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Navigating 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.
Patient-physician communication in advanced kidney disease: a narrative review.
J Nephrol
January 2025
Department of Medicine, Division of Nephrology, Loma Linda University Medical Center, Loma Linda, CA, USA.
The increasing prevalence of kidney failure highlights the crucial need for effective patient-physician communication to improve health-related quality of life and ensure adherence to treatment plans. This narrative review evaluates communication practices in the context of advanced kidney disease, focusing on the frameworks of shared decision-making, advanced care planning, and communication skills training among nephrologists. The findings highlight the significant gaps in patient-physician communication, particularly in the domains of advanced care planning, shared decision-making, and dialysis withdrawal.
View Article and Find Full Text PDF[Patient safety in palliative surgery].
Chirurgie (Heidelb)
January 2025
Klinik für Allgemein-, Viszeral- und Transplantationschirurgie, LMU Klinikum München, Marchioninistraße 15, 81377, München, Deutschland.
Palliative surgery aims to improve the quality of life for patients with incurable diseases. This patient group is vulnerable due to the underlying illness, prior treatment and comorbidities, which increase the risk of complications that can negatively impact the course of the disease and quality of life. Palliative surgical interventions often provide effective long-term symptom control but are more invasive than conservative, interventional endoscopic or interventional radiological alternatives.
View Article and Find Full Text PDFSAHD-10: Development and initial validation of a short version of the Schedule of Attitudes Toward Hastened Death based on a large multinational sample.
Palliat Support Care
January 2025
Department of Palliative Medicine, Faculty of Medicine and University Hospital, University of Cologne, Cologne, Germany.
Objectives: Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection.
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