69 research outputs found

    The unusual occurrence of green algal balls of <i>Chaetomorpha linum</i> on a beach in Sydney, Australia.

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    In spring 2014, thousands of green algal balls were washed up at Dee Why Beach, Sydney, New South Wales, Australia. Reports of algal balls are uncommon in marine systems, and mass strandings on beaches are even more rare, sparking both public and scientific interest. We identified the algal masses as Chaetomorpha linum by using light microscopy and DNA sequencing. We characterize the size and composition of the balls from Dee Why Beach and compare them to previous records of marine algal balls. We describe the environmental conditions that could explain their appearance, given the ecophysiology of C. linum

    A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol

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    Background: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe the protocol of a longitudinal observational study among people living with CKD. The study is developed to assess the bio-psychosocial factors associated with palliative care symptoms and concerns, and pattern of health services usage among Nigerians with stages 3–5 CKD. The overall objective is to establish the evidence-base for advocacy and policy formulation, treatment guidelines, care and services, and future clinical trial studies.Methods: This is a multi-center study to investigate the longitudinal course of symptoms and other concerns among patients with stages 3–5 CKD in Nigeria. Interviewer administered and self-report measures at baseline (T0) and 3-month (T1) address socio-demographic characteristics, clinical-illness related information, palliative care-related symptoms and other concerns, pattern of formal or informal service usage, and bio psychosocial measures including estimated glomerular filtration rate (eGFR), anxiety, depression, quality of life, functioning, social support and spiritual wellbeing.Discussion: This study represents the first longitudinal investigation of palliative care symptoms and concerns among people with CKD in Nigeria. It includes early stages of CKD in compliance with best practices, and a comprehensive range of bio-psychosocial outcomes to understand how these factors are associated with symptoms. This study will provide evidence for how best to integrate palliative care into management of CKD to improve care and quality of life of people with CKD. The study team welcomes collaborations with both national and international researchers

    Multi-centred mixed-methods PEPFAR HIV care & support public health evaluation: study protocol

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    BACKGROUND: A public health response is essential to meet the multidimensional needs of patients and families affected by HIV disease in sub-Saharan Africa. In order to appraise current provision of HIV care and support in East Africa, and to provide evidence-based direction to future care programming, and Public Health Evaluation was commissioned by the PEPFAR programme of the US Government. METHODS/DESIGN: This paper described the 2-Phase international mixed methods study protocol utilising longitudinal outcome measurement, surveys, patient and family qualitative interviews and focus groups, staff qualitative interviews, health economics and document analysis. Aim 1) To describe the nature and scope of HIV care and support in two African countries, including the types of facilities available, clients seen, and availability of specific components of care [Study Phase 1]. Aim 2) To determine patient health outcomes over time and principle cost drivers [Study Phase 2]. The study objectives are as follows. 1) To undertake a cross-sectional survey of service configuration and activity by sampling 10% of the facilities being funded by PEPFAR to provide HIV care and support in Kenya and Uganda (Phase 1) in order to describe care currently provided, including pharmacy drug reviews to determine availability and supply of essential drugs in HIV management. 2) To conduct patient focus group discussions at each of these (Phase 1) to determine care received. 3) To undertake a longitudinal prospective study of 1200 patients who are newly diagnosed with HIV or patients with HIV who present with a new problem attending PEPFAR care and support services. Data collection includes self-reported quality of life, core palliative outcomes and components of care received (Phase 2). 4) To conduct qualitative interviews with staff, patients and carers in order to explore and understand service issues and care provision in more depth (Phase 2). 5) To undertake document analysis to appraise the clinical care procedures at each facility (Phase 2). 6) To determine principle cost drivers including staff, overhead and laboratory costs (Phase 2). DISCUSSION: This novel mixed methods protocol will permit transparent presentation of subsequent dataset results publication, and offers a substantive model of protocol design to measure and integrate key activities and outcomes that underpin a public health approach to disease management in a low-income setting

    Reduced fire severity offers near-term buffer to climate-driven declines in conifer resilience across the western United States

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    Increasing fire severity and warmer, drier postfire conditions are making forests in the western United States (West) vulnerable to ecological transformation. Yet, the relative importance of and interactions between these drivers of forest change remain unresolved, particularly over upcoming decades. Here, we assess how the interactive impacts of changing climate and wildfire activity influenced conifer regeneration after 334 wildfires, using a dataset of postfire conifer regeneration from 10,230 field plots. Our findings highlight declining regeneration capacity across the West over the past four decades for the eight dominant conifer species studied. Postfire regeneration is sensitive to high-severity fire, which limits seed availability, and postfire climate, which influences seedling establishment. In the near-term, projected differences in recruitment probability between low- and high-severity fire scenarios were larger than projected climate change impacts for most species, suggesting that reductions in fire severity, and resultant impacts on seed availability, could partially offset expected climate-driven declines in postfire regeneration. Across 40 to 42% of the study area, we project postfire conifer regeneration to be likely following low-severity but not high-severity fire under future climate scenarios (2031 to 2050). However, increasingly warm, dry climate conditions are projected to eventually outweigh the influence of fire severity and seed availability. The percent of the study area considered unlikely to experience conifer regeneration, regardless of fire severity, increased from 5% in 1981 to 2000 to 26 to 31% by mid-century, highlighting a limited time window over which management actions that reduce fire severity may effectively support postfire conifer regeneration. © 2023 the Author(s)

    Redefining palliative care-a new consensus-based definition

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    Context: The International Association for Hospice and Palliative Care developed a consensus-based definition of palliative care (PC) that focuses on the relief of serious health-related suffering, a concept put forward by the Lancet Commission Global Access to Palliative Care and Pain Relief. Objective: The main objective of this article is to present the research behind the new definition. Methods: The three-phased consensus process involved health care workers from countries in all income levels. In Phase 1, 38 PC experts evaluated the components of the World Health Organization definition and suggested new/revised ones. In Phase 2, 412 International Association for Hospice and Palliative Care members in 88 countries expressed their level of agreement with the suggested components. In Phase 3, using results from Phase 2, the expert panel developed the definition. Results: The consensus-based definition is as follows: Palliative care is the active holistic care of individuals across all ages with serious health-related suffering due to severe illness and especially of those near the end of life. It aims to improve the quality of life of patients, their families and their caregivers. The definition includes a number of bullet points with additional details as well as recommendations for governments to reduce barriers to PC. Conclusion: Participants had significantly different perceptions and interpretations of PC. The greatest challenge faced by the core group was trying to find a middle ground between those who think that PC is the relief of all suffering and those who believe that PC describes the care of those with a very limited remaining life span

    A palliative care link nurse programme in Mulago Hospital, Uganda: an evaluation using mixed methods

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    BACKGROUND: Integrating palliative care (PC) and empowering the health care workforce is essential to achieve universal access to PC services. In 2010, 46 % of patients in Mulago Hospital, Uganda had a life limiting illness, of whom 96 % had PC needs. The university/hospital specialist PC unit (Makerere/Mulago Palliative Care Unit –MPCU) implemented a link-nurse model to empower hospital nurses to provide generalist PC. Over two years, 27 link nurses were trained and mentored and 11 clinical protocols developed. The aim of the study was to evaluate the impact of the palliative care link nurse programme at Mulago Hospital METHODS: An evaluation approach utilising mixed methods was used integrating qualitative and quantitative data including: pre and post course assessment confidence ratings; course evaluation forms; audit of clinical guidelines availability; review of link-nurse activity sheets/action plans; review of MPCU patient documentation; Most Significant Change (MSC); individual and focus group interviews. RESULTS: A significant difference was seen in nurses’ confidence after the training (p < 0.001). From July 2012 to December 2013, link nurses identified 2447 patients needing PC, of whom they cared for 2113 (86 %) and referred 334 (14 %) to MPCU. Clinical guidelines/protocols were utilised in 50 % of wards. Main themes identified include: change in attitude; developing new skills and knowledge; change in relationships; improved outcomes of care, along with the challenges that they experienced in integrating PC. Since the start of the programme there has been an increase in PC patients seen at the hospital (611 in 2011 to 1788 in 2013). CONCLUSION: The link-nurse programme is a practical model for integrating PC into generalist services. Recommendations have been made for ongoing development and expansion of the programme as an effective health systems strengthening approach in similar healthcare contexts, as well as the improvement in medical and nursing education

    Public preferences and priorities for end-of-life care in Kenya:a population-based street survey

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    BACKGROUND: End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. METHODS: Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. RESULTS: 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. CONCLUSION: This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home

    Glioma Through the Looking GLASS: Molecular Evolution of Diffuse Gliomas and the Glioma Longitudinal AnalySiS Consortium

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    Adult diffuse gliomas are a diverse group of brain neoplasms that inflict a high emotional toll on patients and their families. The Cancer Genome Atlas (TCGA) and similar projects have provided a comprehensive understanding of the somatic alterations and molecular subtypes of glioma at diagnosis. However, gliomas undergo significant cellular and molecular evolution during disease progression. We review the current knowledge on the genomic and epigenetic abnormalities in primary tumors and after disease recurrence, highlight the gaps in the literature, and elaborate on the need for a new multi-institutional effort to bridge these knowledge gaps and how the Glioma Longitudinal AnalySiS Consortium (GLASS) aims to systemically catalog the longitudinal changes in gliomas. The GLASS initiative will provide essential insights into the evolution of glioma toward a lethal phenotype, with the potential to reveal targetable vulnerabilities, and ultimately, improved outcomes for a patient population in need
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