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Pediatric palliative care

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https://www.readbyqxmd.com/read/28486031/use-of-telehealth-in-pediatric-palliative-care
#1
Billie Winegard, Elissa G Miller, Nicholas B Slamon
OBJECTIVES: Pediatric subspecialty care, including multidisciplinary palliative care, tends to be located in urban academic centers or children's hospitals. Telehealth provides the opportunity to care for patients who would otherwise not be able to access services. We present cases wherein telehealth was used to provide counseling services to patients who would not have been able to receive this service. METHODS: We discuss cases of telehealth use for patient and family counseling in the setting of palliative care and bereavement follow-up...
May 9, 2017: Telemedicine Journal and E-health: the Official Journal of the American Telemedicine Association
https://www.readbyqxmd.com/read/28481160/single-center-experience-providing-palliative-care-to-pediatric-patients-with-end-stage-renal-disease
#2
Patricia Keefer, Katie Lehmann, Maureen Shanley, Tara Woloszyk, Erin Khang, Kera Luckritz, D'Anna Saul
BACKGROUND: End-stage renal disease (ESRD) affects nearly 1400 new children each year in the United States. Morbidity and mortality rates remain high for pediatric patients with ESRD, including those that have received a renal transplant. OBJECTIVE: To better understand ESRD patients referred to palliative care, including their physical symptoms, topics discussed, and themes emerging during initial palliative care consultation. DESIGN/SUBJECTS: This study is a retrospective chart review of pediatric ESRD patients who received a palliative care consult...
May 8, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28469334/clinical-profile-of-pediatric-oncology-patients-treated-by-external-beam-radiotherapy-an-institutional-experience
#3
Virender Suhag, B S Sunita, Pankaj Vats, Arti Sarin, A K Singh, Mayuri Jain
INTRODUCTION: Pediatric tumors are a heterogeneous group of malignant conditions requiring multimodal treatment, and management of such cases is at time challenging. We present the clinical profile of pediatric cancer patients who received radiation, either alone or as adjuvant to surgery and chemotherapy; in prophylactic, radical or palliative clinical setting. AIM: This study was envisaged to review our experience of pediatric oncology cases, their clinical and morphological profile, dosage schedule of radiotherapy, and the therapy induced complications...
January 2017: Indian Journal of Medical and Paediatric Oncology
https://www.readbyqxmd.com/read/28458185/the-experiences-of-undergraduate-nursing-students-and-self-reflective-accounts-of-first-clinical-rotation-in-pediatric-oncology
#4
Jila Mirlashari, Fay Warnock, Jahanfar Jahanbani
The clinical practicum is one of the most anticipated components of the nursing program for nursing students. However, the practicum can be anxiety producing for students, especially when it is their first placement in an emotional demanding setting like pediatric oncology unit. Taking care of children with cancer and who are facing the death trajectory is complex and demanding not only for students but also for the experienced nurse. In this qualitative research, the purpose was to explore senior student perceptions and self-reflective accounts of what it was like to care for children with cancer and their family throughout the course of their first practicum on a pediatric oncology unit that also provided children palliative care as needed...
April 10, 2017: Nurse Education in Practice
https://www.readbyqxmd.com/read/28453361/trends-in-hospital-utilization-and-costs-among-pediatric-palliative-care-recipients
#5
Prasanna Ananth, Patrice Melvin, Jay G Berry, Joanne Wolfe
OBJECTIVE AND BACKGROUND: Few previous studies have explored how pediatric palliative care (PPC) influences hospital utilization. We evaluated this among PPC recipients in a single center. METHODS: This is a retrospective cohort study of 109 patients ≥2 years of age who received PPC consultation at a large quaternary children's hospital from April 2009 to September 2010. We assessed frequencies of hospital admissions and emergency department (ED) visits, use of intensive interventions, and hospital costs...
April 28, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28444652/-establishment-of-specialized-pediatric-palliative-home-care-in-the-medical-valley-of-the-european-metropolitan-area-nuremberg
#6
Steven Hébert, Chara Gravou-Apostolatou, Wolfgang Rascher
Background As part of the 2007 health reform in Germany the structure of outpatient palliative care for children and adolescents was adopted for the first time and then implemented in Erlangen-Nuremberg in 2009. Methods The introduction of Pediatric Palliative Home Care (PPHC) at the Hospital for Children and Adolescents at the University of Erlangen-Nuremberg was retrospectively analyzed between the years 2009 to 2014. Referring medical records (paper-based and electronic) were evaluated systematically. Results Considering 69 patients within this study, 44 (63...
March 2017: Klinische Pädiatrie
https://www.readbyqxmd.com/read/28439690/association-of-endotracheal-tube-repositioning-and-acute-laryngeal-lesions-during-mechanical-ventilation-in-children
#7
Denise Manica, Catia de Souza Saleh Netto, Cláudia Schweiger, Leo Sekine, Larissa Valency Enéas, Denise Rotta Pereira, Gabriel Kuhl, Paulo Roberto Antonacci Carvalho, Paulo José Cauduro Marostica
The objective of this study is to determine the incidence of post-extubation acute laryngeal lesions in a pediatric intensive care unit (PICU) and potential risk factors. Children, aged 28 days to 5 years, admitted to the PICU who required endotracheal intubation for at least 24 h were enrolled. Exclusion criteria were a previous intubation, history of laryngeal disease, current or past tracheostomy, the presence of craniofacial malformations and patients considered on palliative care. All patients underwent flexible fiber-optic laryngoscopy (FFL) not later than 8 h after extubation...
April 24, 2017: European Archives of Oto-rhino-laryngology
https://www.readbyqxmd.com/read/28436742/training-pediatric-fellows-in-palliative-care-a-pilot-comparison-of-simulation-training-and-didactic-education
#8
Katharine E Brock, Harvey J Cohen, Barbara M Sourkes, Julie J Good, Louis P Halamek
BACKGROUND: Pediatric fellows receive little palliative care (PC) education and have few opportunities to practice communication skills. OBJECTIVE: In this pilot study, we assessed (1) the relative effectiveness of simulation-based versus didactic education, (2) communication skill retention, and (3) effect on PC consultation rates. DESIGN: Thirty-five pediatric fellows in cardiology, critical care, hematology/oncology, and neonatology at two institutions enrolled: 17 in the intervention (simulation-based) group (single institution) and 18 in the control (didactic education) group (second institution)...
April 24, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28416424/-first-requests-for-a-regional-pediatric-palliative-care-team-a-prospective-and-observational-study
#9
L Marty, F Bernard, M Pierre, S Bringuier-Branchereau, N Sirvent, A Ribrault
INTRODUCTION: In France, 26 regional pediatric palliative care teams (ERRSPP) were created between 2008 and 2012. We conducted the first prospective French study to describe the main specifications of the initial contact with an ERRSPP and to analyze the responses given. DESIGN AND METHODS: All the requests for interventions on the part of the ERRSPP were collected between September 2013 and September 2014. We prospectively completed a questionnaire on the patient's clinical and demographic data (age, sex, disease), details regarding the request (type of applicant, unit's specialty, request pattern), and the answers provided (interval between diagnosis and request, duration of care by ERRSPP, death, changes compared to the initial request)...
April 14, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28375994/translating-research-to-practice-providing-critically-ill-children-the-opportunity-to-go-home-or-to-hospice-for-end-of-life-care
#10
Harriett Nelson, Sandra Mott
BACKGROUND: A freestanding quaternary pediatric hospital in New England has been facilitating parents' requests to take their child home or to a hospice facility from an Intensive Care Unit at end of life for the withdrawal of life sustaining measures for the past 16 years. However, knowledge of the aftermath of this decision was very limited. Before responding to a growing interest in making this service more available, an exploratory study was done to learn about the parents' perceptions of the experience over time...
May 2017: Dimensions of Critical Care Nursing: DCCN
https://www.readbyqxmd.com/read/28345747/survey-of-opioid-tapering-practices-of-pediatric-healthcare-providers-a-national-perspective
#11
Fisher Deborah, Suzanne W Ameringer
OBJECTIVE: The purpose of this study was to describe the current opioid tapering practice. DESIGN: Cross-sectional, online, survey research. PARTICIPANTS: Pediatric healthcare providers from a national sample of practicing nurse practitioners, physician assistants, and physicians who participate in five different pediatric pain and/or palliative care list serves. RESULTS: One hundred four participants responded to the survey...
January 2017: Journal of Opioid Management
https://www.readbyqxmd.com/read/28342432/-ethical-dilemmas-in-practice-of-medicine-child
#12
Justo Ruiz López, Javier Navarro Zaragoza, Francisco Carrillo Navarro, Aurelio Luna Maldonado
After reviewing the existing bibliography in the last 20 years, we concluded that there is a lack of information regarding the ethical conflicts that affect to pediatrics in their daily practice. It produces certain degree of uncertainty in these professionals at the time of solving these problems. We made a systematic search in the main data bases, finding more than 150 articles related, of which 80 were considered outstanding. After studying them, we have found 40 ethical dilemmas, related to some principle of solution and that we described in this article...
January 2017: Cuadernos de Bioética: Revista Oficial de la Asociación Española de Bioética y Ética Médica
https://www.readbyqxmd.com/read/28335910/management-strategies-for-cln2-disease
#13
REVIEW
Ruth E Williams, Heather R Adams, Martin Blohm, Jessica L Cohen-Pfeffer, Emily de Los Reyes, Jonas Denecke, Kristen Drago, Charlie Fairhurst, Margie Frazier, Norberto Guelbert, Szilárd Kiss, Annamaria Kofler, John A Lawson, Lenora Lehwald, Mary-Anne Leung, Svetlana Mikhaylova, Jonathan W Mink, Miriam Nickel, Renée Shediac, Katherine Sims, Nicola Specchio, Meral Topcu, Ina von Löbbecke, Andrea West, Boris Zernikow, Angela Schulz
CLN2 disease (neuronal ceroid lipofuscinosis type 2) is a rare, autosomal recessive, pediatric-onset, rapidly progressive neurodegenerative lysosomal storage disorder caused by tripeptidyl peptidase 1 (TPP1) enzyme deficiency, and is characterized by language delay, seizures, rapid cognitive and motor decline, blindness, and early death. No management guidelines exist and there is a paucity of published disease-specific evidence to inform clinical practice, which currently draws upon experience from the field of childhood neurodisability...
April 2017: Pediatric Neurology
https://www.readbyqxmd.com/read/28322074/speaking-a-different-language
#14
Anne G Ciriello, Zoelle B Dizon, Tessie W October
BACKGROUND: Family conferences in the pediatric intensive care unit (ICU) often include palliative care (PC) providers. We do not know how ICU communication differs when the PC team is present. AIM: To compare language used by PC team and ICU physicians during family conferences. DESIGN: A retrospective cohort review of ICU family conferences with and without the PC team. SETTING: Forty-four bed pediatric ICU in a tertiary medical center...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28286527/interactive-palliative-and-end-of-life-care-modules-for-pediatric-residents
#15
Mindy K Ross, Ami Doshi, London Carrasca, Patricia Pian, JoAnne Auger, Amira Baker, James A Proudfoot, Mark S Pian
Background. There is a need for increased palliative care training during pediatric residency. Objective. In this pilot study, we created a comprehensive experiential model to teach palliative care skills to pediatric residents. Our Comfort Care Modules (CCMs) address pediatric palliative care (PPC) topics of breaking bad news, dyspnea, anxiety, pain management, and the dying child. We also evaluated a scoring system and gathered qualitative data. Methods. The CCMs are part of the University of California San Diego pediatric residency's second-year curriculum...
2017: International Journal of Pediatrics
https://www.readbyqxmd.com/read/28284824/-report-on-chronic-dialysis-in-france-in-2016
#16
Société Francophone de Néphrologie Dialyse Et Transplantation
The report on dialysis in France in 2016 from the French Speaking Society of Nephrology Dialysis and Transplantation (SFNDT) provides an exhaustive and documented inventory on dialysis in France. It underlines the organizations that are important in 2016 to maintain a high quality dialysis. Several measures are proposed to maintain and improve the care of dialysis in France: (1) The regulation of dialysis treatment in France must be maintained; (2) a burden of care indicator is proposed to ensure that patients requiring the most care are treated in the centers...
March 8, 2017: Néphrologie & Thérapeutique
https://www.readbyqxmd.com/read/28278338/pediatric-palliative-care-a-shared-priority
#17
Jennifer W Mack
No abstract text is available yet for this article.
March 9, 2017: JAMA Oncology
https://www.readbyqxmd.com/read/28278329/patients-and-parents-needs-attitudes-and-perceptions-about-early-palliative-care-integration-in-pediatric-oncology
#18
Deena R Levine, Belinda N Mandrell, April Sykes, Michele Pritchard, Deborah Gibson, Heather J Symons, David Wendler, Justin N Baker
Importance: Early palliative care integration for cancer patients is now touted as the optimal care model, yet significant barriers often prevent its implementation. A perceived barrier, especially for pediatric oncology patients, is the notion that patients and their families may not need or want palliative care involvement early in the disease trajectory. Objective: To determine the perception of symptom burden early in treatment and assess attitudes toward early integration of palliative care in pediatric oncology patient-parent pairs...
March 9, 2017: JAMA Oncology
https://www.readbyqxmd.com/read/28273758/aspects-and-intensity-of-pediatric-palliative-case-management-provided-by-a-hospital-based-case-management-team
#19
Charissa T Jagt-van Kampen, Derk A Colenbrander, Diederik K Bosman, Martha A Grootenhuis, Marijke C Kars, Antoinette Yn Schouten-van Meeteren
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/28265046/expanding-medicines-for-neurologic-disorders-on-the-who-model-list
#20
Kathryn Rimmer, Hiral Shah, Kiran Thakur
The WHO Model List of Essential Medicines is a recommended formulary for high-priority diseases based on public health trends and epidemiology patterns. The biennial publication serves as a guide for countries, particularly low- and lower-middle-income countries, to develop their own national essential medicines list (EML), and many nongovernmental organizations base their medication supplies on the WHO EML. Over the last 40 years, WHO has expanded the EML in response to treatment gaps for infectious diseases, pediatrics, palliative care, and cancer...
March 7, 2017: Neurology
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