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Use of Patient-Specific “4D” Tele-Education to Enhance Actual and Perceived Knowledge in Congenital Heart Disease (CHD) Patients

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Congenital Heart Disease 2024年第1期19卷 5-17页

作者： Molly Clarke Karin Hamann Nancy Klein Laura Olivieri Yue-Hin Loke Department of Inpatient Cardiology Boston Children’s HospitalBoston02115USA Department of Cardiology Children’s National HospitalWashington20001USA Department of Cardiology Noninvasive Cardiac ImagingUniversity of Pittsburgh Medical Center Children’s Hospital of PittsburghPittsburgh15224USA

Background:Patients with congenital heart disease(CHD)will transition to lifelong adult congenital cardiac care.However,their structural heart disease is challenging to convey via two-dimensional drawings.This study utilized a tele-educational environment,with personalized three-dimensional(3D)modeling and health Details(3D+Details=“4D”),to improve actual and perceived knowledge,both important components of transition readiness in CHD patients.Methods:Participants aged≥13 years with a history of CHD and cardiac magnetic resonance imaging(MRI)studies were eligible.Cardiac MRI datasets were then used to segment and create 3D heart models(using Mimics,Materialize Inc.).Participantsﬁrst completed the MyHeart Questionnaire,a validated survey of actual knowledge.A tele-educational session was then scheduled,during which participants were shown a 3D model of a normal heart,followed by their personal 3D heart model and speciﬁc health details.Participants then repeated the actual knowledge survey,in addition to questionnaires assessing perceived knowledge pre-and post-session,as well as a satisfaction survey.Results:Twenty-two patients were included.Actual knowledge increased from 75%±15%to 89%±20%(p=0.00043)and perceived knowledge increased inﬁve of seven questions.Actual knowledge correlated with perceived knowledge(r=0.608,p<0.0001).Ninety-one percent of participants ranked the 3D model as“very satisfactory”and ninety-ﬁve percent ranked the educational session as“very help-ful”or“extremely helpful.”Conclusions:The use of“4D”tele-education increased both actual and perceived knowledge and may help improve transition readiness in CHD patients.

关键词： Congenital heart disease tele-education transition

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Evaluation of Clinician Training in Autism Screening, Care Management, and Patient Education

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Open Journal of Pediatrics 2024年第3期14卷 488-513页

作者： Belinda O’Hagan Julie White Ilana Hardesty Rachel Amgott Candice Bangham Xinyang Liu Alyson Codner Amy Ursitti Alana Chandler Sarah Foster Marilyn Augustyn Jacey Greece Division of Developmental and Behavioral Pediatrics Department of Pediatrics Boston Medical Center Boston United States of America boston University Chobanian & Avedisian School of Medicine Boston United States of America Department of Community Health Sciences Boston University School of Public Health Boston United States of America

Objective: The demand for pediatric developmental evaluations has far exceeded the workforce available to perform them, which creates long significant wait times for services. A year-long clinician training using the Extension for Community Healthcare Outcomes (ECHO®) model with monthly meetings was conducted and evaluated for its impact on primary care clinicians’ self-reported self-efficacy, ability to administer autism screening and counsel families, professional fulfillment, and burnout. Methods: Participants represented six community health centers and a hospital-based practice. Data collection was informed by participant feedback and the Normalization Process Theory via online surveys and focus groups/interviews. Twelve virtual monthly trainings were delivered between November 2020 and October 2021. Results: 30 clinicians participated in data collection. Matched analyses (n = 9) indicated statistically significant increase in self-rated ability to counsel families about autism (Pre-test Mean = 3.00, Post-test Mean = 3.89, p = 0.0313), manage autistic patients’ care (Pre-test Mean = 2.56, Post-test Mean = 4.11, p = 0.0078), empathy toward patients (Pre-test Mean = 2.11, Post-test Mean = 1.22, p = 0.0156) and colleagues (Pre-test Mean = 2.33, Post-test Mean = 1.22, respectively, p = 0.0391). Unmatched analysis revealed increases in participants confident about educating patients about autism (70.59%, post-test n = 12 vs. 3.33%, pre-test n = 1, p = 0.0019). Focus groups found increased confidence in using the term “autism”. Conclusion: Participants reported increases in ability and confidence to care for autistic patients, as well as empathy toward patients and colleagues. Future research should explore long-term outcomes in participants’ knowledge retention, confidence in practice, and improvements to autism evaluations and care.

关键词： Autism Spectrum Disorder Program Evaluation Case-Based Training Provider Burnout Continuing Medical Education

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Rationale and design of Tenecteplase Reperfusion Therapy in Acute Ischaemic Cerebrovascular Events III (TRACE III): a randomised, phase III, open- label, controlled trial

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Stroke & Vascular Neurology 2024年第1期9卷 82-89页

作者： Yunyun Xiong Bruce C V Campbell Marc Fisher Lee H Schwamm Mark Parsons Hao Li Yuesong Pan Xia Meng Xingquan Zhao Yongjun Wang Neurology Beijing Tiantan HospitalBeijingChina China National Clinical Research Center for Neurological Diseases BeijingChina Department of Medicine and Neurology The University of MelbourneMelbourneVictoriaAustralia Neurology Beth Israel Deaconess Medical CenterBostonMassachusettsUSA Department of Neurology and Comprehensive Stroke Center Massachusetts General HospitalBostonMassachusettsUSA Department of Neurology University of New South Wales South Western Sydney Clinical SchoolLiverpoolNew South WalesAustralia

Background and purpose Recombinant human TNK tissue-type plasminogen activator(rhTNK-tPA)was not inferior to alteplase for ischaemic stroke within 4.5hours.Our study aimed to investigate the efficacy and safety of rhTNK-tPA in patients who had an ischaemic stroke due to large vessel occlusion(LVO)of anterior circulation beyond 4.5hours.Methods and design Tenecteplase Reperfusion Therapy in Acute Ischaemic Cerebrovascular Events-III(TRACE III)is a multicentre,prospective,randomised,open-label,blind endpoint,controlled clinical trial.Patients who had an ischaemic stroke due to anterior circulation LVO(internal carotid artery,middle cerebral artery M1 and M2 segments)within 4.5–24hours from last known well(including wake-up stroke and no witness stroke)and with salvageable tissue(ischaemic core volume6s at 24 hours and NIHSS score change from baseline at 7days.Safety outcomes are symptomatic intracerebral haemorrhage within 36 hours and mortality at 90 days.Discussion TRACE III will provide evidence for the efficacy and safety of rhTNK-tPA in patients who had an ischaemic strokes due to anterior circulation LVO beyond 4.5hours.Trial registration number NCT05141305.

关键词： Therapy random Rational

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Finding the magnetopause location using soft X-ray observations and a statistical inverse method

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Earth and Planetary Physics 2024年第1期8卷 184-203页

作者： Gonzalo Cucho-Padin Hyunju Connor Jaewoong Jung Brian Walsh David G.Sibeck Space Weather Laboratory NASA Goddard Space Flight CenterGreenbeltMDUSA Department of Physics The Catholic University of AmericaWashingtonDCUSA Geospace Physics Laboratory NASA Goddard Space Flight CenterGreenbeltMDUSA Astronomy Department University of Maryland College ParkCollege ParkMDUSA Center for Space Physics Department of Mechanical EngineeringBoston UniversityBostonMAUSA

Variability in the location and shape of the dayside magnetopause is attributed to magnetic reconnection,a fundamental process that enables the transfer of mass,energy,and momentum from the solar wind into the magnetosphere.The spatial and temporal properties of the magnetopause,under varying solar and magnetospheric conditions,remain largely unknown because empirical studies using in-situ observations are challenging to interpret.Global wide field-of-view(FOV)imaging is the only means to simultaneously observe the spatial distribution of the plasma properties over the vast dayside magnetospheric region and,subsequently,quantify the energy transport from the interplanetary medium into the terrestrial magnetosphere.Two upcoming missions,ESA/CAS SMILE and NASA’s LEXI will provide wide-field imagery of the dayside magnetosheath in soft X-rays,an emission generated by charge exchange interactions between high charge-state heavy ions of solar wind origin and exospheric neutral atoms.High-cadence two-dimensional observations of the magnetosheath will allow the estimation of dynamic properties of its inner boundary,the magnetopause,and enable studies of its response to changes in the solar wind dynamic pressure and interplanetary magnetic field orientation.This work introduces a statistically-based estimation approach based on inverse theory to estimate the spatial distribution of magnetosheath soft X-ray emissivities and,with this,identify the location of the magnetopause over the Sun−Earth line.To do so,we simulate the magnetosheath structure using the MHD-based OpenGGCM model and generate synthetic soft X-ray images using LEXI’s orbit and attitude information.Our results show that 3-D estimations using the described statistically-based technique are robust against Poisson-distributed shot noise inherent to soft X-ray images.Also,our proposed methodology shows that the accuracy of both three-dimensional(3-D)estimation and the magnetopause standoff distance calculation highly depends on the observational point.

关键词： magnetopause soft X-ray tomography

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Targeting epigenetic mechanisms in amyloid-β-mediated Alzheimer’s pathophysiology:unveiling therapeutic potential

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Neural Regeneration Research 2025年第1期20卷 54-66页

作者： Jennie Z.Li Nagendran Ramalingam Shaomin Li Ann Romney Center for Neurologic Diseases Brigham and Women’s Hospital and Harvard Medical SchoolBostonMAUSA

Alzheimer’s disease is a prominent chronic neurodegenerative condition characterized by a gradual decline in memory leading to dementia.Growing evidence suggests that Alzheimer’s disease is associated with accumulating various amyloid-βoligomers in the brain,influenced by complex genetic and environmental factors.The memory and cognitive deficits observed during the prodromal and mild cognitive impairment phases of Alzheimer’s disease are believed to primarily result from synaptic dysfunction.Throughout life,environmental factors can lead to enduring changes in gene expression and the emergence of brain disorders.These changes,known as epigenetic modifications,also play a crucial role in regulating the formation of synapses and their adaptability in response to neuronal activity.In this context,we highlight recent advances in understanding the roles played by key components of the epigenetic machinery,specifically DNA methylation,histone modification,and microRNAs,in the development of Alzheimer’s disease,synaptic function,and activity-dependent synaptic plasticity.Moreover,we explore various strategies,including enriched environments,exposure to non-invasive brain stimulation,and the use of pharmacological agents,aimed at improving synaptic function and enhancing long-term potentiation,a process integral to epigenetic mechanisms.Lastly,we deliberate on the development of effective epigenetic agents and safe therapeutic approaches for managing Alzheimer’s disease.We suggest that addressing Alzheimer’s disease may require distinct tailored epigenetic drugs targeting different disease stages or pathways rather than relying on a single drug.

关键词： Alzheimer’s disease DNA methylation enriched environments histone modification microRNAs non-invasive brain stimulation synaptic plasticity

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Promoting Sickle Cell Trait Awareness and Education: A Typology of Interventions in the United States to Inform Ongoing Efforts to Patients and Providers

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Health 2024年第4期16卷 280-308页

作者： Stacey Cunnington Jacey Greece Department of Community Health Sciences Boston University School of Public Health Boston Massachusetts USA

Research Background: Sickle cell trait has no treatment or cure and predominantly affects people who are Black, but can affect anyone of any race or ethnicity. While commonly incorrectly considered benign by providers and the public, people with a sickle cell trait experience life-threatening outcomes that are exacerbated by extreme conditions. There is a severe lack of awareness and understanding of sickle cell trait and the associated health complications among sickle cell trait carriers and healthcare providers. Purpose/Aim: Interventions that aim to improve awareness of sickle cell trait differ in approaches and are not well documented in the literature. This typology aims to highlight current efforts to inform targeted interventions that raise awareness through consistent messaging, educate people and providers on sickle cell trait and the related health complications, and support the design and implementation of comprehensive sickle cell trait awareness initiatives. Methods: We conducted a scoping review of United States-based sickle cell trait interventions and performed a content analysis to identify the categories and characteristics of these efforts. We then organized the results into a typology according to established protocols. Results: Among 164 interventions, twenty-five (15%) met the typology inclusion criteria described above and were grouped into categories: Seven of twenty-five interventions were Educational Interventions (28%), three of twenty-five interventions (12%) were Combined Screening and Educational-Based Interventions, eight of twenty-five interventions (32%) were Policy and Guideline-Based Intervention, and six of twenty-five interventions (24%) were Sickle Cell Trait Organization-Led Interventions. Conclusions: There is a lack of consistency in messaging across interventions whether delivered by credible healthcare institutions or national organizations, which can result in lack of education and awareness and confusion around sickle cell trait. Categorizing interventions through a t

关键词： Sickle Cell Trait Awareness Sickle Cell Trait Messaging Sickle Cell Trait Intervention Typology Scoping Review

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When Conscious Consumerism Backfires:A Critical Study on Social Exclusion,Partnerships,and White Saviorism

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Journal of Sociology Study 2024年第1期14卷 9-26页

作者： Chidimma Ozor Commer University of Massachusetts BostonUSA

Purpose:What factors influence conscious consumerism,especially related to race and gender identities?This scholarship explores three white women-led social responsibility organizations’(SROs)aspirations to encourage conscious consumerism as well as factors that influence conscious consumerism.Design/methodology/approach:Using the Black feminist thought and sustainability development theory,the data were analyzed using a thematic analysis to explore the activation of the white savior industrial complex(WSIC)in SROs.Interviews provided in-depth knowledge of the SRO culture including,but not limited to,insight on social exclusion and partnerships.Findings:Noonday Collection,Sseko Designs,and Trades of Hope,all SROs,aspire to be dedicated to people,planet,and profit and encourage conscious consumerism as a means for their customer base and sales consultants to“do their part”,and yet,an unintended consequence of the SROs’work is social exclusion and white saviorism.Originality:This scholarship investigates what can be done to dismantle the overreliance of conscious consumerism in an effort to finally strip white saviorism,and its role in the white savior industrial complex(WSIC),of its power.

关键词： the white savior industrial complex(WSIC) Black feminist thought sustainability development theory conscious consumerism race gender

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Inpatient management of iron deficiency anemia in pediatric patients with inflammatory bowel disease: A single center experience

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World Journal of Clinical Pediatrics 2024年第1期13卷 107-117页

作者： Krishanth Manokaran Jonathan Spaan Giulio Cataldo Christopher Lyons Paul D Mitchell Tatyana Sare LoriA Zimmerman Paul A Rufo Center for Inflammatory Bowel Disease Boston Children's HospitalBostonMA 02115United States Institutional Centers for Clinical and Translational Research Boston Children's HospitalBostonMA 02115United States

BACKGROUND Screening for iron deficiency anemia(IDA)is important in managing pediatric patients with inflammatory bowel disease(IBD).Concerns related to adverse reactions may contribute to a reluctance to prescribe intravenous(IV)iron to treat IDA in this population.AIM To track the efficacy and safety of IV iron therapy in treating IDA in pediatric IBD patients admitted to our center.METHODS A longitudinal observational cohort study was performed on 236 consecutive pediatric patients admitted to our tertiary IBD care center between September 2017 and December 2019.92 patients met study criteria for IDA,of which 57 received IV iron,17 received oral iron,and 18 were discharged prior to receiving iron therapy.RESULTS Patients treated with IV iron during their hospitalization experienced a significant increase of 1.9(±0.2)g/dL in mean(±SE)hemoglobin(Hb)concentration by the first ambulatory follow-up,compared to patients who received oral iron 0.8(±0.3)g/dL or no iron 0.8(±0.3)g/dL(P=0.03).One out of 57(1.8%)patients that received IV iron therapy experienced an adverse reaction.CONCLUSION Our findings demonstrate that treatment with IV iron therapy is safe and efficacious in improving Hb and iron levels in pediatric patients with IDA and active IBD.

关键词： Iron deficiency anemia Pediatric inflammatory bowel disease Intravenous iron therapy Inflammatory bowel disease

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Understanding pediatric surgical needs in North Korea: a modeling analysis

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World Journal of Pediatric Surgery 2024年第1期7卷 47-53页

作者： Phillip J Hsu Sangchul Yoon Kee B Park University of Michigan Ann ArborMichiganUSA Department of Global Health and Social Medicine Harvard Medical SchoolBostonMassachusettsUSA Department of Medical Humanitiesand Social Sciences Yonsei University SeoulSouth Korea

Background Sixty-five percent of children worldwide lack access to surgical care,the majority of whom live in low-income and middle-income countries(LMiCs).Developing surgical infrastructure requires information on surgical need;however,this information is often limited in LMICs.North Korea(Democratic People's Republic of Korea,DPRK)has a low amount of publicly available data.Here,we analyzed available modeled data to understand the causes of pediatric deaths due to conditions treatable with surgery in DPRK.Methods We used World Bank data and models from the Institute for Health Metrics and Evaluation to identify causes of pediatric deaths affecting pediatric patients(age<20 years).We compared mortality of disease between DPRK and countries with similar economic status.Results Between 1990 and 2019,the number of overall pediatric deaths has decreased.In 2019,32.2%of allpediatric deaths in DPRK were caused by surgical conditions.The leading categories of surgical conditions were injuries(53.9%),congenital conditions(34.2%),tumors(8.8%),and abdominal conditions(3.2%).DPRK has a lower relative rate of pediatric deaths compared with other LMICs with similar gross domestic product per capita.However,it has a higher relative rate of pediatric deaths due to conditions requiring treatment with surgery.Transport injuries contribute significantly to the high rate of pediatric deaths in DPRK.Conclusions Although DPRK may be allocating overall resources toward pediatric healthcare more efficiently than economic peers,DPRK may benefit from improvement in pediatric surgical capacity.Improved availability of data and close international collaboration could be potential solutions to bridge this gap.

关键词： pediatric surgical injuries

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Intra-arterial tenecteplase during thrombectomy for acute stroke(BRETIS-TNK II):rationale and design

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Stroke & Vascular Neurology 2024年第1期9卷 59-65页

作者： Zi-Ai Zhao Jing Qiu Wei Li Thanh Nguyen Shouchun Wang Huaizhang Shi Ming Wei Feng Wang Di Li Hui-Sheng Chen Department of Neurology General Hospital of Northern Theater CommandShenyangLiaoning ProvinceChina Neurology RadiologyBoston Medical CenterBostonMassachusettsUSA Department of Neurology First Affiliated Hospital of Jilin UniversityChangchunJilinChina Department of Neurosurgery First Affiliated Hospital of Harbin Medical UniversityHarbinHeilongjiangChina Department of Neurosurgery Tianjin Huanhu HospitalTianjinTianjinChina Department of Interventional Therapy First Affiliated Hospital of Dalian Medical UniversityDalianChina Neurological Intervention Department Dalian Municipal Central HospitalDalianLiaoningChina

Background Our recent pilot study suggests intra-arterial tenecteplase(TNK)during the first pass of endovascular treatment(EVT)seems safe,may increase first-pass reperfusion and good outcome in acute ischaemic stroke(AIS)patients with large-vessel occlusion(LVO).Aims To determine the efficacy and safety of intra-arterial TNK administration during EVT in AIS-LVO patients presenting up to 24 hours from symptom onset.Sample size estimates A maximum of 380 patients are required to test the superiority hypothesis with 80%power according to a two-side 0.05 level of significance,stratified by age,gender,baseline systolic blood pressure,prestroke modified Rankin Scale(mRS),baseline National Institute of Health stroke scale,baseline ASPECTS,time from onset to groin puncture,intravenous thrombolysis before EVT,stroke territory and stroke aetiology.Design Intra-arterial TNK during thrombectomy for acute stroke(BRETIS-TNK II)study is a prospective,randomised,adaptive enrichment,open-label,blinded end point,multicentre study.Eligible AIS-LVO patients are randomly assigned into the experimental group and control group with a ratio of 1:1.The experimental group will be treated with intra-arterial infusion of TNK during EVT.The control group will be treated with standard EVT.Outcome The primary end point is a favourable outcome,defined as an mRS score of 0–2 at 90 days.The primary safety end point is symptomatic intracranial haemorrhage within 48 hours,which is defined as an increase in the National Institutes of Health Stroke Scale score of≥4 points as a result of the intracranial haemorrhage.Conclusions The results of BRETIS-TNK II will provide evidence for the efficacy and safety of intra-arterial TNK administration during EVT in AIS patients with LVO.

关键词： rational stratified TNK

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