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Pediatric palliative care

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https://www.readbyqxmd.com/read/28103764/multimodal-pediatric-pain-management-part-2
#1
Stefan J Friedrichsdorf
Dr Stefan Friedrichsdorf speaks to Commissioning Editor Jade Parker: Stefan Friedrichsdorf, MD, is medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children's Hospitals and Clinics of Minnesota in Minneapolis/St Paul, MN, USA, home to one of the largest and most comprehensive programs of its kind in the country. The pain and palliative care program is devoted to control acute, chronic/complex and procedural pain for inpatients and outpatients in close collaboration with all pediatric subspecialties at Children's Minnesota...
January 20, 2017: Pain Management
https://www.readbyqxmd.com/read/28103457/-congenital-heart-disease-in-children-with-down-syndrome-what-has-changed-in-the-last-three-decades
#2
Filipa Mestre Dias, Susana Cordeiro, Isabel Menezes, Graça Nogueira, Ana Teixeira, Marta Marques, Miguel Abecasis, Rui Anjos
INTRODUCTION: The prevalence of Down syndrome has increased in the last 30 years; 55% of these children have congenital heart disease. MATERIAL AND METHODS: A retrospective longitudinal cohort study; clinical data from 1982 to 2013 databases with the diagnosis of Down syndrome or trisomy 21 in a reference hospital in pediatric cardiology and cardiac surgery. OBJECTIVE: to assess the progress in the last three decades of cardiological care given to children with Down syndrome and congenital heart disease...
October 2016: Acta Médica Portuguesa
https://www.readbyqxmd.com/read/28103131/pediatric-palliative-care-needs-assessments-from-paper-forms-to-actionable-patient-care
#3
Meaghann Shaw Weaver, Denice Schroeder, Christopher Wichman, Sue Bace, Catherine Vail, Andrew Macfadyen
No abstract text is available yet for this article.
January 19, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28077099/a-prospective-study-on-the-characteristics-and-subjects-of-pediatric-palliative-care-case-management-provided-by-a-hospital-based-palliative-care-team
#4
Charissa T Jagt-van Kampen, Marijke C Kars, Derk A Colenbrander, Diederik K Bosman, Martha A Grootenhuis, Huib N Caron, Antoinette Y N Schouten-van Meeteren
BACKGROUND: Case management is a subject of interest within pediatric palliative care. Detailed descriptions of the content of this type of case management are lacking. We aim to describe the contents of care provided, utilization of different disciplines, and times of usage of a pediatric palliative care case management program compared for patients with malignant disease (MD) and non-malignant disease (NMD). METHODS: A three-month prospective study, with questionnaires filled in by members of a pediatric palliative care team (PPCT) for each contact with parents...
January 12, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/28072917/a-provider-based-survey-to-assess-bereavement-care-knowledge-attitudes-and-practices-in-pediatric-oncologists
#5
Jasmin Jensen, Cindy Weng, Holly L Spraker-Perlman
BACKGROUND: Bereavement support is a core tenet of palliative care that may prove difficult for clinicians as it is time-consuming, emotionally charged, and not emphasized in pediatrics training. This project is intended to describe the opinions, knowledge, and practice of bereavement care among pediatric oncologists to identify gaps in clinical care. PROCEDURES: An internet-based survey instrument was pilot tested, refined, and distributed to pediatric oncologists in the United States...
January 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28065197/aligning-guidelines-and-medical-practice-literature-review-on-pediatric-palliative-care-guidelines
#6
Eva De Clercq, Michael Rost, Nadia Pacurari, Bernice S Elger, Tenzin Wangmo
OBJECTIVE: Palliative care for children is becoming an important subspecialty of healthcare. Although concurrent administration of curative and palliative care is recommended, timely referral to pediatric palliative care (PPC) services remains problematic. This literature review aims to identify barriers and recommendations for proper implementation of palliative care for children through the looking glass of PPC guidelines. METHOD: To identify studies on PPC guidelines, five databases were searched systematically between 1960 and 2015: Scopus, PubMed, PsycINFO, the Web of Science, and CINAHL...
January 9, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28062351/training-the-workforce-description-of-a-longitudinal-interdisciplinary-education-and-mentoring-program-in-palliative-care
#7
Stacie Levine, Sean O'Mahony, Aliza Baron, Aziz Ansari, Catherine Deamant, Joel Frader, Ileana Leyva, Michael Marschke, Michael Preodor
CONTEXT: The rapid increase in demand for palliative care (PC) services has led to concerns regarding workforce shortages and threats to the resiliency of PC teams. OBJECTIVES: To describe the development, implementation, and evaluation of a regional interdisciplinary training program in PC. METHODS: Thirty nurse and physician "fellows" representing 22 health systems across the Chicago region participated in a two-year PC training program...
January 3, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28062335/productivity-in-pediatric-palliative-care-measuring-and-monitoring-an-elusive-metric
#8
Erica C Kaye, Zachary R Abramson, Jennifer M Snaman, Sarah E Friebert, Justin N Baker
CONTEXT: Workforce productivity is poorly defined in healthcare. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable...
January 3, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28042078/home-based-palliative-care-for-children-with-incurable-cancer-long-term-perspectives-of-and-impact-on-general-practitioners
#9
Ivana M M van der Geest, Patrick J E Bindels, Saskia M F Pluijm, Erna M C Michiels, Agnes van der Heide, Rob Pieters, Anne-Sophie E Darlington, Marry M van den Heuvel-Eibrink
CONTEXT: Although a large percentage of children with advanced-stage cancer die at home, remarkably little information is available regarding the experience of general practitioners (GPs) with respect to providing home-based palliative care to children with incurable cancer. OBJECTIVES: To explore the perspectives of GPs who care for children with advanced-stage cancer in a home-based setting. METHODS: In this cross-sectional study, 144 GPs who provided home-based palliative care to 150 children with incurable cancer from 2001 through 2010 were invited to complete a questionnaire addressing their perspectives regarding: 1) symptom management, 2) collaboration with other health care professionals, 3) the child's death and care after death and 4) impact of having provided palliative care, scored on distress thermometer (range 0-10)...
December 29, 2016: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28042068/empowering-bereaved-parents-through-the-development-of-a-comprehensive-bereavement-program
#10
Jennifer M Snaman, Erica C Kaye, Deena R Levine, Brittany Cochran, Robin Wilcox, Charlene K Sparrow, Nancy Noyes, Lisa Clark, Wendy Avery, Justin N Baker
Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help healthcare providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child...
December 29, 2016: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28034356/improving-cancer-care-for-children-in-the-developing-world-challenges-and-strategies
#11
Zakiya Al Lamki
Cancer is a global health problem particularly in developing countries where the burden of cancer is ever increasing and claiming the lives of about 100,000 children under the age of 15 years every year. Majority of these occur in the Low and Middle Income Countries (LMICs) where 90% of world children live. Contributing factors to this trend is the reduction of communicable diseases and emergence of new infections, improvement of nutrition and socio-economic conditions, industrialization and urbanization. However, due to its complexity, childhood cancer is given the least priority by the governments' funding...
December 30, 2016: Current Pediatric Reviews
https://www.readbyqxmd.com/read/28025426/life-and-medical-ethics-in-pediatric-neurosurgery
#12
Mami Yamasaki
Ethical issues in the field of pediatric neurosurgery, including prenatal diagnosis, palliative care for children with an intractable serious disease, and medical neglect, are discussed. An important role of medicine is to offer every possible treatment to a patient. However, it also is the responsibility of medicine to be conscious of its limitations, and to help parents love and respect a child who suffers from an incurable disease. When dealing with cases of medical neglect and palliative care for an incurable disease, it is critical to diagnose the child's condition accurately and evaluate the outcome...
December 26, 2016: Neurologia Medico-chirurgica
https://www.readbyqxmd.com/read/28024994/teaching-the-art-of-difficult-family-conversations
#13
Rita Dadiz, Michael L Spear, Erin Denney-Koelsch
CONTEXT: Difficult family conversations are a challenge for even the most seasoned clinicians. Teaching the skills of successful communication between providers, family members, and patients is a vital component of medical education. However, traditional teaching methods using didactics and expert role modeling are often inadequate. OBJECTIVES: The train-the-educator workshop aimed to teach educators how to create and conduct workshops on facilitating difficult family conversations that target their own learners' needs...
February 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28019075/surviving-with-trisomy-13-provider-and-parent-perspectives-and-the-role-of-the-pediatric-palliative-care-program
#14
Duc Chung, Kristina Haynes, Russell Haynes
Trisomy 13 typically denotes an overall poor prognosis in the setting of multisystem anomalies. Through a provider and parent perspective, this case illustrates the benefit of hope, communication, and teamwork through the integration of a palliative care team in the care of a medically complex child with trisomy 13, resulting in enhance survival and perceived quality of life for patient and family. © 2016 Wiley Periodicals, Inc.
December 25, 2016: American Journal of Medical Genetics. Part A
https://www.readbyqxmd.com/read/28018868/pediatric-palliative-care-in-canada-in-2012-a-cross-sectional-descriptive-study
#15
Kimberley Widger, Dawn Davies, Adam Rapoport, Christina Vadeboncoeur, Stephen Liben, Amrita Sarpal, Simone Stenekes, Claude Cyr, Lysanne Daoust, Marie-Claude Grégoire, Marli Robertson, Heather Hodgson-Viden, Julie Laflamme, Harold Siden
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis...
October 2016: CMAJ Open
https://www.readbyqxmd.com/read/28007511/-neonatal-palliative-care-at-home-contribution-of-the-regional-pediatric-palliative-care-team
#16
N Cojean, C Strub, P Kuhn, L Calvel
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support...
December 19, 2016: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28001471/pediatric-cancer-patients-important-end-of-life-issues-including-quality-of-life-a-survey-of-pediatric-oncologists-and-nurses-in-japan
#17
Yuko Nagoya, Mitsunori Miyashita, Hitoshi Shiwaku
BACKGROUND: Research into the key themes and concepts of quality of life (QOL) relevant to the end-of-life (EOL) care of pediatric cancer patients in the Japanese context is imperative. OBJECTIVE: This study aimed at identifying the key items and constructive concepts of QOL at EOL of pediatric cancer patients. DESIGN: In 2015, pediatricians and nurses were recruited from 163 pediatric oncology treatment facilities in Japan. The questionnaire was developed on the basis of a previous qualitative study...
December 21, 2016: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28000411/the-role-of-radiation-therapy-in-palliative-care-of-children-with-advanced-cancer-clinical-outcomes-and-patterns-of-care
#18
Sumeeta Varma, Debra L Friedman, Mark J Stavas
BACKGROUND: There are few published data to guide the use and timing of palliative radiation therapy (RT) in children. We aimed to determine the clinical outcomes of palliative RT in children and the relationship with palliative care and hospice referrals. PROCEDURE: A retrospective chart review was performed on all patients younger than 18 years who received palliative RT in our clinic from January 2005 to January 2015. RESULTS: In the specified time period, 50 children underwent 83 courses of palliative RT...
December 21, 2016: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/27999228/barriers-to-the-development-of-pediatric-palliative-care-in-italy
#19
Franca Benini, Marcello Orzalesi, Anna de Santi, Sabrina Congedi, Pierina Lazzarin, Federico Pellegatta, Lucia De Zen, Marco Spizzichino, Enrico Alleva
INTRODUCTION: In recent years the emergence of new types of patient, clinical situations, technological frontiers and "health" objectives have changed considerably the needs of ill children, this also concerns pediatric palliative care (PPC). In Italy, despite the introduction of legislation (Law 38/2010) stipulating the right of children and families to access appropriate services for pain control and pediatric palliative care, the availability of these services is still limited. AIM: The aim of this study is to highlight, through a review of the existing data and published literature, the critical issues that obstacle the planning and development of PPC services in Italy...
October 2016: Annali Dell'Istituto Superiore di Sanità
https://www.readbyqxmd.com/read/27980029/risk-stratification-for-opioid-misuse-in-children-adolescents-and-young-adults-a-quality-improvement-project
#20
Rachel Thienprayoon, Kelly Porter, Michelle Tate, Marshall Ashby, Mark Meyer
BACKGROUND: The Pediatric Palliative and Comfort Care Team (PACT) at Cincinnati Children's Hospital Medical Center (CCHMC) provides opioids to a large population of patients in the ambulatory setting. Before this project, PACT had no reliable system to risk stratify patients for opioid misuse. METHODS: The global aim was safe opioid prescribing by the palliative care team. The specific, measurable, achievable, realistic, and timely aim was as follows: "In patients who present for follow up with PACT, we will use the "opioid bundle" to increase risk stratification for opioid misuse from 0% to 90% over 5 months...
January 2017: Pediatrics
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