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https://www.readbyqxmd.com/read/29223416/cost-variation-across-centers-for-the-norwood-operation
#1
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/29220099/supportive-palliative-care-should-be-integrated-into-routine-care-for-paediatric-patients-with-life-limiting-kidney-disease
#2
REVIEW
Julia Thumfart, Tobias Reindl, Cornelia Rheinlaender, Dominik Müller
AIM: Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). METHOD: We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families...
December 8, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/29218773/illness-and-end-of-life-experiences-of-children-with-cancer-who-receive-palliative-care
#3
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/29216521/the-use-of-palliative-medications-before-death-from-prostate-cancer-swedish-population-based-study-with-a-comparative-overview-of-european-data
#4
Magdalena Lycken, Linda Drevin, Hans Garmo, Pär Stattin, Jan Adolfsson, Ingela Franck Lissbrant, Lars Holmberg, Anna Bill-Axelson
BACKGROUND: Symptoms of terminal cancer have previously been reported as undertreated. The aim of this study was to assess the use of palliative medications before death from prostate cancer. METHODS: This Swedish register study included men who died from 2009 to 2012 with prostate cancer as the underlying cause of death. We assessed the proportion who collected a prescription of androgen deprivation therapy, non-steroidal anti-inflammatory drugs, paracetamol, opioids, glucocorticoids, antidepressants, anxiolytics and sedative-hypnotics and the differences in treatment related to age, time since diagnosis, educational level, close relatives and comorbidities...
December 4, 2017: European Journal of 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
#5
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/29198891/observing-the-advanced-disease-course-in-mucopolysaccharidosis-type-iiia-a-case-series
#6
Elsa Shapiro, Alia Ahmed, Chester Whitley, Kathleen Delaney
This follow-up study of a subgroup of the patients seen in a natural history study of mucopolysaccharidosis type IIIA (Sanfilippo syndrome type A) addressed the adaptive and medical characteristics of their advanced disease manifestations. Of the original 24 patients, specific data was collected on only 58% primarily due to difficulty in locating families and coordinating time for interviews two to four years after the original study. At the last contact with the patient, age range was 8 to 24years of age. Data were collected from telephone interviews from the Vineland Adaptive Behavior Scales II and medical and treatment history...
November 28, 2017: Molecular Genetics and Metabolism
https://www.readbyqxmd.com/read/29189353/pediatric-palliative-oncology-the-state-of-the-science-and-art-of-caring-for-children-with-cancer
#7
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
#8
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/29178866/a-scoping-review-of-palliative-care-for-children-in-low-and-middle-income-countries
#9
Hatoko Sasaki, Marie-Charlotte Bouesseau, Joan Marston, Rintaro Mori
BACKGROUND: Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs. METHODS: A scoping review was performed following the method of Arksey and O'Malley...
November 25, 2017: BMC Palliative Care
https://www.readbyqxmd.com/read/29174080/patterns-of-care-at-the-end-of-life-for-children-and-young-adults-with-life-threatening-complex-chronic-conditions
#10
Danielle D DeCourcey, Melanie Silverman, Adeolu Oladunjoye, Emily M Balkin, Joanne Wolfe
OBJECTIVE: To characterize patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions (LT-CCCs) and to compare them by LT-CCC type. STUDY DESIGN: Cross-sectional survey of bereaved parents (n = 114; response rate of 54%) of children with noncancer, noncardiac LT-CCCs who received care at a quaternary care children's hospital and medical record abstraction. RESULTS: The majority of children with LT-CCCs died in the hospital (62...
November 21, 2017: Journal of Pediatrics
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
#11
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
#12
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
https://www.readbyqxmd.com/read/29151558/-a-comparison-of-hospice-care-research-topics-between-korea-and-other-countries-using-text-network-analysis
#13
Eun Jun Park, Youngji Kim, Chan Sook Park
PURPOSE: This study aimed to identify and compare hospice care research topics between Korean and international nursing studies using text network analysis. METHODS: The study was conducted in four steps: 1) collecting abstracts of relevant journal articles, 2) extracting and cleaning keywords (semantic morphemes) from the abstracts, 3) developing co-occurrence matrices and text-networks of keywords, and 4) analyzing network-related measures including degree centrality, closeness centrality, betweenness centrality, and clustering using the NetMiner program...
October 2017: Journal of Korean Academy of Nursing
https://www.readbyqxmd.com/read/29134758/who-is-responsible-for-delivering-palliative-care-to-children-with-cancer
#14
Abby R Rosenberg, Meaghann S Weaver, Lori Wiener
No abstract text is available yet for this article.
November 14, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29128922/causes-of-renal-oligohydramnios-impact-on-prenatal-counseling-and-postnatal-outcome
#15
EDITORIAL
Sebastian Loos, Markus J Kemper
The presence of renal oligohydramnios (ROH) in a fetus has been associated in the past with a poor prognosis for survival, although recent studies have shown that survival has improved considerably due to the advances in neonatology and pediatric nephrology. In an article recently published in Pediatric Nephrology, evaluation of a large series by Mehler and colleagues confirms the improved prognosis, showing a survival rate of 32 of 38 (84%). In addition, only 12 of 35 (34%) neonates required renal replacement therapy...
November 11, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29127099/individualised-advance-care-planning-in-children-with-life-limiting-conditions
#16
Erik A H Loeffen, Wim J E Tissing, Meggi A Schuiling-Otten, Chris C de Kruiff, Leontien C M Kremer, A A Eduard Verhagen
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires...
November 10, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29123342/palliative-care-for-children-with-cancer-in-the-middle-east-a-comparative-study
#17
Leila Khanali Mojen, Maryam Rassouli, Peyman Eshghi, Ali Akbari Sari, Majideh Heravi Karimooi
Introduction: High incidence rates of childhood cancer and the consequent deaths in the Middle East is one of the major reasons for the need for palliative care in these countries. Using the experiences and innovations of the other countries can provide a pattern for the countries of the region and lead to the development of palliative care in children. Therefore, the aim of this study is to compare the status of pediatric palliative care in Egypt, Lebanon, Jordan, Turkey, and Iran. Materials and Methods: This is a comparative study in which the information related to pediatric palliative care system in the target countries (from 2000 to 2016) has been collected, summarized, and classified by searching in databases, such as "PubMed, Scopus, Google scholar, Ovid, and science direct...
October 2017: Indian Journal of Palliative Care
https://www.readbyqxmd.com/read/29122828/referrals-to-a-perinatal-specialist-palliative-care-consult-service-in-ireland-2012-2015
#18
Des L McMahon, Marie Twomey, Maeve O'Reilly, Mary Devins
OBJECTIVE: To analyse the referral patterns of perinatal patients referred to a specialist palliative care service (SPCS), their demographics, diagnoses, duration of illness, place of death and symptom profile. DESIGN: A retrospective chart review of all perinatal referrals over a 4-year period to the end of 2015. SETTING: A consultant-led paediatric SPCS at Our Lady's Children's Hospital, Crumlin, Dublin, and the Coombe Women & Infants University Hospital, Dublin...
November 9, 2017: Archives of Disease in Childhood. Fetal and Neonatal Edition
https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#19
Savithri Nageswaran, Anna Hurst, Andrea Radulovic
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29110572/tracheostomy-as-a-comfort-measure-in-children-with-life-limiting-conditions
#20
Valerie Marshall, Francesca Holt, Suzanne Crowe
Palliative care for children who can expect only a short life has expanded over the last decade. Greater understanding of the measures required to ensure comfort and acceptable quality of life within the critical care environment has grown in tandem. Some more invasive interventions may be considered a "step too far" by some practitioners, including feeding gastrostomy, contracture release, and tracheostomy. Tracheostomy can facilitate a number of measures, which may enhance the brief life of the child and their family...
January 1, 2017: Journal of Palliative Care
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