bluuebunny/crossref_metadata_2025_split huggingface dataset:
Parenting Challenges and Reasons for Not Availing Rehabilitation Services Among Families of Adolescents with Autism Spectrum Disorder: A Qualitative Study
Authors: Noori Fathima , Tiwari Shivani , Padickaparambil Sebastian , Pothiyil Dan Isaac 
Published: June 2022

Background: Autism spectrum disorder (ASD) is a lifelong condition requiring continued rehabilitation services. However, children with ASD who seek rehabilitation services tend to drop out once they enter puberty, because of varying reasons, some of which are unknown. This study intended to explore the reasons for not availing of rehabilitation services in families of adolescents with ASD and the parental challenges in taking care of adolescents with ASD. Method: The study followed a descriptive qualitative research design by conducting in-depth interviews with 12 primary caregivers of adolescents with ASD (10 to 19 years; mean age 16.3 years) who were not availing of any direct rehabilitation services. All interviews were conducted by telephone, and data obtained were subjected to thematic analysis. Results: The results showed two major themes, viz. reasons for discontinuing the rehabilitation services and parental challenges among primary caregivers of adolescents with ASD, and their corresponding subthemes. The reasons for discontinuation of rehabilitation included financial difficulties, difficulties in handling the child, and a lack of improvement in the child. A few of the parental challenges were disruptive behaviors and associated medical conditions of the child and difficulty in managing changes during adolescence. Conclusion: The study revealed several reasons as well as potential barriers to avail rehabilitation services in Indian families of adolescents with ASD. The data further unveil related parenting challenges specific to the Indian context. Further, implications for service providers and policymakers are discussed.
Barriers and facilitators related to self-management of shoulder pain: a systematic review and qualitative synthesis
Authors: O’Shea Aidan , Drennan Jonathan , Littlewood Chris , Slater Helen , Sim Julius , McVeigh Joseph G. 
Published: June 2022

Objective The objective of this review was to identify barriers and facilitators related to self-management from the perspectives of people with shoulder pain and clinicians involved in their care. Data sources CINAHL, MEDLINE, PsycINFO, SPORTDiscus, Embase, ProQuest Health, Web of Science, and Scopus were searched from inception to March 2022. Review methods A meta-aggregative approach to the synthesis of qualitative evidence was used. Two independent reviewers identified eligible articles, extracted the data, and conducted a critical appraisal. Two reviewers independently identified and developed categories, with validation by two further researchers. Categories were discussed among the wider research team and a comprehensive set of synthesized findings was derived. Results Twenty studies were included. From the perspective of patients, three synthesized findings were identified that influenced self-management: (1) support for self-management, including subthemes related to patient-centred support, knowledge, time, access to equipment, and patient digital literacy; (2) personal factors, including patient beliefs, patient expectations, patient motivation, pain, and therapeutic response; and (3) external factors, including influence of the clinician and therapeutic approach. From the perspective of clinicians, two synthesized findings were identified that influenced self-management: (1) support for self-management, including education, patient-centred support, patient empowerment, time, and clinician digital literacy; and (2) preferred management approach, including clinician beliefs, expectations, motivation, therapeutic approach, and therapeutic response. Conclusion The key barriers and facilitators were patient-centred support, patient beliefs, clinician beliefs, pain, and therapeutic response. Most of the included studies focused on exercise-based rehabilitation, and therefore might not fully represent barriers and facilitators to broader self-management.
Supporting Health and Medical Decision Making: Findings and Insights from Fuzzy-Trace Theory
Authors: Reyna Valerie F. , Edelson Sarah , Hayes Bridget , Garavito David 
Published: June 2022

Theory—understanding mental processes that drive decisions—is important to help patients and providers make decisions that reflect medical advances and personal values. Building on a 2008 review, we summarize current tenets of fuzzy-trace theory (FTT) in light of new evidence that provides insight regarding mental representations of options and how such representations connect to values and evoke emotions. We discuss implications for communicating risks, preventing risky behaviors, discouraging misinformation, and choosing appropriate treatments. Findings suggest that simple, fuzzy but meaningful gist representations of information often determine decisions. Within minutes of conversing with their doctor, reading a health-related web post, or processing other health information, patients rely on gist memories of that information rather than verbatim details. This fuzzy-processing preference explains puzzles and paradoxes in how patients (and sometimes providers) think about probabilities (e.g., “50-50” chance), outcomes of treatment (e.g., with antibiotics), experiences of pain, end-of-life decisions, memories for medication instructions, symptoms of concussion, and transmission of viruses (e.g., in AIDS and COVID-19). As examples, participation in clinical trials or seeking treatments with low probabilities of success (e.g., with antibiotics or at the end of life) may indicate a defensibly different categorical gist perspective on risk as opposed to simply misunderstanding probabilities or failing to make prescribed tradeoffs. Thus, FTT explains why people avoid precise tradeoffs despite computing them. Facilitating gist representations of information offers an alternative approach that goes beyond providing uninterpreted “neutral” facts versus persuading or shifting the balance between fast versus slow thinking (or emotion vs. cognition). In contrast to either taking mental shortcuts or deliberating about details, gist processing facilitates application of advanced knowledge and deeply held values to choices. Highlights Fuzzy-trace theory (FTT) supports practical approaches to improving health and medicine. FTT differs in important respects from other theories of decision making, which has implications for how to help patients, providers, and health communicators. Gist mental representations emphasize categorical distinctions, reflect understanding in context, and help cue values relevant to health and patient care. Understanding the science behind theory is crucial for evidence-based medicine.
Predictive Role of Blood Cellular Indices and Their Relationship with Endogenous Glycosaminoglycans as Determinants of Inflammatory Biomarkers in Pulmonary Embolism
Authors: Kantarcioglu Bulent , Darki Amir , Siddiqui Fakiha , Krupa Emily , Vural Mehmet , Kacmaz Murat , Hoppensteadt Debra , Iqbal Omer , Jeske Walter , Walenga Jeanine , Adiguzel Cafer , Fareed Jawed 
Published: June 2022

Introduction In this study, we profiled the levels of blood cellular indices, endogenous glycosaminoglycans (GAGs) and inflammatory biomarkers in a cohort comprised of pulmonary embolism (PE) patients, to determine their inter-relationships. Identification of this relationship may provide insight to the complex pathophysiology of PE and the predictive role of blood cellular indices in acute PE patients. Materials and Methods Plasma samples from PE patients and healthy controls were analyzed for thrombo-inflammatory biomarkers (IL-2, IL-4, IL-6, IL-8, IL-10, VEGF, IFN-ɣ, TNF-α, IL-1α, IL-1β, MCP-1, EGF, D-dimer, CRP and MMP-9) using biochip array and ELISA methods. The endogenous GAG levels were quantified using a fluorescence quenching method. The data regarding the blood cellular indices were collected through the review of patient medical records and analyzed to demonstrate their relationship. Results The levels of inflammatory biomarkers and endogenous GAGs were elevated in acute PE patients compared to controls ( P < .05). Most of the blood cellular indices have shown significant differences in acute PE patients compared to controls ( P < .05). The levels of inflammatory biomarkers, endogenous GAGs and the blood cellular indices have shown significant associations in correlation and multivariable analysis. While NLR, PLR and SII were significantly predicting the 30-day mortality, PNR, ELR and EMR were not sufficient to predict 30-day mortality in acute PE. Conclusion Our results show that the increased thrombo-inflammatory response is associated with the release of GAGs and the changes in blood cellular indices. The predictive role of the blood cellular indices for mortality is dependent on their relationship with the inflammatory response.
Inferior Vena Cava—Balloon Occlusion and Its Effect on the Myocardium During Endograft Deployment in the Arch
Authors: Karelis Angelos , Dias Nuno V. , Holmström Anders , Kölbel Tilo , Sonesson Björn 
Published: June 2022

Purpose: To evaluate the impact of cava balloon occlusion on the myocardium during endovascular repair of thoracic aortic pathologies. Material and methods: A prospective observational cohort study of 21 patients who underwent endovascular repair of aortic arch and thoracic aorta in a single tertiary referral center with use of inferior vena cava (IVC) balloon occlusion as a method of intraoperative cardiac output reduction. Pre-, intra-, and postoperative measurements of heart rate, blood pressure, stroke volume index, and central venous oxygen saturation were noted. High-sensitive serum troponin levels were also analyzed according to a pre-established protocol. Endpoints were cardiac troponin T levels after induced hypotension and left ventricular ejection fraction during follow-up. Secondary endpoints were procedure technical success and overall survival. Results: Twenty-one patients (18 male, median age 69, (62-75, IQR)) enrolled in the study between May 2015 and January 2019. Indication for endovascular treatment was an aortic arch aneurysm (n=10), descending aortic aneurysm (n=8), lusorian artery aneurysm (n=2), and thoracoabdominal aortic aneurysm (n=1). Median time to reach half mean arterial pressure was 60 seconds while median recovery time of blood pressure was 135 seconds. In 5 (24%) cases, we observed a > 50% change of Troponin T on the reference level. Technical success was achieved in all cases. Two (10%) patients developed new and persistent atrial fibrillation and 1 (5%) suffered a peri-operative ST-elevation myocardial infarction. Conclusion: The use of IVC balloon occlusion is a feasible technique for cardiac output reduction during endovascular repair of thoracic aortic pathologies. One fourth of the patients develop significant troponin leakage but the significance of the finding needs further studies.
The Impact of the Proctor Assistance for a Safe Learning Curve in the Development of a Complex Aortic Endovascular Program
Authors: Gouveia e Melo Ryan , Fernandes e Fernandes Ruy , Salvado Margarida , Duarte António , Lopes Alice , Verhoeven Eric , Fernandes e Fernandes José , Mendes Pedro Luís 
Published: June 2022

Introduction: Initiating an endovascular aortic program for treatment of complex aortic aneurysms with fenestrated and branched grafts (FB-EVAR) is challenging. Using a Proctor is one option for training and development of the team. However, this approach has not been formally analyzed. The aim of this study was to analyze the learning curve and the effect of the Proctor regarding safety and effectiveness in FB-EVAR. Methods: A single-center retrospective cohort study was performed, including all consecutive elective patients submitted to FB-EVAR (including both thoraco-abdominal-TAAA and complex abdominal aortic aneurysms-C-AAA) from 2013 to 2021. Patients were divided into 2 groups, the first operated with the Proctor present and the second without. Primary outcomes were 30-day mortality (safety) and technical and procedure success (efficacy). Secondary outcomes included treatment performance (procedure time, blood loss, contrast, and radiation use), re-interventions, aneurysm shrinking, target vessel patency, 30-day mortality, aneurysm-related mortality, and overall mortality. Results: Overall, 105 patients were included in the study, 35 operated with Proctor and 70 operated without. The first 20 patients were operated always with the Proctor, and the remaining were operated with the Proctor selectively. Mean age was 71.8 (±7.3) years and 95 patients were male (90.5%). Overall, 62 (65%) patients had C-AAA or extent IV TAAAs and 43 (35%) had extensive TAAAs. There were no significant differences regarding 30-day mortality (Log Rank=0.99), technical success (p=0.4), or procedure success (p=0.8). Mean surgical time was longer in the non-Proctor group (p=0.005), as well as significant intra-operative blood loss (p=0.042). Contrast use (p=0.5) and radiation (p=0.53) were non-significantly different between groups. There were no significant differences regarding length of stay (p=0.4), major adverse events (p=0.6), target vessel patency (Log Rank=0.97), early (p=0.7) and late endoleaks (0.7), aneurysm shrinking (p=0.6), re-interventions (p=0.2), and overall mortality (Log Rank=0.87). Conclusion: In our experience, the use of a Proctor to start and accompany our complex endovascular aortic program for FB-EVAR was both safe and effective and may serve as a template by other countries and centers that aim to developing their programs.
Anxiety Severity and Influencing Factors in Day Surgery Patients or Relatives in Covid-19 Normalized Prevention Phase
Authors: Teng Zeng , Lin Rongruo , Liu Jing , Yin Yu , Dai Yan , Huang Mingjun 
Published: June 2022

Background As the 2019 Coronavirus Disease (COVID-19) repeated, the prevention and treatment will be normalized in a period. “Large number of patients” and “ Turnover quickly” of the day surgery ward greatly increased the difficulty of policy formulation and implementation. The normalization also had a huge negative psychological impact on patients/family members. This study aims to introduce effective epidemic prevention and control measures in day surgery wards, and to clarify the influencing factors of anxiety and subjective discomfort of patients and their families during the normalization of COVID-19. Methods To prepare for normalization of epidemic, research discuss improvements in the management of staff, environment, process. A total of 148 patients admitted to West China Hospital from December 2021 to March 2022 and their relatives were asked to complete a questionnaire effectively. Using the Self-rating Anxiety Scale, Social Support Rating Scale and Subjective Units of Distress scales to analyze anxiety and its risk factors. Results Under normalized control measures, no staff was infected. The subjective discomfort score was higher in people with lower body mass index (BMI). Young and high social support score were risk factors for anxiety (P < .05), and social support was positively correlated with anxiety. Conclusion The normalization of epidemic is an inevitable trend in a period. A stable and safe medical environment needs to fully eliminate the policy defects, to fit the people and focus on mental health of the people. For patients/family members, who are younger,a lower BMI and higher social support should be attention more.
Nurses’ strategies to provide emotional and practical support to the mothers of preterm infants in the neonatal intensive care unit: A systematic review and meta-analysis
Authors: Maleki Maryam , Mardani Abbas , Harding Celia , Basirinezhad Mohammad Hasan , Vaismoradi Mojtaba 
Published: June 2022

Aim: To synthesize and integrate current international knowledge regarding nursing strategies for the provision of emotional and practical support to the mothers of preterm infants in the neonatal intensive care unit. Methods: A systematic review and meta-analysis was undertaken. Four English-language databases including EMBASE, PubMed (including MEDLINE), Scopus, and Web of Science were searched from January 2010 to October 2021. Original quantitative studies that were written in English and focused on nursing strategies for the provision of emotional and practical support to the mothers of preterm infants in the neonatal intensive care unit were included. Eligibility assessment, data extraction, and methodological quality appraisal were conducted independently by the review authors. A narrative synthesis of the review results and a meta-analysis were performed. Results: Twenty studies that were published from 2010 to 2021 were included in the review. Three categories concerning the review aims were identified: ‘nursing strategies related to mothers’ emotions and infant-mother attachment’, ‘nursing strategies related to mothers’ empowerment’, and ‘nursing strategies related to mothers’ participation in care process and support’. Eight interventional studies that reported mothers’ stress as the study outcome were entered into the meta-analysis. Interventions consisted of the educational programme, spiritual care, telenursing, parent support programme, skin-to-skin care, and guided family centred care. Significantly lower maternal stress was found in the intervention group compared with that of the control group ( g: −1.06; 95% confidence interval: −1.64, −0.49; Z = 3.62, p < 0.001). Conclusion: This review identified and highlighted key nursing strategies used to provide emotional and practical support to the mothers of preterm infants in the neonatal intensive care unit. They included family centred care, skin-to-skin care, parent support and education programmes, interpersonal psychotherapy, spiritual care, newborn individualized developmental care and assessment programme, and telenursing.
Punctual and kinetic MRD analysis from the Fondazione Italiana Linfomi MCL0208 phase 3 trial in mantle cell lymphoma
Authors: Ferrero Simone , Grimaldi Daniele , Genuardi Elisa , Drandi Daniela , Zaccaria Gian Maria , Alessandria Beatrice , Ghislieri Marco , Ferrante Martina , Evangelista Andrea , Mantoan Barbara , De Luca Gabriele , Stefani Piero Maria , Benedetti Fabio , Casaroli Ivana , Zanni Manuela , Castellino Claudia , Pavone Vincenzo , Petrini Mario , Re Francesca , Hohaus Stefan , Musuraca Gerardo , Cascavilla Nicola , Ghiggi Chiara , Liberati Anna Marina , Cortelazzo Sergio , Ladetto Marco 
Published: June 2022

Abstract
Minimal residual disease (MRD) analysis is a known predictive tool in mantle cell lymphoma (MCL). We describe MRD results from the Fondazione Italiana Linfomi phase 3 MCL0208 prospective clinical trial assessing lenalidomide (LEN) maintenance vs observation after autologous stem cell transplantation (ASCT) in the first prospective comprehensive analysis of different techniques, molecular markers, and tissues (peripheral blood [PB] and bone marrow [BM]), taken at well-defined time points. Among the 300 patients enrolled, a molecular marker was identified in 250 (83%), allowing us to analyze 234 patients and 4351 analytical findings from 10 time points. ASCT induced high rates of molecular remission (91% in PB and 83% in BM, by quantitative real-time polymerase chain reaction [RQ-PCR]). Nevertheless, the number of patients with persistent clinical and molecular remission decreased over time in both arms (up to 30% after 36 months). MRD predicted early progression and long-term outcome, particularly from 6 months after ASCT (6-month time to progression [TTP] hazard ratio [HR], 3.83; P &lt; .001). In single-timepoint analysis, BM outperformed PB, and RQ-PCR was more reliable, while nested PCR appeared applicable to a larger number of patients (234 vs 176). To improve MRD performance, we developed a time-varying kinetic model based on regularly updated MRD results and the MIPI (Mantle Cell Lymphoma International Prognostic Index), showing an area under the ROC (Receiver Operating Characteristic) curve (AUROC) of up to 0.87 using BM. Most notably, PB reached an AUROC of up to 0.81; with kinetic analysis, it was comparable to BM in performance. MRD is a powerful predictor over the entire natural history of MCL and is suitable for models with a continuous adaptation of patient risk. The study can be found in EudraCT N. 2009-012807-25 (https://eudract.ema.europa.eu/).
Liver-to-lung microembolic NETs promote gasdermin D–dependent inflammatory lung injury in sickle cell disease
Authors: Vats Ravi , Kaminski Tomasz W. , Brzoska Tomasz , Leech John A. , Tutuncuoglu Egemen , Katoch Omika , Jonassaint Jude , Tejero Jesus , Novelli Enrico M. , Pradhan-Sundd Tirthadipa , Gladwin Mark T. , Sundd Prithu 
Published: June 2022

AbstractAcute lung injury, referred to as the acute chest syndrome, is a major cause of morbidity and mortality in patients with sickle cell disease (SCD), which often occurs in the setting of a vaso-occlusive painful crisis. P-selectin antibody therapy reduces hospitalization of patients with SCD by ∼50%, suggesting that an unknown P-selectin–independent mechanism promotes remaining vaso-occlusive events. In patients with SCD, intraerythrocytic polymerization of mutant hemoglobin promotes ischemia-reperfusion injury and hemolysis, which leads to the development of sterile inflammation. Using intravital microscopy in transgenic, humanized mice with SCD and in vitro studies with blood from patients with SCD, we reveal for the first time that the sterile inflammatory milieu in SCD promotes caspase-4/11–dependent activation of neutrophil–gasdermin D (GSDMD), which triggers P-selectin–independent shedding of neutrophil extracellular traps (NETs) in the liver. Remarkably, these NETs travel intravascularly from liver to lung, where they promote neutrophil-platelet aggregation and the development of acute lung injury. This study introduces a novel paradigm that liver-to-lung embolic translocation of NETs promotes pulmonary vascular vaso-occlusion and identifies a new GSDMD-mediated, P-selectin–independent mechanism of lung injury in SCD.
Telemedicine home CPAP titration and follow-up in the COVID-19 scenario
Authors: Bordas-Martinez Jaume , Salord Neus , Fontanilles Eva , Prado Eliseo , Calvo María , Carmezim João , Santos Salud , Monasterio Carmen 
Published: June 2022

IntroductionContinuous positive airway pressure (CPAP) titration was dramatically affected by the coronavirus disease 2019 (COVID-19) pandemic due to increased biological risk. This study aimed to compare successful CPAP adaptation and compliance with home telemedicine CPAP titration with the usual method based on face-to-face visits.MethodologyA prospective cohort using telemedicine home CPAP titration and follow-up during the COVID-19 pandemic (TC) was compared with a retrospective cohort receiving face-to-face pre-pandemic home titration (RC). The TC included a subgroup with a smartphone application (TC-APP). Successful CPAP adaptation and compliance at 1 month of follow-up were the main endpoints, while patient satisfaction and costs were secondary endpoints.Results210 consecutive patients were evaluated (80 RC and 130 TC). 36 patients were in the TC-APP subgroup. CPAP titration was successful in 90% in RCversus95% in TC and 100% in TC-APP. No compliance differences between groups were found at 1  month (4.79 h·night−1RC, 4.33  h·night−1TC and 4.59 h·night−1TC-APP). Mean±sdpatient satisfaction out of 10 was 7.69±2.05 in RCversus9.02±0.64 in TC (p<0.001). 64% of the TC-APP subgroup reported that their telemedicine strategy influenced an increase in CPAP use (p=0.011). CPAP adaptation with follow-up had an estimated direct staff cost per patient of EUR 19.61±8.61 in TC with no smartphone application usedversusEUR 23.79±9.94 in TC-APP (p=0.048).ConclusionsTelemedicine in CPAP titration and early follow-up is equivalent to the usual care in terms of successful adaptation and compliance, while achieving greater patient satisfaction.