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palliative care

Zornitza Stark, Sebastian Lunke, Gemma R Brett, Natalie B Tan, Rachel Stapleton, Smitha Kumble, Alison Yeung, Dean G Phelan, Belinda Chong, Miriam Fanjul-Fernandez, Justine E Marum, Matthew Hunter, Anna Jarmolowicz, Yael Prawer, Jessica R Riseley, Matthew Regan, Justine Elliott, Melissa Martyn, Stephanie Best, Tiong Y Tan, Clara L Gaff, Susan M White
PurposeThe purpose of the study was to implement and prospectively evaluate the outcomes of a rapid genomic diagnosis program at two pediatric tertiary centers.MethodsRapid singleton whole-exome sequencing (rWES) was performed in acutely unwell pediatric patients with suspected monogenic disorders. Laboratory and clinical barriers to implementation were addressed through continuous multidisciplinary review of process parameters. Diagnostic and clinical utility and cost-effectiveness of rWES were assessed.ResultsOf 40 enrolled patients, 21 (52...
March 15, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
Marian Krawczyk, Richard Sawatzky, Kara Schick-Makaroff, Kelli Stajduhar, Joakim Öhlen, Sheryl Reimer-Kirkham, Esther Mercedes Laforest, Robin Cohen
This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care...
March 1, 2018: Qualitative Health Research
Rajat Das Gupta, Asm Shahabuddin
This review aimed to compare Bangladesh's Universal Health Coverage (UHC) monitoring framework with the global-level recommendations and to find out the existing gaps of Bangladesh's UHC monitoring framework compared to the global recommendations. In order to reach the aims of the review, we systematically searched two electronic databases - PubMed and Google Scholar - by using appropriate keywords to select articles that describe issues related to UHC and the monitoring framework of UHC applied globally and particularly in Bangladesh...
January 8, 2018: Curēus
Anna Therese Bjerkreim, Andrej Netland Khanevski, Solveig Bergliot Glad, Lars Thomassen, Halvor Naess, Nicola Logallo
Background: Intracerebral hemorrhage (ICH) is the most severe form of stroke, but data on readmission after ICH are sparse. We aimed to determine frequency, causes, and predictors of 30-day readmission after ICH. Materials and Methods: This retrospective cohort study includes all spontaneous ICH survivors admitted to the stroke unit at Haukeland University Hospital in Bergen in Norway from July 2007 to December 2013. Patients were followed by review of electronic medical charts, and the first unplanned readmission within 30 days after discharge was used as final outcome...
March 2018: Brain and Behavior
Mohan Giri, Mamata Giri, Rabin Jung Thapa, Bibhuti Upreti, Bijay Pariyar
Breast cancer is the second most common malignancy among Nepalese women. Breast cancer places a substantial burden on the Nepalese healthcare system, but information regarding the number of women living with breast cancer is not well recorded. In countries with lower levels of resources such as Nepal, breast cancers are commonly diagnosed at late stages and women may receive inadequate treatment, pain relief or palliative care. Socioeconomic disparities and insufficient financial resources hinder prevention of breast cancer in Nepal...
April 2018: Biomedical Reports
Shane Sinclair, Thomas F Hack, Shelley Raffin-Bouchal, Susan McClement, Kelli Stajduhar, Pavneet Singh, Neil A Hagen, Aynharan Sinnarajah, Harvey Max Chochinov
BACKGROUND: Healthcare providers are considered the primary conduit of compassion in healthcare. Although most healthcare providers desire to provide compassion, and patients and families expect to receive it, an evidence-based understanding of the construct and its associated dimensions from the perspective of healthcare providers is needed. OBJECTIVES: The aim of this study was to investigate healthcare providers' perspectives and experiences of compassion in order to generate an empirically derived, clinically informed model...
March 14, 2018: BMJ Open
B Wee
Death and dying are inevitable. High quality and accessible palliative and end of life care can help people who are facing progressive life-threatening and life-limiting illness, and those dear to them, by focusing on their quality of life and addressing the problems associated with their situation. This paper draws attention to the scale of the challenge, some of the key areas we could address and the shifts in culture, mindset and leadership approach that are needed.
December 2017: Journal of the Royal College of Physicians of Edinburgh
Patrizia Ciammella, Giorgia Timon, Alessio Bruni, Davide Franceschini, Paolo Borghetti, Nicolò Giaj-Levra, Carlo Greco, Vieri Scotti, Marco Trovo
INTRODUCTION: Radiation therapy plays an important role in the management of SCLC both in curative and palliative setting, however, conflicting data from clinical trials incite debate over the appropriate use of radiation therapy regarding prophylactic cranial irradiation (PCI) and/or thoracic consolidative in extensive-stage SCLC (ES-SCLC). This survey is conducted to evaluate the current pattern of care among Italian radiation oncologists. METHODS: In June 2016, all Italian radiation oncologists were invited to a web-based survey...
March 13, 2018: La Radiologia Medica
Fabiola Fuchs, Martin Robausch
BACKGROUND: The topic of "medical oversupply at the end-of-life" is being discussed intensively internationally. The aim of this paper is to present the data of end-of-life care in one region in Austria (Lower Austria). METHODS: The data basis for the end-of-life indicators was the routine data (secondary data analysis) of the Lower Austrian District Health Insurance Fund (NÖGKK) from 2015. The basic population consisted of persons with inpatient hospitalization with a cancer diagnosis...
March 13, 2018: Wiener Medizinische Wochenschrift
Carsten Nieder, Thomas A Kämpe
Introduction Our department's standard work-flow includes assessment of all the patients with the Edmonton Symptom Assessment System (ESAS), a one-sheet questionnaire addressing 11 major symptoms and wellbeing on a numeric scale of zero-10, before the palliative radiotherapy (PRT). Based on previous research, we hypothesized that the patients with minimal or moderate total symptom burden might have better overall survival after the PRT than those with at least one higher symptom score. Methods We performed a retrospective analysis of 94 patients and calculated actuarial survival from the first day of the PRT (Kaplan-Meier method)...
January 6, 2018: Curēus
Stephanie Stiel, Mareike Nurnus, Christoph Ostgathe, Carsten Klein
BACKGROUND: Clinical practice of Palliative Sedation (PS) varies between institutions worldwide and sometimes includes problematic practices. Little available research points at different definitions and frameworks which may contribute to uncertainty of healthcare professionals in the application of PS. This analysis investigates what demographic factors and characteristics of treatment practices differ between institutions with high versus low sedation rates estimates in Palliative and Hospice Care in Germany...
March 13, 2018: BMC Palliative Care
Sarah Gray, Bertil Axelsson
INTRODUCTION: Amongst patients with incurable cancer approaching death, cachexia is common and associated with adverse outcomes. The term cachexia lacks a universally accepted definition and there is no consensus regarding which variables are to be measured. Furthermore, an elevated C-reactive protein is a common clinical challenge in this patient group. This study aims to add to the ongoing discussion regarding the definition of cancer cachexia and to study the role of C-reactive protein and s-albumin in this context...
2018: PloS One
Lisa D DiMartino, Sarah A Birken, Laura C Hanson, Justin G Trogdon, Alecia S Clary, Morris Weinberger, Katherine Reeder-Hayes, Bryan J Weiner
BACKGROUND: The implementation science literature has contributed important insights regarding the influence of formal policies and practices on health care innovation implementation, whereas informal implementation policies and practices have garnered little attention. The broader literature suggests that informal implementation policies and practices could also influence innovation use. PURPOSE: We used the Organizational Theory of Innovation Implementation to further understand the role of formal and informal implementation policies and practices as determinants of implementation effectiveness...
March 12, 2018: Health Care Management Review
Kristi Soileau, Nanette Elster
The hospice philosophy embraces palliative care for the terminally ill, for whom quality of life is the central focus of comfort care management. Often, caregivers hesitate or simply do not elect to extend oral care for patients nearing the end of life, due to difficulties encountered in patient compliance, a sense of futility in doing so, staff time constraints in prioritizing care, underfunding, or a lack of education as to how and why such care should be delivered to the hospice patient. This article aims to show physiological and psychosocial reasons why the hospice patient has a need for properly and regularly implemented oral care and why dental professionals have an ethical responsibility to address the current void that exists in hospice-centered oral care...
January 1, 2018: Journal of Palliative Care
S Dueland, A Foss, J M Solheim, M Hagness, P-D Line
BACKGROUND: Liver transplantation is considered the standard of care for patients with hepatocellular carcinoma (HCC) within the Milan criteria. Liver transplantation in patients with unresectable colorectal cancer with liver-only disease has been shown to be associated with a 5-year overall survival rate of 56 per cent, compared with 9 per cent in patients receiving standard palliative chemotherapy. The aim of the present study was to compare disease-free (DFS) and overall (OS) survival after liver transplantation in patients with HCC and those with colorectal metastases...
March 13, 2018: British Journal of Surgery
John W Wax, Amy W An, Nicole Kosier, Timothy E Quill
Voluntary stopping of eating and drinking (VSED) is a deliberate, self-initiated attempt to hasten death in the setting of suffering refractory to optimal palliative interventions or prolonged dying that a person finds intolerable. Individuals who consider VSED tend to be older, have a serious but not always imminently terminal illness, place a high value on independence, and have significant illness burden. VSED can theoretically be performed independent of clinician assistance and therefore avoids many of the ethical and legal concerns associated with physician-assisted dying or other palliative measures of last resort, However, VSED is an intense process fraught with new sources of somatic and emotional suffering for individuals and their caregivers, so VSED is best supervised by an experienced, well-informed clinician who can provide appropriate pre-intervention assessment, anticipatory guidance, medical treatment of symptoms, and emotional support...
March 2018: Journal of the American Geriatrics Society
Taro Funakoshi, Takahiro Horimatsu, Michio Nakamura, Koichi Shiroshita, Koichi Suyama, Masashi Mukoyama, Takuro Mizukami, Tsutomu Sakurada, Eishi Baba, Kazuhiko Tsuruya, Akira Nozaki, Kensei Yahata, Yukinori Ozaki, Yoshifumi Ubara, Hisateru Yasui, Akihiro Yoshimoto, Shingo Fukuma, Naoya Kondo, Takeshi Matsubara, Kazuo Matsubara, Shunichi Fukuhara, Motoko Yanagita, Manabu Muto
Background: Cancer is a major cause of death in patients undergoing haemodialysis. However, information about the actual clinical practice of chemotherapy for patients with cancer undergoing haemodialysis is lacking. We conducted a nationwide survey using questionnaires on the clinical practice of chemotherapy for such patients. Patients and methods: The nationwide survey included patients undergoing haemodialysis who were subsequently diagnosed with cancer in 20 hospitals in Japan from January 2010 to December 2012...
2018: ESMO Open
Kathleen Oare Lindell, Mehdi Nouraie, Melinda J Klesen, Sara Klein, Kevin F Gibson, Daniel J Kass, Margaret Quinn Rosenzweig
Introduction: Idiopathic pulmonary fibrosis (IPF), a progressive life-limiting lung disease affects approximately 128 000 newly diagnosed individuals in the USA annually. IPF, a disease of ageing associated with intense medical and financial burden, is expected to grow in incidence globally. Median survival from diagnosis is 3.8 years, and many of these patients succumb to a rapid death within 6 months. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses...
2018: BMJ Open Respiratory Research
Tinne Smets, Bregje B D Onwuteaka-Philipsen, Rose Miranda, Lara Pivodic, Marc Tanghe, Hein van Hout, Roeline H R W Pasman, Mariska Oosterveld-Vlug, Ruth Piers, Nele Van Den Noortgate, Anne B Wichmann, Yvonne Engels, Myrra Vernooij-Dassen, Jo Hockley, Katherine Froggatt, Sheila Payne, Katarzyna Szczerbińska, Marika Kylänen, Suvi Leppäaho, Ilona Barańska, Giovanni Gambassi, Sophie Pautex, Catherine Bassal, Luc Deliens, Lieve Van den Block
BACKGROUND: Several studies have highlighted the need for improvement in palliative care delivered to older people long-term care facilities. However, the available evidence on how to improve palliative care in these settings is weak, especially in Europe. We describe the protocol of the PACE trial aimed to 1) evaluate the effectiveness and cost-effectiveness of the 'PACE Steps to Success' palliative care intervention for older people in long-term care facilities, and 2) assess the implementation process and identify facilitators and barriers for implementation in different countries...
March 12, 2018: BMC Palliative Care
Yee-Hsin Kao, Yao-Ting Liu, Malcolm Koo, Jui-Kun Chiang
BACKGROUND: For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. METHODS: This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan...
March 12, 2018: BMC Palliative Care
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