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Pediatric palliative

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https://www.readbyqxmd.com/read/29668027/heart-transplant-in-children-what-a-primary-care-provider-needs-to-know
#1
Swati Sehgal, Emily Shea, Lauren Kelm, Deepak Kamat
Heart transplantation is offered to children with heart failure that is not amenable to medical or surgical therapy. Indications for heart transplant include unrepairable congenital heart disease, failed palliation of congenital heart disease, and cardiomyopathies. There has been tremendous progress in this field since the first heart transplant was performed in 1967. Each year, approximately 500 pediatric heart transplants take place worldwide. Pediatric heart transplant survivors are living longer with their initial transplant...
April 1, 2018: Pediatric Annals
https://www.readbyqxmd.com/read/29666009/in-vitro-validation-of-a-self-driving-aortic-turbine-venous-assist-device-for-fontan-patients
#2
Kerem Pekkan, Ibrahim Basar Aka, Ece Tutsak, Erhan Ermek, Haldun Balim, Ismail Lazoglu, Riza Turkoz
BACKGROUND: Palliative repair of single ventricle defects involve a series of open-heart surgeries where a single-ventricle (Fontan) circulation is established. As the patient ages, this paradoxical circulation gradually fails, because of its high venous pressure levels. Reversal of the Fontan paradox requires an extra subpulmonic energy that can be provided through mechanical assist devices. The objective of this study was to evaluate the hemodynamic performance of a totally implantable integrated aortic-turbine venous-assist (iATVA) system, which does not need an external drive power and maintains low venous pressure chronically, for the Fontan circulation...
March 11, 2018: Journal of Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29656703/the-ethics-of-concurrent-care-for-children-a-social-justice-perspective
#3
Kim Mooney-Doyle, Jessica Keim-Malpass, Lisa C Lindley
Recent estimates indicate that over 40,000 children die annually in the United States and a majority have life-limiting conditions. Children at end of life require extensive healthcare resources, including multiple hospital readmissions and emergency room visits. Yet, many children still suffer from symptoms at end of life-including fatigue, pain, dyspnea, and anxiety-with less than 10% of these children utilizing hospice care services. A critical barrier to pediatric hospice use was the original federal regulations associated with the hospice care that required a diagnosis of 6 months to live and the discontinuation of all curative treatments...
January 1, 2018: Nursing Ethics
https://www.readbyqxmd.com/read/29649402/end-of-life-treatments-in-pediatric-patients-at-a-government-tertiary-cancer-center-in-india
#4
Jean Jacob, Jaskirt K Matharu, Gayatri Palat, Sudha Sinha, Eva Brun, Thomas Wiebe, Mikael Segerlantz
AIM: The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India. METHODS: A retrospective review was undertaken of medical charts of all children younger than 18 years, who died as inpatients while undergoing treatment at the pediatric oncology department between April and September 2016. Data were collected on demographics, diagnosis, treatments, survival, palliative care involvement, and symptoms at end of life...
March 20, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29627863/the-codesign-of-an-interdisciplinary-team-based-intervention-regarding-initiating-palliative-care-in-pediatric-oncology
#5
Douglas L Hill, Jennifer K Walter, Jessica A Casas, Concetta DiDomenico, Julia E Szymczak, Chris Feudtner
PURPOSE: Children with advanced cancer are often not referred to palliative or hospice care before they die or are only referred close to the child's death. The goals of the current project were to learn about pediatric oncology team members' perspectives on palliative care, to collaborate with team members to modify and tailor three separate interdisciplinary team-based interventions regarding initiating palliative care, and to assess the feasibility of this collaborative approach. METHODS: We used a modified version of experience-based codesign (EBCD) involving members of the pediatric palliative care team and three interdisciplinary pediatric oncology teams (Bone Marrow Transplant, Neuro-Oncology, and Solid Tumor) to review and tailor materials for three team-based interventions...
April 7, 2018: Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer
https://www.readbyqxmd.com/read/29622280/effectiveness-of-total-corpus-callosotomy-for-diffuse-bilateral-polymicrogyria-report-of-three-pediatric-cases
#6
Shimpei Baba, Tohru Okanishi, Mitsuyo Nishimura, Sotaro Kanai, Shinji Itamura, Takayuki Suzuki, Yosuke Masuda, Hideo Enoki, Ayataka Fujimoto
PURPOSE: Polymicrogyria, a malformation of the cerebral cortex, frequently causes epilepsy. Diffuse bilateral polymicrogyria (DBP) is related to poor epilepsy prognosis, but most patients with DBP are not good candidates for resective epilepsy surgery and effectiveness of corpus callosotomy (CC), a palliative surgery, for patients without resective epileptogenic cortices, has not been established in DBP. Because CC might be effective against DBP-related epilepsy, we conducted total CC in three pediatric DBP cases...
April 3, 2018: Brain & Development
https://www.readbyqxmd.com/read/29621556/from-fear-to-confidence-changing-providers-attitudes-about-pediatric-palliative-and-hospice-care
#7
Tamara Vesel, Christiana Beveridge
CONTEXT: Children have limited access to hospice care: few existing hospice programs have dedicated pediatric teams, and adult hospice providers feel inadequately trained to care for children. OBJECTIVES: The aim of this study is to increase access to pediatric hospice care by empowering adult hospice providers to care for children through a comprehensive education program. Education empowers providers by changing their attitudes from inadequacy to confidence. METHODS: The authors developed a two-day education program to train interdisciplinary teams of adult hospice providers in pediatric care...
April 2, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29620556/parent-perspectives-of-receiving-early-information-about-palliative-and-end-of-life-care-options-from-their-child-s-pediatric-providers
#8
Verna L Hendricks-Ferguson, Joan E Haase
BACKGROUND: Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child's providers. OBJECTIVE: The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled "Communication Plan: Early through End of Life Intervention" (COMPLETE) from an interprofessional team of physician and registered nurse providers...
April 3, 2018: Cancer Nursing
https://www.readbyqxmd.com/read/29619566/utility-of-pediatric-female-fertility-preservation-discussions-following-pelvic-radiation
#9
Rebecca M Rentea, Ashwini S Poola, Joy M Fulbright, Shawn D St Peter, Sohail R Shah
INTRODUCTION: While many childhood cancers are curable with therapy, adverse consequences in fertility exist. We sought to assess the number of female patients with pelvic tumors receiving radiation therapy, and the proportion that undergo measures for fertility preservation (FP). METHODS: A total of 53 female patients treated with pelvic tumors from 2000 to 2016 were retrospectively identified. RESULTS: 19 (34%) of these patients underwent pelvic radiation therapy (pXRT)...
April 4, 2018: Pediatric Surgery International
https://www.readbyqxmd.com/read/29616598/knowledge-beliefs-and-behaviors-related-to-palliative-care-delivery-among-pediatric-oncology-health-care-providers
#10
Jessica L Spruit, Cynthia J Bell, Valerie B Toly, Maryjo Prince-Paul
The care of pediatric patients with cancer and their families is complex and rapidly evolving. Despite significant advances in outcomes, symptoms of the disease and complications of therapy continue to cause suffering that may improve with the involvement of pediatric palliative care (PPC) services. This descriptive study responds to the observation of great variability in PPC utilization within pediatric oncology. Data collected from 156 health care professionals (nurses, advanced practice professionals, and physicians) from a statewide hematology alliance evaluates the knowledge, beliefs, and perceived barriers to PPC involvement...
April 1, 2018: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
https://www.readbyqxmd.com/read/29603317/innovative-discharge-process-for-families-with-pediatric-short-bowel-syndrome-a-prospective-nonrandomized-trial
#11
Bram P Raphael, Maria Jorina, Mary Gallotto, Glendalis Grullon, Meghan Dalton, Melissa Takvorian-Bené, Christina Tascione, Carolyn Rosa, Jennifer McClelland, Megan Gray, Alexis K Potemkin, Courtney Glavin, Kathleen M Gura, Margaret K Murphy, Kierrah Leger, Judith Mahoney, Jessica Kerr, Al Ozonoff, Christopher P Duggan
BACKGROUND: Home parenteral nutrition (HPN) is a life-sustaining therapy for short bowel syndrome (SBS) and other severe digestive diseases, but complications are common. We evaluated a predischarge HPN hands-on training course to reduce complications in children with SBS, including hospital readmissions. METHODS: We conducted a prospective, nonrandomized controlled research study between April 1, 2014, and April 30, 2017. Eligible participants were children aged <18 years old with SBS and anticipated HPN dependence duration ≥6 months...
March 30, 2018: JPEN. Journal of Parenteral and Enteral Nutrition
https://www.readbyqxmd.com/read/29597333/from-the-child-s-word-to-clinical-intervention-novel-new-and-innovative-approaches-to-symptoms-in-pediatric-palliative-care
#12
Katharine E Brock, Joanne Wolfe, Christina Ullrich
Despite vast improvements in disease-based treatments, many children live with life-threatening disorders that cause distressing symptoms. These symptoms can be difficult to comprehensively assess and manage. Yet, frequent and accurate symptom reporting and expert treatment is critical to preserving a patient's physical, psychological, emotional, social, and existential heath. We describe emerging methods of symptom and health-related quality-of-life (HRQOL) assessment through patient-reported outcomes (PROs) tools now used in clinical practice and novel research studies...
March 28, 2018: Children
https://www.readbyqxmd.com/read/29577004/staged-surgical-palliation-for-hlhs-in-a-girl-with-severe-factor-x-deficiency
#13
Ahmed F Elmahrouk, Mohamed F Ismail, Abdulbadee Bugis, Nashwa Badawy, Hesham Mohamed Aboelghar, Tamer Hamouda, Ahmed Jamjoom
Background  Factor X deficiency (also known as Stuart-Prower factor deficiency) is an autosomal recessive extremely rare hereditary hematologic disorder, affecting around 1:1,000,000 of the general population. Case Presentation  This case report describes a patient with hypoplastic left heart syndrome and severe factor X deficiency, who underwent staged surgical palliation. From stage 1 Norwood palliation, through superior cavopulmonary anastomosis and ending with total cavopulmonary connection with satisfactory hemostasis and no significant perioperative bleeding complication...
January 2018: Thoracic and Cardiovascular Surgeon Reports
https://www.readbyqxmd.com/read/29575773/non-invasive-ventilation-practices-in-children-across-europe
#14
Juan Mayordomo-Colunga, Martí Pons-Òdena, Alberto Medina, Corsino Rey, Christophe Milesi, Merja Kallio, Andrea Wolfler, Mireia García-Cuscó, Demet Demirkol, Milagros García-López, Peter Rimensberger
OBJECTIVES: To describe the diversity in practice in non-invasive ventilation (NIV) in European pediatric intensive care units (PICUs). WORKING HYPOTHESIS: No information about the use of NIV in Pediatrics across Europe is currently available, and there might be a wide variability regarding the approach. STUDY DESIGN: Cross-sectional electronic survey. METHODOLOGY: The survey was distributed to the ESPNIC mailing list and to researchers in different European centers...
March 24, 2018: Pediatric Pulmonology
https://www.readbyqxmd.com/read/29575399/unique-application-of-awake-tracheoscopy-and-endobronchial-ultrasound-in-the-management-of-tracheal-mucoepidermoid-carcinoma
#15
Saad Rehman, Harold N Lovvorn, Otis B Rickman, Christopher T Wootten, Sivakumar Chinnadurai
BACKGROUND: Mucoepidermoid carcinoma of the trachea is a rare pediatric malignancy that presents unique challenges in diagnosis, operative management, and surveillance. METHODS AND RESULTS: We present a 17-year-old girl with primary tracheal mucoepidermoid carcinoma presenting in acute respiratory distress due to near-total occlusion of the tracheal airway. An algorithmic approach to preoperative planning was developed to evaluate and remove the tumor endoscopically without compromising oxygenation...
March 25, 2018: Head & Neck
https://www.readbyqxmd.com/read/29570850/physician-characteristics-influence-the-trends-in-resuscitation-decisions-at-different-ages
#16
Thor Willy Ruud Hansen, Olaf Aasland, Annie Janvier, Reidun Førde
AIM: We examined how physicians in different medical specialties would evaluate treatment decisions for vulnerable patients in need of resuscitation. METHODS: A survey depicting six acutely ill patients from newborn infant to aged, all in need of resuscitation with similar prognoses, was distributed (in 2009) to a representative sample of 1650 members of the Norwegian Medical Association and 676 members of the Norwegian Pediatric Association. RESULTS: There were 1335 respondents (57% participation rate)...
March 23, 2018: Acta Paediatrica
https://www.readbyqxmd.com/read/29564906/-pediatric-palliative-care
#17
Mahulena Mojžíšová
Based on the definition by the WHO from 1998, palliative care for children is the active, total care of the childs body, mind and spirit, and involves giving care to the family. It begins when the illness is diagnosed and continues regardless of whether a child receives treatment directed at the disease. The World Health Organization (WHO) definition of pediatric palliative care was adopted by IMPaCCT (International Meeting for Palliative Care in Children, Trento) and became the key point of document, which defines and determines standards for care of children with life-limiting and life-threatening disease and recommends that these standards should be implemented in all European countries...
2018: Casopís Lékar̆ů C̆eských
https://www.readbyqxmd.com/read/29544417/predictors-of-pericardial-effusion-in-patients-undergoing-pulmonary-artery-banding
#18
Mio Noma, Muneaki Matsubara, Chiho Tokunaga, Tomomi Nakajima, Bryan James Mathis, Hiroaki Sakamoto, Yuji Hiramatsu
BACKGROUND: Although pulmonary artery banding (PAB) is a common palliative procedure for pediatric heart malformation, there are concerns of pressure overload and concomitant immune reactions in the right ventricle causing postsurgical complications such as pericardial effusion. At this time, no clear guidelines as to potential risk factors or procedural contraindications have been widely disseminated. Therefore, a study was undertaken to examine wide-ranging factors to find potential biomarkers for postsurgical pericardial effusion formation risk...
March 2018: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/29543227/meeting-the-challenges-of-implementing-rapid-genomic-testing-in-acute-pediatric-care
#19
Zornitza Stark, Sebastian Lunke, Gemma R Brett, Natalie B Tan, Rachel Stapleton, Smitha Kumble, Alison Yeung, Dean G Phelan, Belinda Chong, Miriam Fanjul-Fernandez, Justine E Marum, Matthew Hunter, Anna Jarmolowicz, Yael Prawer, Jessica R Riseley, Matthew Regan, Justine Elliott, Melissa Martyn, Stephanie Best, Tiong Y Tan, Clara L Gaff, Susan M White
PurposeThe purpose of the study was to implement and prospectively evaluate the outcomes of a rapid genomic diagnosis program at two pediatric tertiary centers.MethodsRapid singleton whole-exome sequencing (rWES) was performed in acutely unwell pediatric patients with suspected monogenic disorders. Laboratory and clinical barriers to implementation were addressed through continuous multidisciplinary review of process parameters. Diagnostic and clinical utility and cost-effectiveness of rWES were assessed.ResultsOf 40 enrolled patients, 21 (52...
March 15, 2018: Genetics in Medicine: Official Journal of the American College of Medical Genetics
https://www.readbyqxmd.com/read/29526348/interventions-in-the-operating-room-for-children-near-end-of-life-a-multidisciplinary-approach
#20
Marianne Goudreault, Nago Humbert, France Gauvin, Monia Marzouki, Catherine K Beaumier, Dickens St-Vil, Nelson Piché
INTRODUCTION: Pediatric surgeons are often involved in the management of severely or terminally ill patients. However, articles addressing their specific roles in the context of palliative care are almost inexistent. We sought to characterize the involvement of pediatric surgeons caring for children near end of life. METHODS: Chart review of children who had a procedure under general anesthesia within 6months of their death over a five-year period at a tertiary children's hospital (excluding traumas and neonatology cases)...
February 9, 2018: Journal of Pediatric Surgery
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