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palliative care

Wei Gao, Vincent Crosby, Andrew Wilcock, Rachael Burman, Eli Silber, Nilay Hepgul, K Ray Chaudhuri, Irene J Higginson
BACKGROUND: There is no standard palliative care outcome measure for people with progressive long term neurological conditions (LTNC). This study aims to determine the psychometric properties of a new 8-item palliative care outcome scale of symptom burden (IPOS Neuro-S8) in this population. DATA AND METHODS: Data were merged from a Phase II palliative care intervention study in multiple sclerosis (MS) and a longitudinal observational study in idiopathic Parkinson's disease (IPD), multiple system atrophy (MSA) and progressive supranuclear palsy (PSP)...
2016: PloS One
Yılmaz Bülbül, Tevfik Ozlu, Sibel Arinc, Berna Akinci Ozyurek, Hulya Gunbatar, Aysegul Senturk, Ayse Bahadir, Melike Ozcelik, Ufuk Yilmaz, Makbule Ozlem Akbay, Leyla Saglam, Talat Kilic, Gamze Kirkil, Neslihan Ozcelik, Dursun Tatar, Serap Argun Baris, Durdu Mehmet Yavsan, Hadice Selimoglu Sen, Serdar Berk, Murat Acat, Gulfidan Cakmak, Perran Fulden Yumuk, Yavuz Selim Intepe, Ümran Toru, Sibel Oktem Ayik, Ilknur Basyigit, Sibel Ozkurt, Levent Cem Mutlu, Zehra Asuk Yasar, Hidir Esme, Mehmet Muharrem Erol, Ozlem Oruc, Yurdanur Erdoğan, Selvi Asker, Arife Ulas, Serhat Erol, Bugra Kerget, Ahmet Emin Erbaycu, Turgut Teke, Mehmet Beşiroğlu, Huseyin Can, Ayse Dalli, Fahrettin Talay
No abstract text is available yet for this article.
October 24, 2016: Medical Principles and Practice: International Journal of the Kuwait University, Health Science Centre
C Lo, T Panday, J Zeppieri, A Rydall, P Murphy-Kane, C Zimmermann, G Rodin
Existential distress is of clinical concern in patients with terminal illness. Although existential distress has been used to describe a broad spectrum of psychological disturbances, its narrower definition may be confined to distress that arises when the meaning and value of one's life is unclear, and is comorbid with feelings of loneliness and low self-worth. To promote further study, we developed and pilot-tested a 10-item Existential Distress Scale (EDS). Twenty-one patients with advanced cancer were recruited from a palliative care unit...
October 24, 2016: European Journal of Cancer Care
S Chow, V Galvis, M Pillai, R Leach, E Keene, A Spencer-Shaw, A Shablak, J Shanks, T Liptrot, F Thistlethwaite, R E Hawkins
BACKGROUND: VEGF-targeted therapy has become the mainstay of treatment for majority of mRCC patients. For most patients, benefit is short-lived and therefore treatment remains palliative in intent. HD IL2 is an effective immunotherapy treatment capable of durable remission in some patients but its unselected use has been difficult due to its modest response rate and considerable adverse effects. Using set pathology criteria as a selection tool in clinical practice, we have been able to show improved outcomes in our previous report...
2016: Journal for Immunotherapy of Cancer
Kate Brameld, Katrina Spilsbury, Lorna Rosenwax, Kevin Murray, James Semmens
BACKGROUND: Studies aiming to identify palliative care populations have used data from death certificates and in some cases hospital records. The size and characteristics of the identified populations can show considerable variation depending on the data sources used. It is important that service planners and researchers are aware of this. AIM: To illustrate the differences in the size and characteristics of a potential palliative care population depending on the differential use of linked hospital records and death certificate data...
October 24, 2016: Palliative Medicine
R Aubry
On February 2, 2016, the French parliament adopted legislation creating new rights for the terminally ill. The text modifies and reinforces the rights of patients to end-of-life care and strengthens the status of surrogate decision makers. Under the new regulations, advance directives become legally binding though not unenforceable. Two types of advance directives are distinguished depending on whether the person is suffering or not from a serious illness when drafting them. The attending physician must abide by the patient's advance directives except in three situations: there is a life-threatening emergency; the directives are manifestly inappropriate; the directives are not compatible with the patient's medical condition...
October 21, 2016: Revue Neurologique
Helena S Stöckle, Sigrid Haarmann-Doetkotte, Claudia Bausewein, Martin J Fegg
BACKGROUND: Existential behavioural therapy (EBT) is a recently developed intervention to support informal caregivers of patients in a specialist palliative care unit and was initially established as a six-session group programme. This pilot study aimed to test the feasibility and acceptability of an adapted short-term, individual approach of EBT in preparation for a randomized controlled trial (RCT). METHODS: The study was conducted in a prospective, mixed methods design including four quantitiative assessments with embedded qualitative interviews at one assessment...
October 24, 2016: BMC Palliative Care
Megan Quinn, Sheila Gephart
BACKGROUND: Palliative care is a holistic framework that is designed to improve quality of life by identifying and treating distressing symptoms of life-threatening or complex conditions. Neonatal palliative care (NPC) has potential benefits for parents, staff, and patients, yet evidence suggests that implementation and utilization of organized NPC services are low. PURPOSE: The purpose of this study is to answer the clinical question: In neonatal intensive care, what evidence can be used to guide implementation of palliative care protocols? SEARCH STRATEGY: A literature search was conducted using CINAHL (Cumulative Index of Nursing and Allied Health Literature), PubMed, and the Cochrane Library databases...
October 22, 2016: Advances in Neonatal Care: Official Journal of the National Association of Neonatal Nurses
Puneeta Tandon, K Rajender Reddy, Jacqueline G O'Leary, Guadalupe Garcia-Tsao, Juan G Abraldes, Florence Wong, Scott W Biggins, Benedict Maliakkal, Michael B Fallon, Ram M Subramanian, Paul Thuluvath, Patrick S Kamath, Leroy R Thacker, Jasmohan S Bajaj
BACKGROUND AND AIMS: Identification of patients with cirrhosis at risk for death within 3 months of discharge from the hospital is essential to individualize post-discharge plans. The objective of the study was to identify an easy-to-use prognostic model based on the Karnofsky Performance Status (KPS). METHODS: NACSELD consists of 16 tertiary-care hepatology centers that prospectively enroll non-electively admitted cirrhotic patients. Patients enrolled had KPS assessed one week post-discharge...
October 24, 2016: Hepatology: Official Journal of the American Association for the Study of Liver Diseases
Tracey McConnell, Sam Porter
OBJECTIVE: Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. METHOD: We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care...
October 24, 2016: Palliative & Supportive Care
Leo H Wang, Michael A Elliott, Lily Jung Henson, Elba Gerena-Maldonado, Susan Strom, Sharon Downing, Jennifer Vetrovs, Paige Kayihan, Piper Paul, Kate Kennedy, Joshua O Benditt, Michael D Weiss
OBJECTIVES: To describe the amyotrophic lateral sclerosis (ALS) patients who sought medication under the Washington State Death with Dignity (DWD) Act since its inception in 2009. METHODS: Chart review at 3 tertiary medical centers in the Seattle/Puget Sound region and comparison to publicly available data of ALS and all-cause DWD cohorts from Washington and Oregon. RESULTS: In Washington State, 39 patients with ALS requested DWD from the University of Washington, Virginia Mason, and Swedish Medical Centers beginning in 2009...
October 21, 2016: Neurology
Erin Traister, Kim L Larson, Dell Hagwood
PURPOSE: We sought to understand decision making, family involvement, and cultural factors that influence palliative care for Guatemalans. DESIGN: A qualitative descriptive study was conducted in Guatemala to explore palliative care experiences among seven participants. FINDINGS: The overarching theme was Relief from Suffering, reinforced by three support systems: the family, community rezadora, and priest. The family made decisions and provided physical care...
October 21, 2016: Journal of Transcultural Nursing: Official Journal of the Transcultural Nursing Society
Juan Jose Saldaña Barrios, Luis Mendoza, Edgardo Pitti, Miguel Vargas
In this work, the authors present two eHealth platforms that are examples of how health systems are migrating from client-server architecture to the web-based and ubiquitous paradigm. These two platforms were modeled, designed, developed and implemented with positive results. First, using ambient-assisted living and ubiquitous computing, the authors enhance how palliative care is being provided to the elderly patients and patients with terminal illness, making the work of doctors, nurses and other health actors easier...
October 21, 2016: Health Informatics Journal
Mari Siegel
No abstract text is available yet for this article.
October 18, 2016: Journal of Emergency Medicine
Emma Nicholson, Tara Murphy, Philip Larkin, Charles Normand, Suzanne Guerin
BACKGROUND: Research networks that facilitate collaborative research are increasing both regionally and globally and such collaborations contribute greatly to knowledge transfer particularly in health research. The Palliative Care Research Network is an Irish-based network that seeks to create opportunities and engender a collaborative environment to encourage innovative research that is relevant for policy and practice. The current review outlines a methodology to identify cross-cutting messages to identify how dissemination outputs can be optimized to ensure that key messages from this research reaches all knowledge users...
October 21, 2016: BMC Research Notes
Pierre Cornillon, Sébastien Loiseau, Bruno Aublet-Cuvelier, Virginie Guastella
BACKGROUND: Patients under palliative care and in hospital-at-home services are frequently transferred to emergency departments. We set out to identify the reasons for these presentations to determine the proportion that might be avoidable. METHODS: We conducted a retrospective study by assessment of patient files. We studied admissions to four emergency departments in an area of France (Puy-de-Dôme) between September 2011 and August 2013. Reasons for transfer and diagnostic conclusion by emergency doctors were noted...
October 21, 2016: BMC Palliative Care
David Picker, Maria Dans, Kevin Heard, Thomas Bailey, Yixin Chen, Chenyang Lu, Marin H Kollef
OBJECTIVE: To determine whether an Early Warning System could identify patients wishing to focus on palliative care measures. DESIGN: Prospective, randomized, pilot study. SETTING: Barnes-Jewish Hospital, Saint Louis, MO (January 15, 2015, to December 12, 2015). PATIENTS: A total of 206 patients; 89 intervention (43.2%) and 117 controls (56.8%). INTERVENTIONS: Palliative care in high-risk patients targeted by an Early Warning System...
October 20, 2016: Critical Care Medicine
Caterina Magnani, Diana Giannarelli, Giuseppe Casale
OBJECTIVES: To assess the prevalence of breakthrough pain (BTP) provoked by 6 common procedures in patients with advanced disease. METHODS: A prospective, cross-sectional, multicenter, national study was performed in 23 palliative care units in Italy. Patients were recruited if they were undergoing one of the following procedures as part of normal care: turning, personal hygiene care, transfer from bed to chair, bladder catheterization, pressure ulcer care, and subcutaneous drug administration...
October 20, 2016: Clinical Journal of Pain
Olga Tursunov, Nathan I Cherny, Freda DeKeyser Ganz
PURPOSE/OBJECTIVES: To describe the experience of family members of patients receiving palliative sedation at the initiation of treatment and after the patient has died and to compare these experiences over time.
. DESIGN: Descriptive comparative study.
. SETTING: Oncology ward at Shaare Zedek Medical Center in Jerusalem, Israel.
. SAMPLE: A convenience sample of 34 family members of dying patients receiving palliative sedation...
November 1, 2016: Oncology Nursing Forum
Stephen R Connor, Julia Downing, Joan Marston
CONTEXT: The need for children's palliative care (CPC) globally is unknown. In order to understand the scope of the need and to advocate to meet it, more accurate estimates are needed. OBJECTIVES: To create an accurate global estimate of the worldwide need for CPC based on a representative sample of countries from all regions of the world and all World Bank income groups. METHODS: This work builds on previously published methods developed by the International Children's Palliative Care Network, UNICEF, and WHO and tested in three African countries...
October 17, 2016: Journal of Pain and Symptom Management
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