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Learning About Their Condition: The Gradual Path of Young People With Childhood-Onset Motor Disabilities.
Acta Paediatr
January 2025
Paediatric Neurology and Neurorehabilitation Unit, Lausanne University Hospital and University of Lausanne, Lausanne, Switzerland.
Aim: Young people with childhood-onset motor disabilities face unique challenges in understanding and managing their condition. This study explored how they learnt about their condition.
Method: A descriptive qualitative study was conducted in 2023-2024 at a Swiss paediatric neurorehabilitation unit.
Identification of strengths and weaknesses of the healthcare system for persons living with rare diseases in Catalonia (Spain), and recommendations to improve its comprehensive attention: the "acERca las enfermedades raras" project.
Orphanet J Rare Dis
January 2025
Laboratory of Neurogenetics and Molecular Medicine, Center for Genomic Sciences in Medicine, Institut de Recerca Sant Joan de Déu, Únicas SJD Center, Hospital Sant Joan de Déu, Barcelona, Spain.
Background: Rare diseases (RDs) are a heterogeneous group of complex and low-prevalence conditions in which the time to establish a definitive diagnosis is often too long. In addition, for most RDs, few to no treatments are available and it is often difficult to find a specialized care team.
Objectives: The project "acERca las enfermedades raras" (in English: "bringing RDs closer") is an initiative primary designed to generate a consensus by a multidisciplinary group of experts to detect the strengths and weaknesses in the public healthcare system concerning the comprehensive care of persons living with a RD (PLWRD) in the region of Catalonia, Spain, where a Network of Clinical Expert Units (Xarxa d'Unitats de Expertesa Clínica or XUEC) was created and is being implemented since 2015.
Patient advocacy is a duty for professional nurses; however, not all nurses are empowered to advocate for meeting patients' needs. Participation in labor unions may serve as a venue for nurses with limited institutional decision-making authority to advocate for patient needs; however, unionization can be a time-intensive and fraught process. This study examined how nurses participating in a new union in an urban United States hospital described their reasons for participating in a labor union during collective bargaining.
View Article and Find Full Text PDFImpact of corticosteroids on the efficacy of CD19/22 CAR-T cell therapy in pediatric patients with B-ALL: a single-center study.
Front Pediatr
January 2025
Department of Cell Immunotherapy, Shanghai Children's Medical Center, Shanghai Jiao Tong University School of Medicine, Shanghai, China.
Introduction: Corticosteroids are used for toxicity management, raising concerns about whether they may affect the anti-leukemic effects of chimeric antigen receptor (CAR)-T cells.
Methods And Results: In this study, we retrospectively analyzed patients (fined two subgroups based on disease burden. Of the 75 cases in the low disease burden (LDB) group (MRD < 5%, no extramedullary disease), there was no significant difference between the use of steroids and event-free survival (EFS) ( = 0.
Antenatal care and breastfeeding practices in Sub-Saharan Africa: an analysis of demographic and health surveys.
BMC Pregnancy Childbirth
January 2025
Department of Behavioral and Community Health Sciences, University of Pittsburgh School of Public Health, Pittsburgh, PA, USA.
Background: The World Health Organization (WHO) recommends immediate breastfeeding (within the first hour after birth) and exclusive breastfeeding (for the first six months of life), particularly in low-resource settings such as sub-Saharan Africa. In 2016, WHO updated its antenatal care (ANC) guidelines, recommending at least eight (8+) ANC contacts during pregnancy to improve maternal and child health outcomes. This study investigates i) trends in breastfeeding practices across sub-Saharan Africa following the rollout of the revised WHO 2016 ANC policy and ii) the relationship between ANC uptake and exclusive or early breastfeeding.
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