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Development of an Innovative Decision-Aid to Better Align Patients' Implantable Cardioverter Defibrillator Shock Status With Goals of Care.
Circ Cardiovasc Qual Outcomes
January 2025
Department of Internal Medicine, Division of Cardiology, University of Texas Southwestern Medical Center, Dallas (S.G., Nimesh Patel, M.K., M.S.S.).
Palliative care training in Spanish medical schools: student assessment.
BMJ Support Palliat Care
January 2025
Pediatrics, Hospital Universitario 12 de Octubre, Madrid, Spain.
Objectives: This study investigates the status of end-of-life (EOL) care and palliative care (PC) training in Spanish medical schools and assesses students' perspectives.
Methods: The research employs a quantitative cross-sectional survey and a systematic review of curricula including schools to which the respondent students belonged to.
Results: A systematic review reveals that only 12 out of 39 universities offer mandatory PC or EOL care subjects, often integrated with other areas.
Progressive Loss of Cerebral Structures in ALG11-Related Congenital Disorder Glycosylation.
Pediatr Neurol
December 2024
Zickler Family Prenatal Pediatrics Institute, Children's National Hospital, Washington, District of Columbia; Department of Neurology, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia; Department of Pediatrics, The George Washington University School of Medicine and Health Sciences, Washington, District of Columbia. Electronic address:
Background: Congenital disorders of glycosylation (CDG) are a group of metabolic disorders related to dysfunctional glycoprotein and glycolipid biosynthesis. ALG11-related CDG is a rare member of this group, characterized by severe neurodevelopmental impairment, progressive microcephaly, sensorineural hearing loss, and epilepsy. The objective of this report is to provide an update on the phenotype and brain magnetic resonance imaging (MRI) at age seven years for a patient initially described in early infancy with fetal brain disruption sequence.
View Article and Find Full Text PDFNavigating adulthood: Exploring the transition needs of adolescents and young adults affected by Duchenne or Becker muscular dystrophy.
PLoS One
January 2025
Little Steps Association for Children with Duchenne Muscular Dystrophy and Becker Muscular Dystrophy, Kefar Saba, Israel.
For individuals with Duchenne or Becker muscular dystrophy (DMD and BMD, respectively), transitioning to adulthood presents significant challenges. Although considerable attention has been given to facilitating medical transitions due to the complexity of these conditions, less focus has been placed on other aspects of the transition, such as achieving independence. This study assessed the transition needs of people with DMD or BMD, exploring various domains including health, education, employment, living arrangements, transportation, daily activities, and independent personal life.
View Article and Find Full Text PDFPreferred and Actual Location of Death in Adolescents and Young Adults With Cancer.
JAMA Netw Open
January 2025
Division of Population Sciences, Dana-Farber Cancer Institute, Boston, Massachusetts.
Importance: Adolescent and young adult (AYA) patients with advanced cancer often die in hospital settings. Data characterizing the degree to which this pattern of care is concordant with patient goals are sparse.
Objective: To evaluate the extent of concordance between the preferred and actual location of death among AYA patients with cancer.
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