keyword
https://read.qxmd.com/read/38444574/patient-and-family-experiences-of-lysosomal-storage-diseases-in-canada-a-qualitative-interview-study
#21
JOURNAL ARTICLE
Nahya Awada, Martin Holcik
Canadian patients and families affected by rare genetic lysosomal storage diseases (LSDs) suffer from numerous challenges related to disease management, including issues navigating healthcare and social support services, access to orphan drugs, and intensive treatment regimens. These challenges significantly impact people's quality of life, yet they remain obscure and have not been the subject of comprehensive analysis. Thus, we conducted qualitative interviews with Canadian patients and caregivers living with LSDs to advance current understanding of their experiences with rare-disease (RD) management and health systems navigation to support patient-focused RD policies and programs and improve the health outcomes of the 2...
March 2024: JIMD Reports
https://read.qxmd.com/read/38441892/pregnancy-related-issues-from-the-perspective-of-patients-with-inflammatory-rheumatic-diseases-results-from-a-survey-of-the-members-of-the-national-association-for-inflammatory-rheumatic-diseases
#22
JOURNAL ARTICLE
Atsuko Murashima, Kayoko Kaneko, Hiroshi Oguro, Yukiko Mori, Mikako Goto, Shuko Mishima, Tatsuhiko Anzai, Kunihiko Takahashi
OBJECTIVES: This study aimed to clarify the issues related to pregnancy in patients with inflammatory rheumatic diseases (RDs) and to provide useful information for developing medical services from patients' perspectives. METHODS: A survey involving approximately 5,000 members of the Patients Association for Collagen Vascular Diseases Japan was conducted using a questionnaire that was sent and returned by mail. The questionnaire items included age at the time of the survey, types of RDs, association of RDs with pregnancy/childbirth outcomes, and pregnancy-related supports and hindrances...
March 5, 2024: Modern Rheumatology
https://read.qxmd.com/read/38441525/nasal-intermittent-positive-pressure-ventilation-during-less-invasive-surfactant-administration-in-preterm-infants-an-open-label-randomized-controlled-study
#23
JOURNAL ARTICLE
Carlo Dani, Marcello Napolitano, Ciro Barone, Angelo Manna, Gabriella Nigro, Gianfranco Scarpelli, Elvira Bonanno, Sara Gatto, Francesco Cavigioli, Carlo Forcellini, Enrico Petoello, Renzo Beghini, Martina Ciarcià, Monica Fusco, Fabio Mosca, Anna Lavizzari, Eloisa Gitto, Letteria Barbuscia, Pasqua Betta, Carmine Mattia, Luigi Corvaglia, Stefania Vedovato, Giovanni Vento, Gianfranco Maffei, Raffaele Falsaperla, Paola Lago, Luca Boni, Gianluca Lista
INTRODUCTION: Approximately half of very preterm infants with respiratory distress syndrome (RDS) fail treatment with nasal continuous positive airway pressure (NCPAP) and need mechanical ventilation (MV). OBJECTIVES: Our aim with this study was to evaluate if nasal intermittent positive pressure ventilation (NIPPV) during less invasive surfactant treatment (LISA) can improve respiratory outcome compared with NCPAP. MATERIALS AND METHODS: We carried out an open-label randomized controlled trial at tertiary neonatal intensive care units in which infants with RDS born at 25+0 -31+6 weeks of gestation between December 1, 2020 and October 31, 2022 were supported with NCPAP before and after surfactant administration and received NIPPV or NCPAP during LISA...
January 22, 2024: Pediatric Pulmonology
https://read.qxmd.com/read/38441387/measurement-of-lung-oxygenation-by-near-infrared-spectroscopy-in-preterm-infants-with-bronchopulmonary-dysplasia
#24
JOURNAL ARTICLE
Carlo Dani, Francesca Miselli, Tommaso Zini, Davide Scarponi, Michele Luzzati, Davide Sarcina, Monica Fusco, Francesco Dianori, Alberto Berardi
INTRODUCTION: It has recently been reported that it is possible to monitor lung oxygenation (rSO2 L) by near-infrared spectroscopy (NIRS) in preterm infants with respiratory distress syndrome (RDS). Thus, our aim was to assess the possibility of monitoring rSO2 L in infants with evolving and established bronchopulmonary dysplasia (BPD) and to evaluate if rSO2 L correlates with BPD severity and other oxygenation indices. METHODS: We studied 40 preterm infants with gestational age ≤30 weeks at risk for BPD...
March 5, 2024: Pediatric Pulmonology
https://read.qxmd.com/read/38438399/a-register-and-questionnaire-study-of-long-term-general-health-symptoms-following-sars-cov-2-vaccination-in-denmark
#25
JOURNAL ARTICLE
Elisabeth O'Regan, Ingrid Bech Svalgaard, Anna Irene Vedel Sørensen, Lampros Spiliopoulos, Peter Bager, Nete Munk Nielsen, Jørgen Vinsløv Hansen, Anders Koch, Inger Kristine Meder, Poul Videbech, Steen Ethelberg, Anders Hviid
Many individuals who refuse COVID-19 vaccination have concerns about long-term side effects. Here, we report findings on self-reported symptoms from a Danish survey- and register study. The study included 34,868 vaccinated primary course recipients, 95.8% of whom received mRNA vaccines, and 1,568 unvaccinated individuals. Participants had no known history of SARS-CoV-2 infection. Using g-computation on logistic regression, risk differences (RDs) for symptoms between vaccinated and unvaccinated persons were estimated with adjustments for possible confounders...
March 4, 2024: NPJ Vaccines
https://read.qxmd.com/read/38433603/genetic-approaches-to-study-rheumatic-diseases-and-its-implications-in-clinical-practice
#26
REVIEW
Dorota Rowczenio, Ivona Aksentijevich
Rare and complex rheumatic diseases (RDs) present with immense clinical variability inherent to all immunological diseases. In addition to systemic and organ-specific inflammation, patients may display features of immunodeficiency or allergy, and as such, they may represent major diagnostic and therapeutic challenges. The person's genetic architecture has been a well-established risk factor for RDs, albeit to variable degrees. Patients with early-onset diseases and/or positive family history have a strong genetic component, while patients with late-onset RDs demonstrate a more complex interplay of genetic and environmental risk factors...
March 4, 2024: Arthritis & Rheumatology
https://read.qxmd.com/read/38430682/improved-neonatal-outcomes-in-pregnancies-with-coexisting-gestational-diabetes-and-preeclampsia-in-normal-birthweight-neonates-insights-from-a-retrospective-cohort-study
#27
JOURNAL ARTICLE
Liat Mor, Liliya Tamayev, Barak Laxer, Ella Toledano, Letizia Schreiber, Yael Ganor Paz, Giulia Barda, Michal Levy, Eran Weiner
INTRODUCTION: We aimed to assess neonatal and maternal outcomes in appropriate-for-gestational-weight (AGA) neonates of mothers with both gestational diabetes mellitus (GDM) and preeclampsia (PET). METHODS: Medical records of women diagnosed with GDM or PET were reviewed. Women with AGA neonates were divided into three groups- GDM, PET, and GDM + PET and maternal neonatal and placental outcomes were compared. The primary outcome was a composite of adverse neonatal outcomes, including intensive care unit admission (NICU), neurological morbidity, hypoglycemia, ventilation, respiratory distress syndrome (RDS), phototherapy, sepsis, blood transfusion, and neonatal death...
February 27, 2024: Placenta
https://read.qxmd.com/read/38423787/single-time-point-renal-dosimetry-using-nonlinear-mixed-effects-modeling-and-population-based-model-selection-in-177-lu-lu-psma-617-therapy
#28
JOURNAL ARTICLE
Deni Hardiansyah, Elham Yousefzadeh-Nowshahr, Felix Kind, Ambros J Beer, Juri Ruf, Gerhard Glatting, Michael Mix
The aim of this study was to investigate the accuracy of single-time-point (STP) renal dosimetry imaging using SPECT/CT data, a nonlinear mixed-effects (NLME) model, and a population-based model selection (PBMS) in a large population for 177 Lu-labeled prostate-specific membrane antigen therapy. Methods: Biokinetic data (mean ± SD) of [177 Lu]Lu-PSMA-617 in kidneys at time points 1 (1.8 ± 0.8 h), 2 (18.7 ± 0.9 h), 3 (42.6 ± 1.0 h), 4 (66...
February 29, 2024: Journal of Nuclear Medicine
https://read.qxmd.com/read/38418993/factors-influencing-necrotizing-enterocolitis-in-premature-infants-in-china-a-systematic-review-and-meta-analysis
#29
JOURNAL ARTICLE
Shuliang Zhao, Huimin Jiang, Yiqun Miao, Wenwen Liu, Yanan Li, Hui Liu, Aihua Wang, Xinghui Cui, Yuanyuan Zhang
BACKGROUND: Necrotizing enterocolitis (NEC) is a multifactorial gastrointestinal disease with high morbidity and mortality among premature infants. However, studies with large samples on the factors of NEC in China have not been reported. This meta-analysis aims to systematically review the literature to explore the influencing factors of necrotizing enterocolitis in premature infants in China and provide a reference for the prevention of NEC. METHODS: PubMed, Embase, Web of Science, Cochrane Library, China National Knowledge Infrastructure (CNKI), China Biomedical Literature Database (CBM), Wanfang and VIP databases were systematically searched from inception to February 2023...
February 29, 2024: BMC Pediatrics
https://read.qxmd.com/read/38417104/screening-efficient-c-n-coupling-catalysts-for-electrosynthesis-of-acetamide-and-output-ammonia-through-a-cascade-strategy-of-electrochemical-co-2-and-n-2-reduction-using-cu-based-nitrogen-carbon-nanosheets
#30
JOURNAL ARTICLE
Yi Xiao, Chen Shen, Chen Sun, Yibing Yang, Xiao Yang, Lili Han
Due to the limitation of the high-value-added products obtained from electrocatalytic CO2 reduction within an acid environment, introducing additional elements can expand the diversity of the products obtained during the CO2 reduction reaction (CO2 RR) and nitrogen reduction reaction (NRR). Thus, coelectroreduction of CO2 and N2 is a new strategy for producing acetamide (CH3 CONH2 ) via both C-C and C-N bond coupling using Cu-based nitrogen-carbon nanosheets. CO2 can reduce to CO, and a key ketene (*C═C═O) can be generated from *CO*CO dimerization; this ketene is postulated as an intermediate in the formation of acetamide...
February 28, 2024: ACS Applied Materials & Interfaces
https://read.qxmd.com/read/38414042/problematic-alcohol-use-among-gay-bisexual-and-other-men-who-have-sex-with-men-in-canada-the-role-of-proximal-stressors-and-anxiety
#31
JOURNAL ARTICLE
Adhm Zahran, Sarah S Dermody, Graham W Berlin, Paolo A Palma, Shayna Skakoon-Sparling, Syed W Noor, Nathan J Lachowsky, Daniel Grace, Joseph Cox, David M Moore, Gilles Lambert, Terri H Zhang, Milada Dvorakova, Jody Jollimore, Allan Lal, Trevor A Hart
BACKGROUND: Gay, bisexual, and other men who have sex with men (GBM) report high rates of problematic alcohol use, anxiety, and depression. This may, in part, be due to stressors related to their sexual identity (i.e., minority stressors). However, few studies have examined both distal and proximal stressors, as well as the specific psychological mechanisms by which these stressors may be related to alcohol use outcomes, in a representative sample of GBM. We explored the relationship between distal and proximal stressors and alcohol use outcomes, as well as the role of anxiety and depression as potential mediators of these relationships...
February 28, 2024: Substance Abuse Treatment, Prevention, and Policy
https://read.qxmd.com/read/38412261/standardizing-to-specific-target-populations-in-distributed-networks-and-multi-site-pharmacoepidemiologic-studies
#32
JOURNAL ARTICLE
Michael Webster-Clark, Kristian B Filion, Robert W Platt
Distributed networks and other multi-site studies assess drug safety and effectiveness in diverse populations by pooling information. Targeting groups of clinical or policy interest (including specific sites or site combinations) and applying weights based on effect measure modifiers (EMMs) prior to pooling estimates within multi-site studies may increase interpretability and improve precision. We simulated a four-site study, standardized each site using inverse odds weights (IOW) to resemble the three smallest sites or the smallest site, estimated IOW-weighted RDs, and combined estimates with inverse variance weights (IVW)...
February 27, 2024: American Journal of Epidemiology
https://read.qxmd.com/read/38410273/a-new-approach-to-snack-production-sourdough-corn-flakes-with-low-glycemic-index
#33
JOURNAL ARTICLE
Hümeyra Çetin-Babaoğlu
In this study, sourdough powder was used as a natural additive to enhance functional properties and reduce glycemic index of corn flakes. Lactobacillus fermentum , Lactococcus lactis , previously isolated from sourdough samples, and Saccharomyces cerevisiae were used as starter cultures to produce sourdough powder from wheat flour. To produce corn flakes sourdough powder was replaced by maize flour in amounts of 15 and 30%, while the control sample contained no sourdough powder. The total phenolic content, 2,2-di-phenyl-2-picryl-hydrazyl (DPPH) radical scavenging activity and ferric reducing antioxidant power (FRAP) of the samples were 421...
April 2024: Journal of Food Science and Technology
https://read.qxmd.com/read/38405583/improving-u-net-network-for-semantic-segmentation-of-corns-and-weeds-during-corn-seedling-stage-in-field
#34
JOURNAL ARTICLE
Jiapeng Cui, Feng Tan, Nan Bai, Yaping Fu
INTRODUCTION: Weeds are one of the main factors affecting crop growth, making weed control a pressing global problem. In recent years, interest in intelligent mechanical weed-control equipment has been growing. METHODS: We propose a semantic segmentation network, RDS_Unet, based on corn seedling fields built upon an improved U-net network. This network accurately recognizes weeds even under complex environmental conditions, facilitating the use of mechanical weeding equipment for reducing weed density...
2024: Frontiers in Plant Science
https://read.qxmd.com/read/38397720/the-diagnostic-pathway-experiences-of-people-living-with-rare-dementia-and-their-family-caregivers-a-cross-sectional-mixed-methods-study-using-qualitative-and-economic-analyses
#35
JOURNAL ARTICLE
Ian Davies-Abbott, Bethany F Anthony, Kiara Jackson, Gill Windle, Rhiannon Tudor Edwards
The pathways for receiving a diagnosis of a rare type of dementia are poorly understood. Diagnostic challenges decrease access to relevant health promotion activities and post-diagnostic support. This study was focused on pathways experienced by people affected by rare dementia in Wales, United Kingdom (UK), considering the practical, emotional, and economic consequences. Semi-structured interviews were completed with 10 people affected by rare dementia across Wales, UK (nine family caregivers and one person living with rare dementia)...
February 16, 2024: International Journal of Environmental Research and Public Health
https://read.qxmd.com/read/38397269/a-survey-of-the-union-of-european-neonatal-and-perinatal-societies-on-neonatal-respiratory-care-in-neonatal-intensive-care-units
#36
JOURNAL ARTICLE
Corrado Moretti, Camilla Gizzi, Luigi Gagliardi, Flavia Petrillo, Maria Luisa Ventura, Daniele Trevisanuto, Gianluca Lista, Raffaele L Dellacà, Artur Beke, Giuseppe Buonocore, Antonia Charitou, Manuela Cucerea, Boris Filipović-Grčić, Nelly Georgieva Jeckova, Esin Koç, Joana Saldanha, Manuel Sanchez-Luna, Dalia Stoniene, Heili Varendi, Giulia Vertecchi, Fabio Mosca
(1) Background: Our survey aimed to gather information on respiratory care in Neonatal Intensive Care Units (NICUs) in the European and Mediterranean region. (2) Methods: Cross-sectional electronic survey. An 89-item questionnaire focusing on the current modes, devices, and strategies employed in neonatal units in the domain of respiratory care was sent to directors/heads of 528 NICUs. The adherence to the "European consensus guidelines on the management of respiratory distress syndrome" was assessed for comparison...
January 26, 2024: Children
https://read.qxmd.com/read/38395804/association-between-in-country-migration-and-hiv-infection-among-transgender-women-from-northeastern-brazil-a-respondent-driven-sampling-survey
#37
JOURNAL ARTICLE
Beo Oliveira Leite, Laio Magno, Francisco Inacio Bastos, Ines Dourado
BACKGROUND: Migration is common among transgender women (TGW), often driven by the desire to escape stigma, find acceptance, establish new connections, access body modifications, or enter new avenues of sex work. Given the heightened mobility of TGW, they are mostly vulnerable to human immunodeficiency virus (HIV) due to migration. This study aimed to evaluate the association between in-country migration and HIV infection among TGW in Northeast Brazil. METHODS: The DIVAS was a cross-sectional, multicity study investigating risk behaviors and sexually transmitted infections (STI) among TGW in 2016-2017...
February 23, 2024: BMC Public Health
https://read.qxmd.com/read/38393385/the-effect-of-selective-dorsal-rhizotomy-on-the-improvement-of-the-quality-of-life-of-children-with-stage-gmfcs-iv-and-v-cerebral-palsy-pain-nursing-positioning-and-dressing
#38
REVIEW
Jeanne Meyer-Sauvage, Manel Krouma, Caroline Klovan, Philippe Bardot, Marie-Ange Rohon, Jean-Michel Viton, Christophe Boulay, Didier Scavarda
AIM: The objective of this study is to evaluate the benefit of selective dorsal rhizotomy on the quality of life of patients with severe spasticity with significant impairment of gross motor functions (GMFCS stages IV and V) according to 4 items: pain, nursing care, positioning, and dressing. MATERIALS AND METHODS: We conducted a monocentric retrospective cohort study including patients who underwent selective dorsal rhizotomy between March 2008 and May 2022 at the University Hospital of Marseille...
February 23, 2024: Child's Nervous System: ChNS: Official Journal of the International Society for Pediatric Neurosurgery
https://read.qxmd.com/read/38388234/ecfs-standards-of-care-on-cftr-related-disorders-towards-a-comprehensive-program-for-affected-individuals
#39
JOURNAL ARTICLE
E De Wachter, K De Boeck, I Sermet-Gaudelus, N J Simmonds, A Munck, L Naehrlich, J Barben, C Boyd, S J Veen, S B Carr, I Fajac, P M Farrell, E Girodon, T Gonska, W W Grody, M Jain, A Jung, E Kerem, K S Raraigh, S van Koningsbruggen-Rietschel, M D Waller, K W Southern, C Castellani
After three publications defining an updated guidance on the diagnostic criteria for people with cystic fibrosis transmembrane conductance regulator (CFTR)-related disorders (pwCFTR-RDs), establishing its relationship to CFTR-dysfunction and describing the individual disorders, this fourth and last paper in the series addresses some critical challenges facing health care providers and pwCFTR-RD. Topics included are: 1) benefits and obstacles to collect data from pwCFTR-RD are discussed, together with the opportunity to integrate them into established CF-registries; 2) the potential of infants designated CRMS/CFSPID to develop a CFTR-RD and how to communicate this information; 3) a description of the challenges in genetic counseling, with particular regard to phenotypic variability, unknown long-term evolution, CFTR testing and pregnancy termination 4) a proposal for the assessment of potential barriers to the implementation and dissemination of the produced documents to health care professionals involved in the care of pwCFTR-RD and a process to monitor the implementation of the CFTR-RD recommendations; 5) clinical trials investigating the efficacy of CFTR modulators in CFTR-RD and how endpoints and outcomes might be adapted to the heterogeneity of these disorders...
February 21, 2024: Journal of Cystic Fibrosis: Official Journal of the European Cystic Fibrosis Society
https://read.qxmd.com/read/38387997/hospitalisations-and-fatality-due-to-respiratory-diseases-according-to-a-national-database-in-brazil-a-longitudinal-study
#40
JOURNAL ARTICLE
Darllane Azevedo Lemos, Luiza Gabriela de Araújo Fonseca, Rencio Bento Florêncio, José Alexandre Barbosa de Almeida, Illia Nadinne Dantas Florentino Lima, Lucien Peroni Gualdi
BACKGROUND: Respiratory diseases (RDs) cause millions of hospitalisations and deaths worldwide, resulting in economic and social impacts. Strategies for health promotion and disease prevention based on the epidemiological profile of the population may reduce hospital costs. AIM: To characterise hospitalisations and deaths due to RDs in Brazilian adults above 20 years old between 2008 and 2021. METHODS: This ecological study used secondary data of hospitalisations and deaths due to RDs from the Hospital Information System of the Brazilian Unified Health System between 2008 and 2021...
February 21, 2024: BMJ Open Respiratory Research
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