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Genomic sequencing in diverse and underserved pediatric populations: parent perspectives on understanding, uncertainty, psychosocial impact, and personal utility of results.
Genet Med
January 2025
Genomics Ethics, and Translational Research Program, RTI International, Research Triangle Park, NC; Department of Translational and Applied Genomics, Kaiser Permanente Center for Health Research, Portland, OR. Electronic address:
Purpose: Limited evidence evaluates parents' perceptions of their child's clinical genomic sequencing (GS) results, particularly among individuals from medically underserved groups. Five Clinical Sequencing Evidence-Generating Research (CSER) consortium studies performed GS in children with suspected genetic conditions with high proportions of individuals from underserved groups to address this evidence gap.
Methods: Parents completed surveys of perceived understanding, personal utility, and test-related distress after GS result disclosure.
Economic and equity evaluation of age restrictions on over-the-counter diet pills and muscle-building supplements.
Health Aff Sch
January 2025
Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Boston, MA 02115, United States.
Over-the-counter diet pills and muscle-building supplements are linked to increased eating disorder diagnoses, especially among youth. With limited regulatory oversight, minors may unknowingly consume harmful substances leading to other adverse effects. Massachusetts has proposed restricting sales to individuals under 18 years.
View Article and Find Full Text PDFPatients, parents and professional perspectives on molecular radiotherapy for neuroblastoma and paediatric neuroendocrine cancers.
Nucl Med Commun
January 2025
Department of Oncology, University College London Hospitals NHS Foundation Trust and UCL Cancer Institute, University College London, London, UK.
Treatment with radioactive drugs (molecular radiotherapy, MRT) is an option for selected children with neuroblastoma and neuroendocrine cancers. As few hospitals are appropriately equipped and staffed to provide paediatric MRT, many families have to travel long distances from home for prolonged periods. To improve professional understanding of the challenges faced by children receiving these treatments and their parents, and to help them appreciate the difficulties faced by professionals in delivering complex treatments, a meeting bringing together parents, patients and professionals was held.
View Article and Find Full Text PDFCost-effectiveness of watchful waiting versus immediate emergency department transfer after epinephrine autoinjector use in Canada.
Allergy Asthma Clin Immunol
January 2025
Collaboration for Outcomes Research and Evaluation, Faculty of Pharmaceutical Sciences, University of British Columbia, 2405 Wesbrook Mall, Vancouver, BC, V6T 1Z3, Canada.
Background: Until recently, immediate emergency department (ED) transfer after food-related anaphylactic reactions was recommended regardless of symptom resolution following use of an epinephrine autoinjector (EAI). We evaluated the cost-effectiveness of delayed ED transfer after EAI use in non-medical settings (watchful waiting) compared to immediate ED transfer among pediatric patients with food allergies in Canada.
Methods: We developed a probabilistic Markov model of individuals starting at age of one year who are at risk of severe food-related allergic reactions requiring epinephrine.
'They went for the test together but came back separately': a constructivist grounded theory perspective on male engagement in antenatal HIV testing in Bamenda, Cameroon.
BMC Pregnancy Childbirth
January 2025
Department of Disease Control, London School of Hygiene and Tropical Medicine, London, UK.
Introduction: Male engagement in HIV testing during pregnancy significantly contributes towards the prevention of maternal seroconversion and paediatric HIV acquisition. Despite this, men especially the male partners of pregnant women have been consistently missing in the HIV prevention cascade. The factors accounting for sub-optimal levels in male engagement intersect but reasons for this are poorly understood.
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