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Research agenda for ending preventable maternal deaths from postpartum haemorrhage: a WHO research prioritisation exercise.
BMJ Glob Health
November 2024
UNDP/UNFPA/UNICEF/WHO/World Bank Special Programme of Research, Development and Research Training in Human Reproduction (HRP), Department of Sexual and Reproductive Health and Research, World Health Organization, Geneva, Switzerland.
Introduction: Postpartum haemorrhage (PPH) remains the leading cause of maternal death. Yet there is a lack of clarity around what research is needed to determine what works and how best to deliver proven PPH interventions. This article describes a WHO-led effort to develop a global PPH research agenda for 2023-2030, to reinvigorate research and innovation while avoiding duplication and waste.
View Article and Find Full Text PDFPatient-reported data on the severity of Von Willebrand disease.
Haemophilia
November 2024
Department of Hematology, Erasmus MC, University Medical Center Rotterdam, Rotterdam, The Netherlands.
Article Synopsis
- The study investigates how patients with Von Willebrand disease (VWD) perceive the severity of their condition, highlighting a gap in understanding patient experiences alongside traditional lab measures.
- A nationwide survey in the Netherlands included 736 VWD patients, who reported their disease severity, bleeding scores, and quality of life through a questionnaire.
- Results show that self-reported severity aligns well with clinical classifications, and factors like type of VWD, bleeding severity, gender, treatment history, and specific lab values significantly influence patients' perception of their disease severity.
Genetic variants, thrombocytopenia, and clinical phenotype of type 2B von Willebrand disease: a median 16-year follow-up study.
J Thromb Haemost
December 2024
Department of Hematology, Erasmus MC, University Medical Center Rotterdam, The Netherlands. Electronic address:
Article Synopsis
- Type 2B Von Willebrand disease (VWD) is a bleeding disorder linked to specific genetic variations in the VWF gene, and the study aimed to explore how these genetic differences affect clinical symptoms over a 16-year period in a cohort of 64 patients.
- The research found that 67.2% of patients experienced thrombocytopenia (low platelet counts), which was most significantly associated with the p.Arg1306Trp genetic variant, showing considerably lower platelet counts compared to another variant, p.Arg1308Cys.
- Additionally, while some patient pregnancies led to decreased platelet counts, postpartum hemorrhages occurred despite preventative treatment, highlighting the complex relationship between genetic factors and bleeding events in affected individuals.
Incidence, Causes and Outcomes of Postpartum Hemorrhage in Eastern Ethiopia: A Multicenter Surveillance Study.
Matern Child Health J
December 2024
Department of Obstetrics and Gynaecology, Leiden University Medical Centre, Leiden, The Netherlands.
Objectives: Maternal mortality remains an unfinished global agenda and postpartum hemorrhage (PPH) remains one of the leading causes. The aims of this study were to describe the incidence, underlying causes, and case fatality rate of PPH in public hospitals in eastern Ethiopia.
Methods: This study was part of a larger Ethiopian Obstetric Surveillance System (EthOSS) project - a multicenter surveillance of women admitted to 13 public hospitals in eastern Ethiopia due to any of the five major obstetric conditions: obstetric hemorrhage, eclampsia, uterine rupture, sepsis, and severe anemia - conducted from April 1, 2021 to March 31, 2022.
Toward Personalized Care and Patient Empowerment and Perspectives on a Personal Health Record in Hemophilia Care: Qualitative Interview Study.
JMIR Hum Factors
September 2024
Department of Pediatric Hematology, Emma Children's Hospital, Amsterdam UMC location University of Amsterdam, Amsterdam, Netherlands.
Background: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care.
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