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Compared with younger children and older adults, adolescent and young adult (AYA) patients with cancer receive more intensive end-of-life (EOL) care. We hypothesize that enhanced understanding of AYA preferences, increased engagement of these patients in decision-making, and improved communication of their preferences with family members and the medical team will lead to increased provision of goal-concordant care and decreased intensity of EOL care. In this study, we describe the development of a novel tool that quantifies the relative importance of numerous factors considered by AYA patients with cancer, their parents, and health care providers when choosing between treatment options.
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http://dx.doi.org/10.1089/jayao.2018.0116 | DOI Listing |
Turk J Pediatr
September 2025
Department of Pediatrics, Faculty of Medicine, Afyonkarahisar Health Sciences University, Afyonkarahisar, Türkiye.
Background: With the development of technology, easier access to the internet and its excessive use have led to problematic internet use (PIU). The prevalence of PIU and its association with lifestyle behaviors in adolescents have become subjects of increasing academic interest. This study aimed to determine the prevalence of PIU among Turkish high school students and to investigate its association with sleep, physical activity and dietary habits.
View Article and Find Full Text PDFJ Med Internet Res
September 2025
Department of Community Medicine, Faculty of Health, UiT The Arctic University of Norway, Tromsø, Norway.
Background: The ability to access and evaluate online health information is essential for young adults to manage their physical and mental well-being. With the growing integration of the internet, mobile technology, and social media, young adults (aged 18-30 years) are increasingly turning to digital platforms for health-related content. Despite this trend, there remains a lack of systematic insights into their specific behaviors, preferences, and needs when seeking health information online.
View Article and Find Full Text PDFJ Med Internet Res
September 2025
Center for Healthy Minds and Department of Counseling Psychology, University of Wisconsin-Madison, Madison, WI, United States.
Background: Ecological momentary assessment (EMA) is increasingly being incorporated into intervention studies to acquire a more fine-grained and ecologically valid assessment of change. The added utility of including relatively burdensome EMA measures in a clinical trial hinges on several psychometric assumptions, including that these measure are (1) reliable, (2) related to but not redundant with conventional self-report measures (convergent and discriminant validity), (3) sensitive to intervention-related change, and (4) associated with a clinically relevant criterion of improvement (criterion validity) above conventional self-report measures (incremental validity).
Objective: This study aimed to evaluate the reliability, validity, and sensitivity to change of conventional self-report versus EMA measures of rumination improvement.
Neurology
October 2025
Neurology, Epilepsy and Movement Disorders Unit, Bambino Gesù Children's Hospital, IRCCS, Full Member of European Reference Network on Rare and Complex Epilepsies - EpiCARE, Rome, Italy.
Objectives: Neuronal ceroid lipofuscinosis type 3 (CLN3) is a rare lysosomal storage disorder characterized by progressive neurodegeneration. No disease-modifying treatments are currently available. Miglustat, a substrate reduction therapy, has shown preclinical efficacy in CLN3 models (conference abstract).
View Article and Find Full Text PDFNeurol Neuroimmunol Neuroinflamm
November 2025
Departments of Neurology and Ophthalmology, NYU Grossman School of Medicine, NY; and.
Background And Objectives: While reductions in optical coherence tomography (OCT) pRNFL and ganglion cell-inner plexiform layer thicknesses have been shown to be associated with brain atrophy in adult-onset MS (AOMS) cohorts, the relationship between OCT and brain MRI measures is less established in pediatric-onset MS (POMS). Our aim was to examine the associations of OCT measures with volumetric MRI in a cohort of patients with POMS to determine whether OCT measures reflect CNS neurodegeneration in this patient population, as is seen in AOMS cohorts.
Methods: This was a cross-sectional study with retrospective ascertainment of patients with POMS evaluated at a single center with expertise in POMS and neuro-ophthalmology.