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Pediatric palliative

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https://www.readbyqxmd.com/read/28808789/palliative-care-for-children-with-a-yet-undiagnosed-syndrome
#1
Jessica I Hoell, Jens Warfsmann, Gabriele Gagnon, Laura Trocan, Stefan Balzer, Prasad T Oommen, Arndt Borkhardt, Gisela Janßen, Michaela Kuhlen
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7...
August 14, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28807702/factors-associated-with-use-of-u-s-community-based-palliative-care-for-children-with-life-limiting-or-life-threatening-illnesses-and-their-families-an-integrative-review
#2
REVIEW
Jackelyn Y Boyden, Martha A Q Curley, Janet A Deatrick, Mary Ersek
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28807699/communication-challenges-of-oncologists-and-intensivists-caring-for-pediatric-oncology-patients-a-qualitative-study
#3
Folasade Odeniyi, Pamela G Nathanson, Theodore E Schall, Jennifer K Walter
CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28807643/-use-of-subcutaneous-route-for-comfort-care%C3%A2-in-neonatal-palliative-population-systematic-review-and-survey-of-practices-in-france
#4
N Pouvreau, J Tandonnet, O Tandonnet, L Renesme
INTRODUCTION: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not exist due to a lack of data. In this study, the advantages of subcutaneous analgesic therapy in terms of comfort in neonatal palliative care situations were investigated. METHODS: This report details the results of a systematic review associated with a survey in neonatal intensive care units (NICUs) and pediatric palliative care departments (PPCTs) in France...
August 11, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28804708/pediatric-palliative-care-initiative-in-cambodia
#5
Mahmut Yaşar Çeliker, Yos Pagnarith, Kazumi Akao, Dim Sophearin, Sokchea Sorn
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia...
2017: Frontiers in Public Health
https://www.readbyqxmd.com/read/28797863/palliative-care-development-in-mongolia
#6
Odontuya Davaasuren, Frank Ferris
CONTEXT: Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. METHODS: Systematic reviews and observational studieson palliative care development in Mongolia have taken place overthe past 16 years. RESULTS: Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department...
August 7, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#7
Rachna May, Jess Thompson
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population...
August 4, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28771913/influence-of-early-phase-clinical-trial-enrollment-on-patterns-of-end-of-life-care-for-children-with-advanced-cancer
#8
Prasanna Ananth, Chalinee Monsereenusorn, Clement Ma, Hasan Al-Sayegh, Joanne Wolfe, Carlos Rodriguez-Galindo
We conducted a retrospective cohort study of 125 pediatric oncology patients who died in 2010-2014 to explore how healthcare utilization, pediatric palliative care (PPC) receipt, and end-of-life care (EOLC) differed between patients enrolled in early phase clinical trials (EP) and those not enrolled (NEP). Baseline characteristics and healthcare utilization did not significantly differ between groups. EP patients received PPC consultation closer to death than NEP patients (median days before death = 58 [interquartile range = 16-84] vs...
August 3, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/28768111/providing-pediatric-palliative-care-education-using-problem-based-learning
#9
Karen Moody, Marlene McHugh, Rebecca Baker, Hillel Cohen, Priya Pinto, Stephanie Deutsch, Ruth O Santizo, Miriam Schechter, James Fausto, Pablo Joo
BACKGROUND: The Institute of Medicine and the American Academy of Pediatrics has called for improvement in education and training of pediatricians in pediatric palliative care (PPC). Given the shortage of PPC physicians and the immediate need for PPC medical education, this study reports the outcomes of a problem-based learning (PBL) module facilitated by academic general and subspecialty pediatric faculty (non-PPC specialists) to third year medical students. Objectives/Setting: To test the effectiveness of a PPC-PBL module on third year medical students' and pediatric faculty's declarative knowledge, attitudes toward, perceived exposure, and self-assessed competency in PPC objectives...
August 2, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28763047/trending-longitudinal-agreement-between-parent-and-child-perceptions-of-quality-of-life-for-pediatric-palliative-care-patients
#10
Meaghann S Weaver, Cheryl Darnall, Sue Bace, Catherine Vail, Andrew MacFadyen, Christopher Wichman
Pediatric palliative care studies often rely on proxy-reported instead of direct child-reported quality of life metrics. The purpose of this study was to longitudinally evaluate quality of life for pediatric patients receiving palliative care consultations and to compare patient-reported quality of life with parent perception of the child's quality of life across wellness domains. The 23-item PedsQL™ V4.0 Measurement Model was utilized for ten child and parent dyads at time of initial palliative care consultation, Month 6, and Month 12 to assess for physical, emotional, social, and cognitive dimensions of quality of life as reported independently by the child and by the parent for the child...
August 1, 2017: Children
https://www.readbyqxmd.com/read/28759411/controversy-about-dialysis-for-an-adolescent
#11
Tyler Tate, Aviva Goldberg, Aaron Wightman, Bradley A Warady, John D Lantos
For patients on dialysis, 1 frequent cause of death is their voluntary decision to discontinue dialysis. Such decisions raise complex questions when the patient is a competent adult. The decisions are even more complex when the patient is an adolescent. In this article, we present a case in which a 17-year-old adolescent decided that she no longer wished to undergo dialysis through her fistula. Her doctors thought that dialysis using any other technique would be too dangerous. Four experts in pediatric nephrology, bioethics, and palliative care discuss this decision and the different ways that the health care team might respond...
July 2017: Pediatrics
https://www.readbyqxmd.com/read/28759277/the-experience-of-decision-making-in-the-care-of-children-with-palliative-care-needs-the-experiences-of-jordanian-mothers
#12
Maha Atout, Pippa Hemingway, Jane Seymour
The purpose of this study was to explore the experience of decision making in the care of children with palliative care needs in Jordan, from the perspective of their mothers. This study employed a collective qualitative case study approach. Data were collected in 3 pediatric wards in a Jordanian hospital. The study used 2 data collection methods: participant observation (197 observational hours) and 56 semi-structured interviews with 24 mothers, 12 physicians and 20 nurses. The findings show how Jordanian mothers seek to transfer the role of decision making to physicians, as they perceive themselves to be unable to make decisions about critical issues related to the treatment of their children...
July 31, 2017: Compr Child Adolesc Nurs
https://www.readbyqxmd.com/read/28740919/palliative-radiation-therapy-for-superior-vena-cava-syndrome-in-metastatic-wilms-tumor-using-10xfff-and-3d-surface-imaging-to-avoid-anesthesia-in-a-pediatric-patient-a-teaching-case
#13
Jean-Claude M Rwigema, Kelly Lamiman, Robert S Reznik, Nicole J H Lee, Arthur Olch, Kenneth K Wong
No abstract text is available yet for this article.
January 2017: Advances in Radiation Oncology
https://www.readbyqxmd.com/read/28737455/-difficulties-in-communication-with-parents-of-pediatric-cancer-patients-during-the-transition-to-palliative-care
#14
Judit Nyirő, Péter Hauser, Szilvia Zörgő, Katalin Hegedűs
INTRODUCTION: Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. AIM: To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. METHOD: Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas...
July 2017: Orvosi Hetilap
https://www.readbyqxmd.com/read/28734628/adrenergic-receptor-genotypes-influence-postoperative-outcomes-in-infants-in-the-single-ventricle-reconstruction-trial
#15
Ronand Ramroop, George Manase, Danny Lu, Dorin Manase, Shan Chen, Richard Kim, Teresa Lee, William T Mahle, Kimberly McHugh, Mike Mitchell, Martin Tristani-Firouzi, Stephanie B Wechsler, Nicole S Wilder, Victor Zak, Myriam Lafreniere-Roula, Jane W Newburger, J William Gaynor, Mark W Russell, Seema Mital
OBJECTIVES: Adrenergic receptor (ADR) genotypes have been associated with adverse outcomes in heart failure. Our objective was to evaluate the association of ADR genotypes with post-Norwood outcomes in infants with hypoplastic left heart syndrome (HLHS). METHODS: Infants with HLHS participating in the Pediatric Heart Network Single-Ventricle Reconstruction Trial underwent genotyping for 4 single-nucleotide polymorphisms in 3 ADR genes: ADRB1_231A/G, ADRB1_1165G/C, ADRB2_5318C/G, and ADRA2A_2790C/T...
June 24, 2017: Journal of Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/28728768/maintaining-integrity-how-nurses-navigate-boundaries-in-pediatric-palliative-care
#16
Alyssa Erikson, Betty Davies
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families. DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide. RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally...
July 2017: Journal of Pediatric Nursing
https://www.readbyqxmd.com/read/28720202/a-novel-surgical-approach-to-mechanical-circulatory-support-in-univentricular-infants
#17
Avihu Z Gazit, Orlando Petrucci, Peter Manning, Mark Shepard, Sirine Baltagi, Kathleen Simpson, Chesney Castleberry, Charles Canter, Pirooz Eghtesady
BACKGROUND: Historically, the options for mechanical circulatory support in infants, particularly those with single-ventricle physiology, have been limited and outcomes have generally been poor. We report a new approach implemented for long-term support in a series of such patients. METHODS: This study is a single-center case series of 7 patients with single-ventricle physiology after stage 1 palliation supported with mechanical circulatory support using a novel technique, between May 2014 and September 2015...
July 15, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28711963/transfer-of-neonates-with-critical-congenital-heart-disease-within-a-regionalized-network
#18
Michael F Swartz, Jill M Cholette, Jennifer M Orie, Marshall L Jacobs, Jeffrey P Jacobs, George M Alfieris
Regionalization of pediatric cardiac surgical care varies between and within states. In most geographic regions, at least some neonates with critical heart disease are transferred from their birth hospital to a different hospital for surgery. The impact of neonatal transfer for surgery, particularly over a considerable distance (>10 miles), has been largely unexplored. We sought to examine the impact of transferring neonates for cardiac surgery. We queried the New York State Cardiac Surgery database (2005-2014) from a single institution to identify neonates born within the cardiac surgery center and those transferred for surgery...
July 15, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28700277/pediatric-palliative-oncology-bridging-silos-of-care-through-an-embedded-model
#19
Erica C Kaye, Jennifer M Snaman, Justin N Baker
No abstract text is available yet for this article.
July 12, 2017: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28696882/risk-factors-for-mortality-in-reoperations-for-pediatric-and-congenital-heart-surgery-in-a-developing-country
#20
Carlos A Villa-Hincapie, Marisol Carreno-Jaimes, Carlos E Obando-Lopez, Jaime Camacho-Mackenzie, Juan P Umaña-Mallarino, Nestor F Sandoval-Reyes
BACKGROUND: The survival of patients with congenital heart disease has increased in the recent years, because of enhanced diagnostic capabilities, better surgical techniques, and improved perioperative care. Many patients will require reoperation as part of staged procedures or to treat grafts deterioration and residual or recurrent lesions. Reoperations favor the formation of cardiac adhesions and consequently increase surgery time; however, the impact on morbidity and operative mortality is certain...
July 2017: World Journal for Pediatric & Congenital Heart Surgery
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