Project description:The Mendelian Phenotype Search Engine (MPSE), a clinical decision support tool using Natural Language Processing and Machine Learning, helped neonatologists expedite decisions to whole genome sequencing (WGS) to diagnose patients in the neonatal intensive care unit. After the MPSE was introduced, utilization of WGS increased, time to ordering WGS decreased, and WGS diagnostic yield increased.
Project description:Background and objectiveObtaining informed consent in neonatal emergency research is challenging. The aim of this study was to assess parental perceptions of informed consent following participation in a clinical trial in neonatal emergency care.MethodsThis was a supplementary analysis of a randomised controlled trial comparing video and direct laryngoscopy for neonatal endotracheal intubation in the delivery room and neonatal intensive care unit. After obtaining informed consent for the clinical trial, parents were asked to answer a series of self-administered questions about their perceptions of clinical trial participation and the consent process. Informed consent had been given either before birth, after birth but before inclusion in the trial, or after inclusion in the trial.ResultsWe received responses from 33 mothers and 27 fathers (n = 60) of the 63 preterm and term infants who participated in the study. Fifty-three (89.8%, n = 59) parents agreed that infants should participate in clinical trials, and 51 (85%, n = 60) parents agreed that parents should be asked for informed consent. Fifty-three (89.8%, n = 59) parents felt that their infant's participation in this particular trial would be beneficial. Fifty-two (86.7%, n = 60) parents felt that the informed consent process was satisfactory. One parent (100%, n = 1) approached before birth, 23 parents (82.1%, n = 28) approached after birth but before enrolment and 26 (83.9%, n = 31) parents approached after enrolment were satisfied with the timing of the consent process. Eight (13.3%, n = 60) parents felt some pressure to provide informed consent. Of these, two (25%) were approached before enrolment and six (75%) were approached after enrolment.ConclusionParents valued their infant's participation in an emergency neonatal clinical trial and considered it important to be asked for consent. In this study, it seemed less important whether consent was obtained before or after the intervention. Future studies may need to investigate which form of consent is most acceptable to parents for the individual study in question.
Project description:BackgroundClinical decision support (CDS) improves nutrition delivery for infants in the neonatal intensive care unit (NICU), however, the prevalence of CDS to support nutrition is unknown.MethodsOnline surveys, with telephone and email validation of responses, were administered to NICU clinicians in the Children's Hospital Neonatal Consortium (CHNC). We determined and compared the availability of CDS to calculate calories and fluid received in the prior 24 h, stratified by enteral and parenteral intake, using McNemar's test.ResultsClinicians at all 34 CHNC hospitals responded with 98 of 108 (91%) surveys completed. NICUs have considerably less CDS to calculate enteral calories received than enteral fluid received (32% vs. 82%, p < 0.001) and less CDS to calculate parenteral calories received than parenteral fluid received (29% vs. 82%, p < 0.001).DiscussionMost CHNC NICUs are unable to reliably and consistently monitor caloric intake delivered to critically ill infants at risk for growth failure.
Project description:AimTo investigate the frequency, etiology, and current management strategies for diarrhea in newborn.MethodsRetrospective, nationwide study involving 5801 subjects observed in neonatal intensive care units during 3 years. The main anamnesis and demographic characteristics, etiology and characteristics of diarrhea, nutritional and therapeutic management, clinical outcomes were evaluated.ResultsThirty-nine cases of diarrhea (36 acute, 3 chronic) were identified. The occurrence rate of diarrhea was 6.72 per 1000 hospitalized newborn. Etiology was defined in 29 of 39 newborn (74.3%): food allergy (20.5%), gastrointestinal infections (17.9%), antibiotic-associated diarrhea (12.8%), congenital defects of ion transport (5.1%), withdrawal syndrome (5.1%), Hirschsprung's disease (2.5%), parenteral diarrhea (2.5%), cystic fibrosis (2.5%), and metabolic disorders (2.5%). Three patients died due to complications related to diarrhea (7.7%). In 19 of 39 patients (48.7%), rehydration was performed exclusively by the enteral route.ConclusionDiarrhea in neonates is a challenging clinical condition due to the possible heterogeneous etiologies and severe outcomes. Specific guidelines are advocated in order to optimize management of diarrhea in this particular setting.
Project description:Healthcare professionals, especially nurses, play a central role in supporting parents during their stay in neonatal intensive care units (NICUs). Fathers often have their own support needs; however, studies have shown that these needs are rarely met to the same degree as those of the mothers. We developed a "father-friendly NICU" with the aim of providing good-quality care to the entire family. To evaluate the impact of this concept, we adopted a quasi-experimental design; using the Nurse Parent Support Tool (NPST), we investigated the differences in the fathers' (n = 497) and mothers' (n = 562) perception of the nursing support received on admission and discharge between before and after the intervention. In the historical control and intervention groups, the fathers' median NPST scores at admission were 4.3 (range, 1.9-5.0) and 4.0 (range, 2.5-4.8), respectively (p < 0.0001); at discharge, these scores were 4.3 (range, 1.6-5.0) and 4.4 (range, 2.3-5.0), respectively (difference not significant). In the historical control and intervention groups, the mothers median NPST scores at admission were 4.5 (range, 1.9-5.0) and 4.1 (range, 1.0-4.8), respectively (p < 0.001); at discharge, these scores were 4.4 (range, 2.7-5.0) and 4.4 (range, 2.6-5), respectively (difference not significant). The parental perception of support did not increase after the intervention; however, the parents reported a high level of staff support both before and after the intervention. Further studies should focus on parental support needs during the different phases of hospitalization (i.e., admission, stabilization, and discharge).
Project description:BACKGROUND:Recruitment into research studies in the neonatal intensive care unit has been problematic. Therefore suggestions have been made to take decision making about enrollment out of the hands of the parents. OBJECTIVE:To understand parental perceptions of the process of recruitment and enrollment for research in the neonatal intensive care unit. METHOD:A questionnaire was developed and used in both a retrospective survey and a prospective study of parents whose newborns were enrolled in trials in a neonatal intensive care unit. Closed ended and open ended questions were included, as well as demographic questions. RESULTS:The retrospective survey had a 79% response rate (29 of 38). Overall, 90% of parents felt that they had made informed decisions, and 93% were against the option that a doctor decide if the newborn should be enrolled into a study, rather than the parent. Although some parents (38%) found that recruitment did add "stress to an already stressful situation", 90% felt that they had made informed decisions and understood the elements of the study. Most parents had been requested to enroll their newborn into more than one trial, and, on average, they thought that they would be comfortable with enrollment into two studies (range 0-6). When asked how the process could be improved, parents suggested that information be made available before delivery. The responses of parents in the prospective study were mostly consistent with those from the retrospective survey. CONCLUSIONS:Overall the parents did not support the suggestion that decision making about enrollment be taken away from parents and put into the hands of doctors. The healthcare team should support parents in their role of decision maker, enhance availability of the research staff, and provide more information about the research.
Project description:ObjectivesPhysician-facing decision support tools facilitate shared decision-making (SDM) during informed consent, but it is unclear whether they are comprehensive in the domains they measure. In this scoping review, we aimed to (1) identify the physician-facing tools used during SDM; (2) assess the patient-centered domains measured by these tools; (3) determine whether tools are available for older adults and for use in various settings (elective vs. emergent); and (4) characterize domains future tools should measure.MethodsUsing the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews, Embase, Medline, and Web of Science were queried for articles published between January 2000 and September 2022. Articles meeting inclusion criteria underwent title and abstract review. Eligible studies underwent data abstraction by two reviewers.ResultsOf 4365 articles identified, 160 were eligible. Tools to aid in surgical SDM focus on elective procedures (79%) and the outpatient setting (71%). Few tools are designed for older adults (5%) or for nonelective procedures (9%). Risk calculators were most common, followed by risk indices, prognostic nomograms, and communication tools. Of the domains measured, prognosis was more commonly measured (85%), followed by alternatives (28%), patient goals (36%), and expectations (46%). Most tools represented only one domain (prognosis, 33.1%) and only 6.7% represented all four domains.Conclusions and implicationsTools to aid in the surgical SDM process measure short-term prognosis more often than patient-centered domains such as long-term prognosis, patient goals, and expectations. Further research should focus on communication tools, the needs of older patients, and use in diverse settings.
Project description:ObjectiveTo investigate whether NICU discharge summaries documented neonatal AKI and estimate if nephrology consultation mediated this association.Study designSecondary analysis of AWAKEN multicenter retrospective cohort.ExposuresAKI severity and diagnostic criteria.OutcomeAKI documentation on NICU discharge summaries using multivariable logistic regression to estimate associations and test for causal mediation.ResultsAmong 605 neonates with AKI, 13% had documented AKI. Those with documented AKI were more likely to have severe AKI (70.5% vs. 51%, p < 0.001) and SCr-only AKI (76.9% vs. 50.1%, p = 0.04). Nephrology consultation mediated 78.0% (95% CL 46.5-109.4%) of the total effect of AKI severity and 82.8% (95% CL 70.3-95.3%) of the total effect of AKI diagnostic criteria on documentation.ConclusionWe report a low prevalence of AKI documentation at NICU discharge. AKI severity and SCr-only AKI increased odds of AKI documentation. Nephrology consultation mediated the associations of AKI severity and diagnostic criteria with documentation.