, in-hospital cardiac arrests, and overall decreased mortality in high income settings. Yet, many hospital based settings in low and lower middle income countries (LMIC) lack systems in place for early identification of patients at risk for clinical deterioration. METHODS: A contextually adapted 16-h pediatric resuscitation program included training of a PEWS tool followed by implementation and integration of a PEWS system in a pediatric hematology/oncology ward in Beit Jala, Palestine. Four PDSA cycles were implemented post-implementation to improve uptake and scoring of PEWS which included PEWS tool integration into an existing electronic medical record (EMR), escalation algorithm and job aid implementation, data audits and ward feedback. RESULTS: Frequency of complete PEWS vital sign documentation reached a mean of 89.9%. The frequency and accuracy of PEWS scores steadily increased during the post-implementation period, consistently above 89% in both categories starting from data audit four and continuing thereafter. Accuracy of PEWS scoring was unable to be assessed during week 1 and 2 of data audits due to challenges with PEWS integration into the existing EMR (PDSA cycle 1) which were resolved by the 3rd week of data auditing (PDSA cycle 2). CONCLUSIONS: Implementation of a PEWS scoring tool in an LMIC pediatric oncology inpatient unit is feasible and can improve frequency of vital sign collection and generate accurate PEWS scores. CONTRIBUTION TO THE LITERATURE: This study demonstrates how to effectively implement a PEWS scoring tool into an LMIC clinical setting. This study demonstrates how to utilize a robust feedback mechanism to ensure a quality program uptake. This study demonstrates an effective international partnership model that other institutions may utilize for implementation science.


Assuntos
Deterioração Clínica , Escore de Alerta Precoce , Neoplasias , Criança , Hospitais , Humanos , Unidades de Terapia Intensiva Pediátrica , Oncologia
2.
Artigo em Inglês | MEDLINE | ID: mdl-36896705

RESUMO

Objective: In 2021, the Clinical Genome Resource (ClinGen) amyotrophic lateral sclerosis (ALS) spectrum disorders Gene Curation Expert Panel (GCEP) was established to evaluate the strength of evidence for genes previously reported to be associated with ALS. Through this endeavor, we will provide standardized guidance to laboratories on which genes should be included in clinical genetic testing panels for ALS. In this manuscript, we aimed to assess the heterogeneity in the current global landscape of clinical genetic testing for ALS. Methods: We reviewed the National Institutes of Health (NIH) Genetic Testing Registry (GTR) and members of the ALS GCEP to source frequently used testing panels and compare the genes included on the tests. Results: 14 clinical panels specific to ALS from 14 laboratories covered 4 to 54 genes. All panels report on ANG, SOD1, TARDBP, and VAPB; 50% included or offered the option of including C9orf72 hexanucleotide repeat expansion (HRE) analysis. Of the 91 genes included in at least one of the panels, 40 (44.0%) were included on only a single panel. We could not find a direct link to ALS in the literature for 14 (15.4%) included genes. Conclusions: The variability across the surveyed clinical genetic panels is concerning due to the possibility of reduced diagnostic yields in clinical practice and risk of a missed diagnoses for patients. Our results highlight the necessity for consensus regarding the appropriateness of gene inclusions in clinical genetic ALS tests to improve its application for patients living with ALS and their families.


Assuntos
Esclerose Lateral Amiotrófica , Humanos , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/genética , Mutação , Testes Genéticos/métodos , Proteína C9orf72/genética
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