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https://www.readbyqxmd.com/read/28944533/parents-spend-an-average-of-nine-hours-a-day-providing-palliative-care-for-children-at-home-and-need-to-maintain-an-average-of-five-life-saving-devices
#1
P Lazzarin, B Schiavon, L Brugnaro, F Benini
AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. RESULTS: The children had a mean age of 6...
September 25, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28942908/integrating-function-directed-treatments-into-palliative-care
#2
REVIEW
Andrea L Cheville, Melissa Morrow, Sean Robinson Smith, Jeffrey R Basford
The growing acceptance of palliative care has created opportunities to increase the use of rehabilitation services among populations with advanced disease, particularly those with cancer. Broader delivery has been impeded by the lack of a shared definition for palliative rehabilitation and a mismatch between patient needs and established rehabilitation service delivery models. We propose the definition that, in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of patients who have serious and often incurable illnesses in contexts marked by intense and dynamic symptoms, psychological stress, and medical morbidity to realize potentially time-limited goals...
September 2017: PM & R: the Journal of Injury, Function, and Rehabilitation
https://www.readbyqxmd.com/read/28941964/unmet-palliative-care-needs-among-patients-with-end-stage-kidney-disease-a-national-registry-study-about-the-last-week-of-life
#3
Lena Axelsson, Anette Alvariza, Jenny Lindberg, Joakim Öhlén, Cecilia Håkanson, Helene Reimertz, Carl-Johan Fürst, Kristofer Årestedt
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 (ICD-10-SE; N18...
September 20, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28941298/symptom-management-and-psychological-support-for-families-are-the-cornerstones-of-end-of-life-care-for-children-with-spinal-muscular-atrophy-type-1
#4
Chiara Di Pede, Caterina Agosto, Valentina De Tommasi, Alessandra De Gregorio, Franca Benini
AIM: This study described end-of-life care for children affected by spinal muscular atrophy type 1 (SMA1), which is characterised by progressive muscle weakness and develops in the first six months of life. METHODS: We retrospectively analysed 17 children (13 boys) who attended the University of Padua's paediatric palliative care centre in Italy from March 2000 to March 2015. All the children received supportive care without proactive respiratory intervention to prolong survival...
September 23, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28941165/combined-heart-liver-transplantation-for-failing-fontan-circulation-in-a-late-survivor-with-single-ventricle-physiology
#5
Phuoc Duong, Louise Coats, John O'Sullivan, David Crossland, Beate Haugk, Sonya V Babu-Narayan, Jennifer Keegan, Mark Hudson, Gareth Parry, Derek Manas, Asif Hasan
Management of adults with failing Fontan physiology poses many challenges, especially as transplantation offers the only realistic alternative to palliative care. We present the first combined heart and liver transplant performed in Europe, for a late survivor of single ventricle palliation with the Fontan circulation. In addition to the conventional medical and surgical challenges posed, we highlight the management of the associated multi-organ failure with focus on the liver and novel strategies for assessment and optimization...
September 21, 2017: ESC Heart Failure
https://www.readbyqxmd.com/read/28940900/successful-control-of-pain-from-malignant-psoas-syndrome-by-spinal-opioid-with-local-anesthetic-agents
#6
Takashi Yamaguchi, Katsuyuki Katayama, Mina Matsumoto, Yoshifumi Sato, Noriko Nakayama, Ko Hisahara
BACKGROUNDS: Malignant psoas syndrome (MPS) is a rare but distressing pain syndrome observed in advanced cancer patients. Pain due to MPS is often refractory to multi-modal analgesic treatment, including opioid analgesics. As only one case demonstrating the efficacy of neuraxial analgesia in managing pain due to MPS has been reported, its role in MPS remains uncertain. CASES: We present three cases demonstrating the successful management of pain due to MPS using spinal opioids with local anesthetic agents...
September 23, 2017: Pain Practice: the Official Journal of World Institute of Pain
https://www.readbyqxmd.com/read/28938102/self-management-support-at-the-end-of-life-patients-carers-and-professionals-perspectives-on-managing-medicines
#7
N Campling, A Richardson, M Mulvey, M Bennett, B Johnston, S Latter
BACKGROUND: Pain is a frequently reported symptom by patients approaching the end of life and well-established that patients and carers hold fears relating to opioids, and experience side effects related to their use. The management of medicines is intrinsic to achieving effective pain relief. The concept of self-management support whilst well characterised in the context of chronic illness has not been elaborated with respect to end of life care. AIM: To identify patient, carer and professional views on the concept of self-management support at end of life, specifically in relation to analgesia and related medicines (for side-effect management) in order to describe, characterise and explain self-management support in this context...
September 6, 2017: International Journal of Nursing Studies
https://www.readbyqxmd.com/read/28937333/provider-prioritized-domains-of-quality-in-pediatric-home-based-hospice-and-palliative-care-a-study-of-the-ohio-pediatric-palliative-care-and-end-of-life-network
#8
Rachel Thienprayoon, Melissa San Julian Mark, Daniel Grossoehme
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC)...
September 22, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28937317/what-is-important-to-patients-in-palliative-care-a-scoping-review-of-the-patient-s-perspective
#9
Helen von Post, Petra Wagman
BACKGROUND: The research conducted in palliative care is often medically oriented. There are few studies clarifying the patient's preferences, priorities and desires in palliative care. The occupational therapy research conducted mostly concerns occupational therapy interventions based on the profession's experiences. Further knowledge is needed regarding what patients in palliative care want to prioritize. AIM: The aim was to describe what patients in palliative care describe as important at the end of life...
September 22, 2017: Scandinavian Journal of Occupational Therapy
https://www.readbyqxmd.com/read/28936558/how-do-treatment-aims-in-the-last-phase-of-life-relate-to-hospitalizations-and-hospital-mortality-a-mortality-follow-back-study-of-dutch-patients-with-five-types-of-cancer
#10
Mariska Oosterveld-Vlug, Gé Donker, Femke Atsma, Linda Brom, Yvonne de Man, Stef Groenewoud, Bregje Onwuteaka-Philipsen
PURPOSE: The purpose of this study is to describe and compare the relation between treatment aims, hospitalizations, and hospital mortality for Dutch patients who died from lung, colorectal, breast, prostate, or pancreatic cancer. METHODS: A mortality follow-back study was conducted within a sentinel network of Dutch general practitioners (GPs), who recorded the end-of-life care of 691 patients who died from one of the abovementioned cancer types between 2009 and 2015...
September 22, 2017: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/28936438/unusual-case-of-spindle-cell-sarcoma-metastases-to-right-ventricle-a-case-report-and-a-literature-review
#11
Rezarta Frakulli, Silvia Cammelli, Fabrizio Salvi, Damiano Balestrini, Antonella Baldissera, Claudio Degli Esposti, Ombretta Martelli, Massimo Abate, Anna Piaoli, Stefano Ferrari, Alessio G Morganti, Giovanni Piero Frezza
Cardiac metastases from sarcoma are uncommon. Due to their rarity there is not a standard of care. However, complete cardiac metastases resection is the best option but most of patients has widespread disease. In these patients palliative radiotherapy (RT) might improve symptoms and prevent further cardiac function decline. Here we present the case of a symptomatic 30-year-old woman with spindle cell sarcoma metastasis of right ventriculum and widespread disease. The patient received radiotherapy to the heart with palliative intent...
September 2017: Annals of Translational Medicine
https://www.readbyqxmd.com/read/28936153/management-and-treatment-recommendations-for-world-health-organization-grade-iii-and-iv-gliomas
#12
REVIEW
Abdullah K Altwairgi, Shanker Raja, Mohammed Manzoor, Sadeq Aldandan, Eyad Alsaeed, Ali Balbaid, Hussain Alhussain, Yassir Orz, Ahmed Lary, Abdullah A Alsharm
The treatment recommendations provided in this manuscript are intended to serve as a knowledge base for clinicians and health personals involved in treating patients with high-grade malignant glioma. In newly diagnosed patients, complete resection or biopsy is required for histological characterization of the tumor, which in turn is essential to decide the treatment strategy. In patients with good or borderline performance score, radiotherapy (RT), and chemotherapy are the preferred management. In patients with poor performance score, RT with best possible supportive care is the mainstay of the management...
July 2017: International Journal of Health Sciences
https://www.readbyqxmd.com/read/28935629/paediatric-advance-care-planning-survey-a-cross-sectional-examination-of-congruence-and-discordance-between-adolescents-with-hiv-aids-and-their-families
#13
Maureen E Lyon, Ronald H Dallas, Patricia A Garvie, Megan L Wilkins, Ana Garcia, Yao Iris Cheng, Jichuan Wang
OBJECTIVES: To identify patient-reported paediatric advance care planning (pACP) needs of adolescents living with HIV and to examine the congruence with their family's perception of their needs. METHODS: A cross-sectional survey among six paediatric hospital-based outpatient HIV specialty clinics. Participants included 48 adolescent/family dyads (n=96 participants) within a larger study facilitating pACP. The main outcome measure was the Lyon Advance Care Planning Survey - Adolescent and Surrogate Versions-Revised...
September 21, 2017: BMJ Supportive & Palliative Care
https://www.readbyqxmd.com/read/28935132/acute-leukemia-patients-needs-qualitative-findings-and-opportunities-for-early-palliative-care
#14
Nathan A Boucher, Kimberly S Johnson, Thomas W LeBlanc
BACKGROUND AND OBJECTIVE: Patients with acute leukemias likely have needs that palliative care can respond to, yet little is known about specific challenges they face, particularly during active treatment. We examined acute myeloid leukemia (AML) patients' expressed challenges and supports following intensive induction chemotherapy. We aimed to understand opportunities for palliative care interventions in this population. METHODS: A qualitative study of AML patients with high-risk disease at Duke University Hospital, Durham, NC...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28935131/which-research-questions-are-important-for-the-bereaved-families-of-palliative-care-cancer-patients-a-nationwide-survey
#15
Akihiro Sakashita, Tatsuya Morita, Megumi Kishino, Maho Aoyama, Yoshiyuki Kizawa, Satoru Tsuneto, Yasuo Shima, Mitsunori Miyashita
CONTEXT: Bereaved family members are present from diagnosis to the end of life and can look back and evaluate the experience; additionally, the family itself is also an important subject in the care of the patient. Therefore, while it is essential to determine the priority research issues from the viewpoint of the patients and health care workers, it is also crucial to know the important research themes from the viewpoint of the bereaved family members. OBJECTIVES: The purpose of this study was to identify research priorities for palliative care in Japan, based on the viewpoint of bereaved family members...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28935130/determining-palliative-care-penetration-rates-in-the-acute-care-setting
#16
Heidi Gruhler, April Krutka, Hannah Luetke-Stahlman, Emmie Gardner
CONTEXT: Intermountain Healthcare, in collaboration with Cerner Corporation, developed a hospital-based electronic palliative care algorithm to improve identification of patients who would benefit from palliative care services. METHODS: This study used a mixed-methods non-randomized retrospective study design. Three 30-day iterations of clinical data were analyzed for patients identified by the electronic algorithm. During the second and third 30-day iteration, palliative care clinicians conducted weekly chart reviews for identified patients and determined whether the patients were appropriate for a palliative care consult...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28935129/environmental-design-for-end-of-life-care-an-integrative-review-on-improving-quality-of-life-and-managing-symptoms-for-patients-in-institutional-settings
#17
REVIEW
Rana Sagha Zadeh, Paul Eshelman, Judith Setla, Laura Kennedy, Emily Hon, Aleksa Basara
CONTEXT: The environment in which end-of-life care is delivered can support or detract from the physical, psychological, social, and spiritual needs of patients, their families, and their caretakers. OBJECTIVES: This review aims to organize and analyze the existing evidence related to environmental design factors that improve the quality of life and total well-being of people involved in end-of-life care and to clarify directions for future research. METHOD: This integrated literature review synthesized and summarized research evidence from the fields of medicine, environmental psychology, nursing, palliative care, architecture, interior design, and evidence-based design...
September 18, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28934324/the-impact-of-community-based-palliative-care-on-acute-hospital-use-in-the-last-year-of-life-is-modified-by-time-to-death-age-and-underlying-cause-of-death-a-population-based-retrospective-cohort-study
#18
Katrina Spilsbury, Lorna Rosenwax, Glenn Arendts, James B Semmens
OBJECTIVE: Community-based palliative care is known to be associated with reduced acute care health service use. Our objective was to investigate how reduced acute care hospital use in the last year of life varied temporally and by patient factors. METHODS: A retrospective cohort study of the last year of life of 12,763 Western Australians who died from cancer or one of seven non-cancer conditions. Outcome measures were rates of hospital admissions and mean length of hospital stays...
2017: PloS One
https://www.readbyqxmd.com/read/28934074/routine-assessment-of-unmet-needs-in-individuals-with-advanced-cancer-and-their-caregivers-a-qualitative-study-of-the-palliative-care-needs-assessment-tool-pc-nat
#19
Sylvie Lambert, Afaf Girgis, Thomas Bellamy
PURPOSE: To examine (a) approaches used by oncologists to administer the Palliative Care Needs Assessment Tool (PC-NAT) in consultations with patients with advanced cancer and their caregivers, (b) potential of this tool to facilitate discussion of psychosocial issues, and (c) whether use of the tool alters the length of consultations. DESIGN: A qualitative analysis was undertaken of audiotaped, outpatient consultations. SAMPLE AND METHODS: 20 individuals with advanced cancer and their caregivers who participated in an interrupted time series study of the impact of the systematic utilisation of the Palliative Care Needs Assessment Tool (PC-NAT) had a total of 48 consultations audiotaped...
September 21, 2017: Journal of Psychosocial Oncology
https://www.readbyqxmd.com/read/28933997/the-comfort-app-prototype-introducing-a-web-based-application-for-monitoring-comfort-in-palliative-care
#20
Sara Pinto, Filipe Almeida, Sílvia Caldeira, José Carlos Martins
AIM: To introduce a web-based application for monitoring comfort in patients receiving palliative care. METHODS: Multi-phase electronic application development process that concluded with a pilot design to assess the feasibility and acceptability of the developed app (n=7 patients). RESULTS: The app is compatible with Android, iOS and Windows. The results from phases I and II provided the knowledge about monitoring comfort. In phase III, five experts analysed the content of the app...
September 2, 2017: International Journal of Palliative Nursing
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