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Pediatric palliative care

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https://www.readbyqxmd.com/read/29333821/opioid-treatment-for-mixed-pain-in-pediatric-patients-assisted-by-the-palliative-care-team-five-years-of-experience
#1
María L Yazde Puleio, Karina V Gómez, Ana Majdalani, Vilma Pigliapoco, Gisella Santos Chocler
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is moderate to severe, a strong opioid should be administered and, when this is the case, morphine is the drug of choice. If morphine is ineffective or causes intolerable adverse effects, opioid rotation is recommended. Our objective was to describe the drug management for mixed pain used in patients assisted by the Palliative Care team of Hospital General de Niños Pedro de Elizalde between August 2011 and September 2015...
February 1, 2018: Archivos Argentinos de Pediatría
https://www.readbyqxmd.com/read/29316802/it-s-all-about-communication-a-mixed-methods-approach-to-collaboration-between-volunteers-and-staff-in-pediatric-palliative-care
#2
Dorothee Meyer, Pia Schmidt, Boris Zernikow, Julia Wager
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration...
January 1, 2018: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29313768/from-longshot-to-fantasy-obligations-to-pediatric-patients-and-families-when-last-ditch-medical-efforts-fail
#3
Elliott Mark Weiss, Autumn Fiester
Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from longshot to fantasy using two pediatric cases...
January 2018: American Journal of Bioethics: AJOB
https://www.readbyqxmd.com/read/29313744/dyspnea-in-children-with-life-threatening-and-life-limiting-complex-chronic-conditions
#4
Lucas Pieper, Boris Zernikow, Ross Drake, Michael Frosch, Michael Printz, Julia Wager
BACKGROUND: Dyspnea is one of the most frequent symptoms in children with complex chronic conditions (CCC) requiring palliative care. Although it is a subject of high importance, there has been little research on dyspnea in critically ill children. OBJECTIVE: The purpose of this systematic review was to investigate the prevalence and causes of dyspnea in children with CCC and to identify the current state of research on the measurements, treatments, and the evaluation of therapeutic interventions...
January 9, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29304799/study-protocol-evaluation-of-specialized-outpatient-palliative-care-sopc-in-the-german-state-of-hesse-elsah-study-work-package-ii-palliative-care-for-pediatric-patients
#5
Lisa-R Ulrich, Dania Gruber, Michaela Hach, Stefan Boesner, Joerg Haasenritter, Katrin Kuss, Hannah Seipp, Ferdinand M Gerlach, Antje Erler
BACKGROUND: In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients...
January 5, 2018: BMC Palliative Care
https://www.readbyqxmd.com/read/29303424/seizing-the-opportunity-exploring-barriers-to-use-of-transmucosal-midazolam-in-hospice-patients
#6
Samuel J Perna, James M Rhinewalt, Erin R Currie
BACKGROUND: Status epilepticus seizures are distressing events for hospice and palliative care patients. Currently, rectal diazepam is the only abortive therapy approved by the U.S. Food and Drug Administration for seizures occurring out of hospital. However, transmucosal (buccal and intranasal) midazolam hydrochloride is a less expensive, equally effective, and a more socially acceptable alternative. OBJECTIVE: To explore the use of transmucosal midazolam in out-of-hospital hospice patients in the State of Alabama...
January 5, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29300339/a-retrospective-review-of-resuscitation-planning-at-a-children-s-hospital
#7
Jean Kelly, Jo Ritchie, Leigh Donovan, Carol Graham, Anthony Herbert
Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in paediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children's Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented RP. This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (Pediatric Intensive Care Unit or home) influenced the development of resuscitation plans...
January 4, 2018: Children
https://www.readbyqxmd.com/read/29300097/parameter-uncertainty-in-structural-equation-models-confidence-sets-and-fungible-estimates
#8
Jolynn Pek, Hao Wu
Current concerns regarding the dependability of psychological findings call for methodological developments to provide additional evidence in support of scientific conclusions. This article highlights the value and importance of two distinct kinds of parameter uncertainty, which are quantified by confidence sets (CSs) and fungible parameter estimates (FPEs; Lee, MacCallum, & Browne, 2017); both provide essential information regarding the defensibility of scientific findings. Using the structural equation model, we introduce a general perturbation framework based on the likelihood function that unifies CSs and FPEs and sheds new light on the conceptual distinctions between them...
January 4, 2018: Psychological Methods
https://www.readbyqxmd.com/read/29299618/heart-transplantation-in-children-with-turner-syndrome-analysis-of-a-linked-dataset
#9
Joshua D Chew, Jonathan H Soslow, Cary Thurm, Matt Hall, Debra A Dodd, Brian Feingold, Jill Simmons, Justin Godown
Turner syndrome (TS) patients with hypoplastic left heart syndrome (HLHS) have poor single ventricle palliation outcomes; therefore, consideration of other potential management strategies is important. Little is known about heart transplantation (HTx) in this group, as standard HTx databases do not allow for identification of TS. This study describes experiences and outcomes of HTx in TS using a unique linkage between the Scientific Registry of Transplant Recipients and the Pediatric Health Information System databases...
January 3, 2018: Pediatric Cardiology
https://www.readbyqxmd.com/read/29297749/life-limiting-conditions-at-a-university-pediatric-tertiary-care-center-a-cross-sectional-study
#10
Annemarie Bösch, Julia Wager, Boris Zernikow, Ralf Thalemann, Heidi Frenzel, Heiko Krude, Tobias Reindl
BACKGROUND: The increasing number of children with life-threatening and life-limiting conditions requires an individualized approach and additional supportive care in hospitals. However, these patients' characteristics and their prevalence in a pediatric tertiary hospital setting have not been systematically analyzed. OBJECTIVE: This study aimed to determine the proportion of hospitalized children who are receiving care for life-threatening diseases with feasible curative treatments and for life-limiting diseases (LLDs) with inevitable premature death as opposed to care for acute or chronic diseases; additionally, it sought to compare patient characteristics, clinical features, and symptoms within these subgroups...
January 3, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29288879/development-and-assessment-of-a-measure-of-parent-and-child-needs-in-pediatric-palliative-care
#11
James P Donnelly, Kim Downing, Jason Cloen, Patricia Fragen, Alyssa W Gupton, Jen Misasi, Kelly Michelson
CONTEXT: Pediatric palliative care has no evidence-based needs assessment measure. The Parent and Child Needs Survey (PCNeeds) is a new instrument designed to assess the needs of children in palliative care, including children receiving end-of-life care, and their families. OBJECTIVES: This study examines the psychometrics of and respondents' perceptions about the PCNeeds. METHODS: Parents of children in four outpatient pediatric palliative care programs completed the PCNeeds and the World Health Organization Quality of Life-Brief tool (WHOQOL-BREF)...
December 27, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29273480/high-ionized-calcium-concentration-is-associated-with-prolonged-length-of-stay-in-the-intensive-care-unit-for-postoperative-pediatric-cardiac-patients
#12
Satoshi Kimura, Tatsuo Iwasaki, Katsunori Oe, Kazuyoshi Shimizu, Tomohiko Suemori, Tomoyuki Kanazawa, Naohiro Shioji, Yasutoshi Kuroe, Yuto Matsuoka, Hiroshi Morimatsu
OBJECTIVE: There has been controversy regarding the beneficial effects of calcium on myocardial contractility and the harmful effects on myocardial cells, especially in children. The aim of this study was to investigate an association between ionized calcium concentration (iCa) and outcomes for pediatric patients after cardiac surgery. DESIGN: A retrospective, single-center study from May 2013 to December 2014. SETTING: Referral high-volume pediatric cardiac center in a tertiary teaching hospital...
November 8, 2017: Journal of Cardiothoracic and Vascular Anesthesia
https://www.readbyqxmd.com/read/29223416/cost-variation-across-centers-for-the-norwood-operation
#13
Kimberly E McHugh, Sara K Pasquali, Matthew A Hall, Mark A Scheurer
BACKGROUND: The Norwood operation is associated with high health care utilization, and prior studies reported substantial variability in Norwood costs across centers. However, specific factors driving this cost variation are unclear. We assessed center variability in Norwood costs and underlying mechanisms in a multicenter cohort. METHODS: Clinical data from the Pediatric Heart Network Single Ventricle Reconstruction trial were linked with cost data from the Children's Hospital Association Inpatient Essentials database...
December 6, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/29218773/illness-and-end-of-life-experiences-of-children-with-cancer-who-receive-palliative-care
#14
Erica C Kaye, Courtney A Gushue, Samantha DeMarsh, Jonathan Jerkins, April Sykes, Zhaohua Lu, Jennifer M Snaman, Lindsay Blazin, Liza-Marie Johnson, Deena R Levine, R Ray Morrison, Justin N Baker
BACKGROUND: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). METHODS: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. RESULTS: The majority of pediatric palliative oncology patients received experimental therapy (79...
December 8, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29215810/pediatric-deaths-attributed-to-complex-chronic-conditions-over-10-years-in-korea-evidence-for-the-need-to-provide-pediatric-palliative-care
#15
Min Sun Kim, Nam Gu Lim, Hyun Joo Kim, Chohee Kim, Jin Yong Lee
BACKGROUND: Pediatric palliative care (PPC) is the active total care of children suffering from life-threatening illnesses. Palliative care includes symptom management, psychosocial support, and end-of-life care. Despite significant advances in disease diagnosis and treatment, resources for PPC of children with serious illnesses are limited in Korea. This study aimed to investigate the scale, time trends, disease composition, regional distribution, and unmet needs of children dying from complex chronic conditions (CCCs)...
January 1, 2018: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/29206683/surprised-by-benefit-in-pediatric-palliative-care-research
#16
Meaghann S Weaver, Cynthia J Bell, Jessica L Diver, Shana Jacobs, Maureen E Lyon, Kim Mooney-Doyle, Amy R Newman, Julia Slutsman, Pamela S Hinds
No abstract text is available yet for this article.
January 2018: Cancer Nursing
https://www.readbyqxmd.com/read/29189353/pediatric-palliative-oncology-the-state-of-the-science-and-art-of-caring-for-children-with-cancer
#17
Jennifer M Snaman, Erica C Kaye, Justin N Baker, Joanne Wolfe
PURPOSE OF REVIEW: Pediatric palliative oncology (PPO) is an emerging field that integrates the principles of palliative care early into the illness trajectory of children with cancer. PPO providers work with interdisciplinary clinicians to provide optimal medical and psychosocial care to children with cancer and their families. Ongoing advances in the field of pediatric oncology, including new treatment options for progressive cancers, necessitate the early integration of palliative care tenets including holistic care, high-quality communication, and assessment and management of refractory symptoms...
November 17, 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/29179572/when-and-why-do-neonatal-and-pediatric-critical-care-physicians-consult-palliative-care
#18
Claire A Richards, Helene Starks, M Rebecca O'Connor, Erica Bourget, Taryn Lindhorst, Ross Hays, Ardith Z Doorenbos
BACKGROUND: Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. OBJECTIVE: To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29173030/a-summary-of-pediatric-palliative-care-team-structure-and-services-as-reported-by-centers-caring-for-children-with-cancer
#19
Meaghann S Weaver, Abby R Rosenberg, Julia Tager, Christopher S Wichman, Lori Wiener
BACKGROUND: Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. OBJECTIVE: To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. METHODS: Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup...
November 27, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29163800/end-of-life-care-in-children-with-hematologic-malignancies
#20
Jessica I Hoell, Jens Warfsmann, Stefan Balzer, Arndt Borkhardt, Gisela Janssen, Michaela Kuhlen
Introduction: Hematologic malignancies (HM) represent the most common neoplasms in childhood. Despite improved overall survival rates, they are still a major contributor to cancer death in children. Aims: To determine the proportion of children with HM in pediatric palliative care (PPC) and to identify the clinical characteristics and symptoms in comparison to children with extracranial solid tumors (non HM patients). Patients and Methods: This study was conducted as a single-center retrospective cohort study of patients in the care of a large specialized PPC team...
October 27, 2017: Oncotarget
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