Context: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden, and therefore, more knowledge about the palliative care provided close to death is needed.
Objectives: To describe symptom prevalence, relief, and management during the last week of life, as well as end-of-life communication, in patients with ESKD.
Methods: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (International Classification of Diseases, Tenth Revision, Sweden; N18.5 or N18.9), during 2011 and 2012 were selected.
Results: About 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44%, respectively, were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/inpatient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.
Conclusion: Even if death is expected, most patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.
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http://dx.doi.org/10.1016/j.jpainsymman.2017.09.015 | DOI Listing |
World J Surg Oncol
January 2025
Department of Oesophago-Gastric & Bariatric Surgery, Salford Care Organisation, Northern Care Alliance NHS Foundation Trust, Salford Royal Hospital, Manchester, UK.
Background: The delivery of cancer services changed significantly during the COVID-19 pandemic. This study aimed to describe changes in presentations, assess the change in recommendations by the MDT during the pandemic, and describe the subsequent long-term impact of these changes on survival rates in patients with EG cancer.
Methods: A retrospective cohort study was designed comparing three patient groups of those referred to EG MDT in the same 6-month period pre-pandemic (PP;2019) during the initial phase of the pandemic (P1;2020) and the year after the initial phase (P2;2021).
BMC Palliat Care
January 2025
Kingston University London, London, United Kingdom.
Background: People with intellectual disabilities are less likely to have access to palliative care, and the evidence shows that their deaths are often unanticipated, unplanned for, and poorly managed. Within the general population, people from minoritised ethnic groups are under-represented within palliative care services. End-of-life care planning with people with intellectual disabilities from minoritised ethnic groups may be a way to address these issues.
View Article and Find Full Text PDFJ Affect Disord
January 2025
Faculty of Health, IMPACCT, University of Technology Sydney, Ultimo, NSW, Australia; Department of Palliative Care, Calvary Health Care, Kogarah, NSW, Australia.
Background: The COVID-19 pandemic disrupted many care systems limiting bereaved people's ability to access social, community, and professional support. This study investigated help-seeking of people living with probable prolonged grief disorder (PGD) to identify challenges and facilitators of care, with the aim of informing bereavement practice and policy recommendations.
Methods: Participants (N = 786; 96.
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 PDFClin Neurol Neurosurg
January 2025
Department of Neurosurgery, Aga Khan University, Karachi, Sindh, Pakistan. Electronic address:
Objectives: To provide information about implementation, resources, practice patterns and prevalent perceptions regarding neuro-oncology tumor boards (NOTBs) in a lower middle income country.
Methods: A nationwide survey was designed to include licensed neurosurgeons involving data on practice, structure, and perceptions of NOTBs with non-probability sampling, a pre-validated proforma, data analysis using SPSS v27, and geospatial mapping using Quantum GIS.
Results: 139 neurosurgeons were surveyed from 63 neurosurgical centers of a lower middle income country.
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