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Background: Covid redefined how the world functions. The electrophysiology (EP) community identified multiple needs that arose due to this paradigm and redefined workflows. The geographic paucity of experienced clinical mapping support was a crucial issue that limited the worldwide adoption of complex ablation procedures. Objective(s): To ascertain the feasibility and safety of utilizing a novel software for remote mapping and remote clinical support for all spectrums of cardiac ablation procedures and to compare the adoption of ablation technology in that geography. Method(s): Ablation procedures performed at Metromed International Cardiac Centre (MICC), India were included in this early feasibility analysis (EFA). All procedures were performed by a single EP operator. Remote Clinical support was provided by an EP physician (primary operator's sibling) in the USA. All mapping was performed by an experienced mapper from a remote location 400 miles away from the primary EP operator in India. The mapping system utilized was Ensite Precision with SJM Connect software. Result(s): 300 contiguous ablation procedures from 2020 to 2022 were included in this EFA. The proprietory SJM Connect software allows remote access to the Ensite console via a secured connection. The software requires the operator to be granted access to the Ensite console via a permission request that must be acknowledged on the Ensite Console. The software will then allow the remote operator to levels of access to the system, view-only access, or complete control of the console to provide full remote support. Communication occurs between the remote user and the console via a chat function and over a voice call. This remote connection can be terminated at any time from either the console or the remote operator. There is no PHI displayed. Results detailing case demographics and acute procedural success and safety will be presented. Results comparing the adoption of ablation technology with the previous 3 years in this geography will be presented. Conclusion(s): This EFA demonstrates the safety and efficacy of using remote clinical support and remote mapping for ablation procedures. This opens a world of possibilities including the expansion of ablation technology to all corridors of the world with experienced clinical and mapping support connecting the EP community on a worldwide platform. Additional studies and strategies are needed to further understand the implication of remote support algorithms in bridging the healthcare gaps in the field of cardiac EP. [Formula presented]Copyright © 2023
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Background: The use of cryopreservation for stem cell grafts for both autologous stem cell and allogeneic cord blood transplant has been utilized for years. For other allogeneic stem cell transplant sources, the use of fresh collected grafts has been preferred due to concerns that cryopreservation may result in impaired graft function. With the onset of the COVID-19 pandemic a shift was made at our institution to exclusive use of cryopreservation Methods: In this retrospective single-center analysis a total of 133 patients undergoing allogeneic stem cell transplant at the University of Minnesota between 1/2018-6/2021 for a variety of malignancies were included, with 62 patients receiving fresh stem cell product and 71 patients receiving frozen stem cell product. Univariate statistical analysis was performed. Result(s): There was no significant difference between the two groups with regards to product type, sex, age, diagnosis (acute leukemia vs other), disease risk index, conditioning regimen, Karnofsky score, co-morbidity index, or cell dose (Table 1). Donor type was notably different between the two groups (p<0.01): matched sibling grafts were more commonly used for fresh products than frozen (85% vs. 35%), while matched unrelated donors were used more frequently for frozen than for fresh products (54% vs. 6%). Use of frozen product was associated with delayed neutrophil and platelet engraftment compared to fresh (median days to engraftment 15 vs 12 for neutrophils, 23 vs 17 for platelets, p<0.01 for both). Two-year relapse rates were significantly lower for frozen products (4%) than fresh (24%) (Table 2). This may be partially attributable to differences in follow up between the groups, as fresh products had a total of 910 days of follow up vs 432 for frozen products (P<0.0001). The difference in follow up remained statistically significant if the data was censored at 730 days (P<0.0001). Of note, the use of frozen products was associated with a lower rate of chronic graft-versus-host disease at one year post-transplant (p<0.01). There was no significant difference in the rates of acute GVHD between the groups. There were significant differences in GVHD prophylaxis regimens between the fresh and frozen groups (p<0.01). (Figure Presented)Two-year overall survival did not differ between groups (p=0.96). Conclusion(s): Use of cryopreserved stem cell products is associated with similar efficacy and outcomes as those seen with the use of fresh stem cell products. Although the data presented here suggest novel finding of decreased risk of relapse and chronic GVHD with the use of frozen stem cell products, additional follow up may abrogate these differences. Regardless, the logistical benefits of cryopreservation make this an attractive option for continued use in allogeneic transplants and our data presented here suggests that cryopreserved products remain an appropriate option for allogeneic stem cell transplant.Copyright © 2023 American Society for Transplantation and Cellular Therapy
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Background: A small Midwest cystic fibrosis (CF) center gained child life support in fall of 2016, but availability was limited due to sharing full-time equivalents (FTEs) between 31 outpatient subspecialty clinics. Child life involvementwas often restricted to immediate stressors (e.g., throat swabs, blood draws, first pulmonary function tests) in a reactive approach, but in the summer of 2020, the child life team added FTEs, increasing the ability for a primary child life specialist (CLS) to be more integrated into the clinic workflow. Partnering with the nurse care coordinators, a comprehensive, proactive approach to the integration of child life was formed, focusing on full scope of practice. Method(s): CFregistered nurse care coordinators collaborated with the CLSto discuss the goal of integration while understanding knownpatient stressors and optimal developmental and coping goals for patients younger than 19 and their siblings. We also determined ways to reduce disruption to clinic workflowwhile leveraging scheduling and increasing awareness of scope of practice of the interdisciplinary team, patients, and families. The CLS also obtained feedback from the family advisory committee engrained in clinic along with hosting a booth at the center's annual CF familyevent that targets caregivers of children with CF. Throughout each of these formative actions,(Figure Presented) Figure 1. : Child life integration protocol the primary focus was on collaboration with the interdisciplinary team, employing the full scope of practice of the CLS, mitigating logistical barriers, and optimizing patient experience and satisfaction. Result(s): The current plan (Figure 1) is based on identified time points where developmentally appropriate interventions and resources are implemented in a stepwise fashion, building upon itself. Interventions are individualized for each patient or family member based on coping and learning needs or developmental differences and are completed by the CLS based on professional judgment and after assessment and rapport is built. The scope of practice includes preparation for procedures or changes in the plan of care, procedural support, creation of coping plans for in-clinic and at-home care routines or events, educational activities and resources (e.g., making slime to learn about mucus, word searches about medications), therapeutic activities to support emotional processing of chronic illness, providing information on typical growth and development to caregivers, and facilitating developmentally appropriate transition-readiness goals through CF R.I.S.E. materials. During the COVID global pandemic, changes to outpatient clinic, including addition of virtual appointments, allowed the CLS to expand practice further. In these video appointments, teen patients appear to be more engaging and talkative, allowing the CLS to better assess coping, adherence, and transition readiness in a relaxed Table 1. Two-way table depicting concordance between substance use and mental health screening results at same encounter. General Anxiety Disorder (GAD7) and Patient Health Questionnaire (PHQ9) results were aggregated such that a positive screening result on either was compared with neither being positive.(Table Presented) environment more suited to their developmental needs. Based on the success of having video appointments with adolescent patients without caregivers present, the CLS and the registered nurse care coordinators agreed to include these moving forward. Conclusion(s): The integration of the CLS at full scope of practice benefits not only patients and families, but also the interdisciplinary team and clinic as a whole. By taking a proactive and preventative approach, coping and psychosocial concerns can be navigated throughout the developmental stages with greater stability and emotional safety for patients and their familiesCopyright © 2022, European Cystic Fibrosis Society. All rights reserved
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Introduction: Allogeneic hematopoietic stem cell transplantation (alloHSCT) is a potentially curative option for patients with hematologic diseases. When considered candidates, patients face barriers to receive a transplant. Therefore, we aimed to analyze factors that limit or favor access to an alloHSCT in a population that has been HLA typed and therefore with a potential intent-to-transplant. Method(s): We retrospectively reviewed records from 2015 until the start of the COVID19 pandemic in two Mexican government- funded transplant centers and one private that have in-house HLA typing;in two of them, an outpatient transplant strategy is followed for most patients. HLA-typed patients who were potentially eligible for transplantation were included and their outcomes were assessed in an intent-to-transplant basis. We compared the outcomes of patients who underwent transplantation to those who did not and evaluated contributing barriers to access alloHSCT with multivariate logistic regression. Result(s): A total of n=374 patients were analyzed. The median age at HLA-typing was 35 years (IQR 23-47);59.3% had acute(Table Presented) leukemia, 17.4% bone marrow failure or myelodysplastic neoplasms, 13.1% lymphoma, 8% myeloproliferative neoplasms, 1.1% chronic lymphocytic leukemia and 1.1% multiple myeloma. Most patients (55.9%) had government insurance coverage. Median time from diagnosis to HLA-typing was 8 months (IQR 3-19). The majority had a potential donor (94.4%): 56.4% haploidentical, 37.4% a matched sibling donor and 0.5% an unrelated donor. Almost half of them received a transplant (n=185, 49.5%), the median time from HLA-typing to alloHSCT was 2 months (IQR 1-5.5). Disease activity or progression was the biggest barrier for transplantation;Table 1. Donor availability limited transplant access for 12.1% of patients. Access to transplantation was favored by private/out-of-pocket payment (OR 2.1 95% CI 1.3-3.4), and receiving care in the outpatient center (OR 6.4 95% CI 4-10.0), while HLA matching was not (OR 1.2 95% CI 0.8-1.8). Non-relapse mortality in alloHSCT was 21%. Median overall survival (OS) from the intent-to-transplant cohort was 16 months (CI 95% 12.4-19.6). An OS landmark analysis for patients alive at or beyond 2 months (the median time from HLA-typing to alloHSCT) showed prolonged survival in alloHSCT (30 vs 12 months, p <.001), Figure 1. By the time of the analysis 159 patients (42.5%) were still alive and 115 (30.7%) were event-free.(Figure Presented)Conclusion: The most frequent barrier to transplantation was the disease itself, followed by the transplant waitlist and comorbidities. Access to resources and an outpatient strategy or "center effect" favored alloHSCT. In the era of haploidentical transplantation, donor availability was a smaller issue. Efforts to improve timely referrals and access to effective pre-transplant therapies should be undertaken.Copyright © 2023 American Society for Transplantation and Cellular Therapy
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We report two cases of mixed infection caused by Varicella Zoster and COVID-19 in sibling adolescents. We describe the disease course and provide the results of laboratory examination. High prevalence of these infections necessitates timely verification of the diagnosis and causal therapy. Particular attention should be paid to people with a high risk of pneumonia. Timely vaccination of children against Varicella Zoster and COVID-19 is increasingly important now. The aim of this article is to draw attention to the problem of this coinfection. It allows us to accumulate the data on such cases, identify the risk factors, as well as risk factors for complications.Copyright © 2022, Dynasty Publishing House. All rights reserved.
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Introduction: Wolman disease is a rare genetic disorder with an autosomal recessive inheritance. A mutation in the LIPA gene causes lysosomal acid lipase (LAL) deficiency results in lipid storage and adrenal insufficiency. Death in early infancy is due to liver failure. Patients and methods: We describe the clinical course of a three-month-old infant diagnosed with Wolman disease. A rapid mutational analysis confirmed a LIPA gene defect. Results: He underwent matched unrelated donor peripheral blood stem cell hematopoietic stem cell transplantation (HSCT) at 3 months of age, with a treosulfan-based conditioning, which resulted in engraftment with donor-derived hematopoietic cells. He required supportive care for sinusoidal obstruction syndrome and mucositis. He was administered low dose prednisolone for grade I skin graft versus host disease, and a complete donor chimerism was documented on several occasions. At one year post HSCT, his growth and development were optimal, and there was no hepatosplenomegaly. He is maintained on glucocorticoid and mineralocorticoid supplements for primary hypoaldosteronism. Conclusion: The case emphasizes the timely diagnosis and the potential for successful treatment of Wolman disease by HSCT. © 2022 Pediatric Hematology Oncology Chapter of Indian Academy of Pediatrics
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The Hermanos Ameijeiras Hospital (HAH) in Havana is the only center performing allogeneic hematopoietic stem cell transplantation (HSCT) in adult patients in Cuba. Because transplants from unrelated donors are not possible due to political restrictions and economic embargo, in 2016 HAH and University of Illinois at Chicago (UIC) started a collaboration to support the training of a physician, annual educational programs and exchange of guidelines and protocols to perform haploidentical transplants. The first haploidentical transplant was performed at HAH in 2016. Because of limited resources, disease risk stratification is based on morphologic assessment, as cytogenetic is tested on an irregular basis. Peripheral blood stem cells (PBSC) were infused based on total nucleated cell count (TNC) due to lack of reagents for flow cytometry. Posttransplant chimerism and CMV monitoring cannot be performed. Transplant activity was stopped in 2020 due to high expenses allocated for COVID19 pandemic in Cuba. From 2016 to 2020, 16 haploidentical HSCT in 15 patients (9 males/ 6 females) were completed at HAH. The median age of patients was 34 years (range:21-54). Diagnoses included: acute leukemia, n=12, myelodysplastic syndrome, n=1, Hodgkin disease, n=1, and severe aplastic anemia, n=1. At the time of transplant, 11 patients were in morphologic remission and 5 had active disease. Conditioning regimens utilized were myeloablative (Flu/Bu) in 10 cases and at reduced intensity (Flu/Cy/ TBI200 +/- ATG) in 6 cases, and GVHD prophylaxis was standard PTCy on D3 and 4, CsA and mycophenolate. The donors were mother (n=10), father (n=1), child (1), or sibling (n=3) and the median age was 48 years (range: 26-68). All patients received fresh stem cells from PBSC(n=13) or bone marrow (n=3). Median cell dose infused was 5.5x108 TNC/kg (range: 2.2-8). All patients but 1 engrafted and median time to neutrophil and platelet engraftment was 17 days (range:12-28) and 16 days (range:11-30), respectively. Acute graft-versus-host disease (GVHD) grade 2-3 occurred in 50% of patients and chronic GVHD in 2 out of 8 that were evaluable. Day 100 and 2-year overall survival rates were 73% and 40%, respectively. With a medium follow-up of 18.8 months (range: 0.3-64), 5 of 15 patients (30%) are alive and complete remission. Causes of death in the remaining 10 patients included relapse of original disease, n= 4;bacterial infection, n=2;brain hemorrhage, n=1;VOD, n=1;graft failure, n=1;and multi-organ failure, n=1. Despite significant difficulties, HAH implemented a haploidentical transplant program for adult patients in Cuba. Among future steps, improving access to molecular testing and using younger donors will be pursued to improve on the results. The partnership between HAH and UIC has been instrumental in building clinical and research capacity and continues to support HAH in its mission to provide care to patients in Cuba.(Figure Presented)Copyright © 2023 American Society for Transplantation and Cellular Therapy
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Background: Cyclophosphamide (Cy) is used in hematopoietic stem cell transplant (HSCT) preparative regimens and lymphodepletion for chimeric antigen receptor T-cell (CAR-T) therapy. We describe a case of cyclophosphamide hypersensitivity in a pediatric patient during CAR-T therapy. Case description: A 13 year old boy was diagnosed with very high risk ALL in 2015 and had 2 isolated CNS relapses treated with intensified chemotherapy (chemo) and cranial radiation (1st relapse) and Blinatumomab with intrathecal (IT) chemo followed by sibling donor HSCT (2nd relapse). At age 19, and 18 months after HSCT, he had a 3rd CNS relapse treated with IT chemo and referral for CAR-T therapy. At our center, leukapheresis and CAR-T production (Novartis) were performed. Later, during lymphodepletion with fludarabine (Flu) and Cy, physiologic replacement hydrocortisone (HC) was briefly held to prevent interference with CAR-T function. After 3 days of Flu/Cy, he developed fever and hypotension requiring inotropic support. Hypotension and fever resolved with stress dose HC and antibiotics and was attributed to culture-negative sepsis and adrenal crisis. CAR-T infusion was subsequently delayed by skin GVHD requiring glucocorticoids and COVID-19 infection treated with convalescent plasma and nirmatrelvir/ritonavir. Physiologic HC replacement was continued when he was re-admitted for CAR-T therapy, but he again developed fever, diffuse erythema and shock in hours following the first dose of Cy necessitating stress dose HC, antibiotics, inotropes, and mechanical ventilation. Negative blood cultures and ongoing physiologic HC replacement suggested an alternative explanation for shock. Case reports of anaphylaxis to Cy metabolites implicated Cy as the causative agent so it was discontinued. After recovery, CAR-T cells were infused without complications. In the following weeks, he had no evidence of recurrent leukemia but was persistently pancytopenic. A sibling donor stem cell boost was proposed but the patient accepted only palliative care. He had several opportunistic infections before succumbing to E. coli sepsis. Discussion(s): The first episode of shock was initially attributed to adrenal crisis and sepsis, although no organism was identified. The second episode appeared anaphylactic in timing and clinical presentation with adequate HC replacement and negative cultures, suggesting Type I hypersensitivity. The patient previously received Cy uneventfully before HSCT, suggesting that the donor-derived immune system was the source of new Cy hypersensitivity. Onset of anaphylaxis within hours rather than minutes after Cy administration supports hypersensitivity to Cy metabolites rather than to the drug itself. This case highlights the importance of consideration of sensitivity to Cy metabolites as well as acquired donor-specific allergy even when alternative explanations are likely.Copyright © 2023 American Society for Transplantation and Cellular Therapy
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Background: Allogeneic hematopoietic cell transplantation (HCT) with ex vivo T cell receptor (TCR) alphabeta+ T cell and CD19+ B cell depletion is an effective approach for children with primary immune deficiency disorders (PIDD) as it combines advantages of high CD34+ cell dose facilitating rapid engraftment with low risk of Graft Versus Host Disease (GVHD). The ideal pre-conditioning regimen that facilitates robust donor engraftment without increasing risk of transplant related mortality has not been well defined with this approach. Method(s): We report the outcomes of 4 pediatric subjects: Chronic Granulomatous Disease (CGD) (2), Wiskott Aldrich Syndrome (WAS) (1), and RAC2 deficient Severe Combined Immunodeficiency (1) who underwent haploidentical HCT with TCRalphabeta+ T cell/CD19+ depletion at Johns Hopkins All Children's Hospital/Moffitt Cancer Center from 2020-2022 (NCT04414046). Pre-conditioning regimen consisted of distal thymoglobulin (7.5 mg/kg), fludarabine (175 mg/m2), thiotepa (10 mg/kg) and pharmacokinetic guided busulfan targeting a cumulative area under curve (cAUC) (65-75 mgxhr/L). Rituximab (200 mg/m2) was administered on day +1. Result(s): The median age at HCT was 51 months (range 10-163 months). All patients received mobilized peripheral blood stem cells from HLA- haploidentical donors (paternal=1, maternal=1 sibling=2). Median busulfan cAUC for all patients was 69 mgxhr/L (range 65-76). Median CD34 and TCR alphabeta T cell dose was 9.13x106 cells/kg (range 7.0-18.9x106) and 0.7x105 cells/kg (range 0.09-1.0x105). Median times to neutrophil and platelet engraftment were 11 days (9-12) and 11 days (range 8-15), respectively. All 4 patients are alive with median follow-up of 19.5 months (range 7-24). One patient developed late VOD without organ dysfunction that resolved with defibrotide. At last follow up, peripheral T and myeloid chimerisms exceeded 90% in all 4 patients. Average time to CD4 recovery (> 200x106/L) was 142 days. Pre-existing inflammatory bowel disease in CGD (n=1) and WAS (n=1) patients resolved immediately following transplant. There was no graft failure, and none developed Grade III-IV acute or extensive chronic GVHD. Patient with WAS developed recurrent autoimmune cytopenias requiring corticosteroids, rituximab, sirolimus and daratumumab, and ultimately resolved. Viral reactivations included EBV (n= 1), adeno (n= 1), HHV6 (n= 2), BK (n=1), norovirus (n=1), and late HSV (n=1), all responded to antivirals without disease. All patients acquired SARS-Cov-2 after transplant and recovered without sequelae. Conclusion(s): TCR alphabeta+ and CD19+ depleted haploidentical transplantation using a reduced toxicity conditioning regimen with pharmacokinetic guided busulfan, fludarabine, thiotepa and thymoglobulin is well-tolerated in young children with PIDD that results in rapid, durable engraftment with low likelihood of GVHD and graft rejection.Copyright © 2023 American Society for Transplantation and Cellular Therapy
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Background: Nutrition therapy is crucial in the management of aminoacidopathies. The goal during critical illness is to reverse catabolism by providing sufficient energy and non-offending amino acids (AAs). If the patient's condition is unstable, tolerance of adequate enteral nutrition (EN) to promote anabolism may not be feasible. Parental nutrition (PN) may be necessary to meet nutrition goals, however standard preparations of PN are contraindicated. Integrity Compounding Pharmacy [Sandy Springs, GA] offers specialty compounding options tailored to provide PN to critically ill patients with aminoacidopathies void of offending AAs. Method(s): Retrospective chart review was performed. Patient Awas a 4-day old twin female born at 31-weeks gestation with phenylketonuria (PKU) hospitalized for prematurity and respiratory failure. Patient B was a 4-day old female, sibling of patient A, also with PKU hospitalized due to prematurity, respiratory failure and ductal dependent pulmonic stenosis. Patient C was a 26 year old male with maple syrup urine disease (MSUD) admitted for metabolic decompensation and respiratory failure in the setting of novel Covid-19 virus. Patient Dwas an 8 year old female with MSUD presenting with nausea and vomiting in the setting of novel Covid-19 virus. All four patients experienced elevated blood levels of offending AAs and inadequate EN intake. Custom PN from Integrity Compounding Pharmacy was utilized in all four patients ranging from 6 to 11 days. Patient A, B and D received custom PN as sole source nutrition for a period of time while transitioning to EN. Patient C tolerated a small amount of EN as well as custom PN to meet nutrition goals. Result(s): The Integrity custom PN provided appropriate AAs to optimize nutrition until full EN could be tolerated. This essential nutrition therapy helped reverse catabolism, achieve metabolic control and prevent further sequelae. Conclusion(s): Custom PN should be considered in critically ill patients with aminoacidopathies that have significant EN intolerance.Copyright © 2022 Elsevier Inc. All rights reserved.
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Background Graft versus host disease (GVHD) most often occurs 100-365 days after hematopoietic stem cell transplant (HSCT). Manifestations most often are dermatologic, hepatic or pulmonic, and are rarely cardiac. We present a unique case of GVHD inducing cardiogenic shock necessitating advanced heart failure therapies. Case This is a 34 year-old male with a history of acute lymphoblastic leukemia who completed chemoradiation and HSCT from an HLA perfect sibling in 1992. In May 2020, he presented with dyspnea for 6 weeks. An echocardiogram at that time showed an EF of 10% and severe biventricular dilatation. He was originally hospitalized at an outside institution for hypoxia where a left heart catheterization showed normal coronaries and goal directed therapy was initiated. After 2 negative COVID tests, he was discharged with a LifeVest. One month later, despite medication compliance, he returned in cardiogenic shock after his LifeVest was activated for ventricular tachycardia (VT). Decision-making He was started on inotropic therapy and an intra-aortic balloon pump (IABP) was placed 1:1 prior to transfer to our tertiary center. After support was started, a right heart catheterization showed a right atrial pressure of 13 mmHg, a wedge of 17, and a cardiac index of 2.6. His course was complicated by VT storm. Differentials for his non-ischemic cardiomyopathy (NICMO) included myocarditis (viral vs. giant cell) with a possible component of chemotherapy/radiation induced NICMO. Immediate AHFT work-up was started. He was unable to be weaned off his IABP or inotropic support. The decision was made to pursue emergent left ventricular assist device placement (LVAD) and achieve a definitive diagnosis with a core biopsy. Pathology resulted with myocyte hypertrophy, chronic inflammation with eosinophils concerning for chronic GVHD. Conclusion There have only been a handful of case reports describing cardiac manifestations of GVHD, and none with NICMO and cardiogenic shock requiring an LVAD. Despite this, suspicion should remain present for GVHD in HSCT patients regardless of time frame from oncologic therapies or specificity of HLA match when presenting in cardiogenic shock.Copyright © 2023 American College of Cardiology Foundation
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The diagnostic characteristics of autism spectrum disorder (ASD) includes challenges in social communication skills. Among different components of social communication, language, particularly vocabulary, must be supported early in children's development as language is shown to be associated with academic, social, cognitive, and adaptive skills and their development trajectory. Enhanced milieu teaching (EMT) is one of evidence-based, naturalistic interventions that are designed to support the vocabulary development of young children with ASD. EMT is often implemented by caregivers, therapists, or teachers;however, there is no study that evaluated the effectiveness of sibling-implemented EMT on the vocabulary use of children with ASD. With the rise of COVID-19, there is an increased duration of family interactions at home which led to the need for more structured and effective strategies for social interactions, especially for children with ASD. As siblings frequently engage in social interactions such as play, training older siblings to facilitate effective communication and play with their younger siblings with ASD could improve the language development of children with ASD as well as the siblings' social interactions. Adapting a multiple probe design, the study examined the effects of sibling-implemented EMT with virtual performance feedback for the siblings without ASD on the siblings' implementation fidelity of EMT and language outcomes and percentage of responses by children with ASD. Generalization with a novel material and maintenance over one week, two weeks, or one month was measured. Social validity questionnaires were completed by the siblings and the caregivers after the intervention. The findings provide implications for family-centered evidence-based practices, particularly through the use of virtual training for family members including the siblings of children with ASD. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
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Introduction: Medical professionals are known to experience high levels of stress because of their work since the current pandemic but they are rarely recognized as vulnerable and little attention is paid to their mental health. Objective : To detect burn out syndrome (BOS) among health workers in COVID19 centers and to summarise its potential risc factors. Method(s): we conducted a prospective and descriptive study, referring to Maslash Burnout Inventory, among a sample of medical professionals in COVID departments in Sfax from January to March 2020 by emailing a survey to 114 eligible participants. Result(s): Public COVID hospitals were the most frequent workplaces. Sixty three percent of people had high level of emotional exhaustion (EE), 57% had high level of depersonnalisation(DP) and 73% had low personal accomplishement(AP). These three components of MBI were correlated to female gender (P=0.001), single status (P=0.001), and the fear of contaminating siblings (P=0.001). Daily direct exposure to positive patient was noted in 79% of cases, and 42% of them had night shifts. High level of (DP) and low (AP) were correlated with night shifts at hospital (P=0.001). BOS was related to the non payment of the shifts (P<0.001), and the lack of free time (P=0.004). High levels of pressure from superiors is also correlated to low (AP) (P<0.001), while high level of (DP) was correlated to lack of appreciation from superiors (P<0.001) Conclusion(s): This study shows a high self-reported burnout level among medical professionals. It highlights the need for effective interventions to reduce BOS since the pandemic is still going on to this day.
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The repercussions of the Covid-19 pandemic on people's daily lives are immeasurable. effects on healthcare, business, the economy, and society;medical practitioners face difficulties in identifying and treating possible cases;patients with other health issues are often ignored;the healthcare system as a whole is strained. Having supportive relationships is crucial to a healthy mind. There are numerous threats to societal health during the COVID-19 pandemic. Elderly people have a lot of issues because they haven't had any of the pleasures of life since the COVID-19 pandemic. Many lost their eyesight during the pandemic, making even intimate human contact impossible. This left the elderly feeling entirely alone. The purpose of this research was to investigate the impact of the recent COVID-19 pandemic on the social well-being of the elderly by analyzing factors such as social contacts, neighborhood and neighborhood cohesion, material deprivation, main occupation, social isolation, societal institutions, and participation.Copyright © 2022 Wolters Kluwer Medknow Publications. All rights reserved.
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Objective: To evaluate the role of passive smoking (PS) on the incidence of wheezing and overall respiratory morbidity in infants born during the first peak of the coronavirus (COVID-19) pandemic, compared to infants born during the preceding year. Method(s): We used data collected in our recently published retrospective birth cohort study of 588 infants, 294 in each group, born in February-March 2020 (COVID-19 group) compared to a control group born in February-March 2019 (pre-COVID-19 group), at one year of age, using parental, telephone questionnaires. The primary outcome of wheezing/bronchodilator were similarly decreased, in PS and in non-PS (NPS)1. We further, conducted a post-hoc subgroup analysis of the respiratory outcomes: recurrent wheezing, emergency-room (ER) visits, pneumonia and admissions due to lower-respiratory-tract-infections (LRTI), to account for PS exposure. Atopy, daycare attendance, breastmilk, cesarean-section, siblings and gestational age were included in logistic regression models. Result(s): Demographic, perinatal, and atopic characteristics were similar between the groups. In NPS, secondary outcomes, including wheezing (OR 0.43, 95%CI 0.24-0.76), LRTI admissions (OR 0.1, 95%CI 0.01-0.89), recurrent wheezing (OR 0.28, 95%CI 0.11-0.7), ER admissions (OR 0.32, 95%CI 0.13-0.8) and pneumonia (OR 0.16, 95%CI 0.04-0.57) showed significant decreases during the COVID-19 first year pandemic. However, in PS, we did not observe these decreases in the respiratory morbidities. Conclusion(s): This study uncovers the overwhelming hazard of PS in abolishing the effect of the first year of COVID19 pandemic lock-downs, on infant's major respiratory morbidities.
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Background: Evidence of effective early childhood obesity prevention is scarce and mainly derived from face-to-face interventions. However, the COVID-19 pandemic drastically reduced face-to-face health programmes globally. This study assessed effectiveness of a telephone-based intervention in reducing obesity risk of young children. Method(s): We adapted a study protocol (developed before the pandemic) and conducted a pragmatic randomised controlled trial of 662 women with children aged 2 years (mean age 24.06 months [SD 0.69]) during March, 2019, and October, 2021, extending the original planned intervention of 12 months to 24 months. The adapted intervention comprised five telephone-based support sessions plus text messages over a 24-month period (at child ages 24-26 months, 28-30 months, 32-34 months, 36-38 months, and 42-44 months). The intervention group (n=331) received staged telephone plus SMS support regarding healthy eating, physical activity, and information about COVID-19. The control group (n=331) received four staged mail-outs on information not related to the obesity prevention intervention, such as toilet training, language development, and sibling relationships, as a retention strategy. The intervention effects on BMI (primary outcome) and eating habits (secondary outcome), and perceived co-benefits, were evaluated using surveys and qualitative telephone interviews at 12 months and 24 months after baseline (age 2 years). The trial is registered with the Australian Clinical Trial Registry, ACTRN12618001571268. Finding(s): Of 662 mothers, 537 (81%) completed the follow-up assessments at 3 years, and 491 (74%) completed the follow-up assessment at 4 years. Multiple imputation analysis showed no significant difference in mean BMI between the groups. Among low-income families (ie, annual household income <AU$80 000) at age 3 years, the intervention was significantly associated with a lower mean BMI (16.26 kg/m2 [SD 2.22]) in the intervention group than in the control group (16.84 kg/m2 [2.37];p=0.040), a difference of -0.59 (95% CI -1.15 to -0.03;p=0.040). Children in the intervention group were more likely not to eat in front of the television than the control group, with an adjusted odds ratio (aOR) of 2.00 (95% CI 1.33 to 2.99) at 3 years and an aOR of 2.50 (1.63 to 3.83) at 4 years. Qualitative interviews with 28 mothers revealed that the intervention increased their awareness, confidence, and motivation to implement healthy feeding practices, particularly for families from culturally diverse backgrounds (ie, speaking a language other than English at home). Interpretation(s): A telephone-based intervention was well received by the mothers who participated in the study. The intervention could reduce children's BMI from low-income families. Telephone-based support targeted at low-income families and families from culturally diverse backgrounds could reduce current inequalities in childhood obesity. Funding(s): The trial was funded under the NSW Health Translational Research Grant Scheme 2016 (number TRGS 200) and also by a National Health and Medical Research Council Partnership grant (number 1169823).Copyright © 2023 The Author(s). Published by Elsevier Ltd. This is an Open Access article under the CC BY 4.0 license
ABSTRACT
Using the example of a sequence from an analytical group, the regression of the group to the protomentality of a basic assumption group according to Bion is shown. As the leader of this group, I was exposed to the regressed group's expectations of a narcissistic and/or paranoid leader. The task of group analysis, on the other hand, consisted in the leader and group living through the sometimes torturous processes on the way to a group in which everyone "can be different without fear" (Adorno) in the analysis process. This can be seen as the essence of democratic culture. Finally, in the face of fears of annihilation, the foundation matrix of this group sequence shows the collective regression to the commodity fiction, which is understood as the impulsive motive of the current social unconscious and in reality as the driving force behind deadly climate catastrophe.
ABSTRACT
A preliminary evaluation of a multicomponent youth development program for siblings in foster care was conducted prior to and during the COVID-19 pandemic. Pretest posttest measures of youth well-being were collected from sixteen youth, caregivers, and caseworkers over a six-month period. Caregivers reported increased internalizing and externalizing behaviors, sibling relationship difficulties, prosocial behavior, and resilience during the study period. Youth reported reduced school engagement, increased resilience, and prosocial behavior. In-person sibling programming was associated with increased prosocial behavior. Virtual sibling programming was associated with lower hyperactivity, increased prosocial behavior, and increased emotional problems. Implications for research and practice are discussed.
ABSTRACT
The Children's NIHR Clinical Research Facility at Royal Manchester Children's Hospital has been involved in numerous early phase gene therapy trials for diseases such as GM1 gangliosidosis, Gaucher disease, MPSIIIA and MPSII. These trials have necessitated international recruitment which brings challenges for both site and families. In addition, we also actively recruited participants during the Covid-19 global pandemic, amplifying these challenges. A typical patient journey on one of these trials would involve being approached soon after diagnosis due to the rapid progression of these diseases and the need for early intervention. The family would then relocate to the UK with relatively short notice and commence an intensive period of screening involving a lot of extensive information for them to retain and invasive procedures for the patient. Some of these families will speak no English at all which is an additional barrier to managing the parental anxiety and expectations of the trial and its outcome. Once eligibility is confirmed the families are then faced with an extended stay in the UK without the support of their extended family/community. This impacts parent's employment and other siblings who may or may not be with them and who may also be affected by the same disease. Following administration of the gene therapy, participants then commence intensive follow up often associated with immunosuppressants. Close working with the local clinicians is essential for patient safety and trial integrity. Good engagement with families once they have returned to their home country is vital in obtaining continuing trial data and ensuring retention and compliance with attending future visits. Follow up visits are essential for safety and efficacy data for the progression of gene therapy trials. Travel restrictions brought about by the covid 19 pandemic exacerbated these challenges but with good communication and engagement we have mostly overcome them.