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Pediatric palliative

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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/28484359/evaluation-of-congenital-heart-defects-treatment-options-establishment-of-pediatric-cardiology-cardiosurgery-in-bosnia-and-herzegovina
#2
REVIEW
Zijo Begic, Sanko Pandur, Edo Omerbasic, Almira Kadic, Mirza Halimic
INTRODUCTION: Modern pediatric cardiology mainly deals with congenital heart defects (CHD), as the most common congenital anomalies. In most cases CHD requires surgical or interventional treatment. GOAL: The goal of the research was to evaluate CHD treatment at Pediatric Clinic, University Clinical Center (UCC) Sarajevo, Bosnia and Herzegovina (B&H). UCC Sarajevo is the only institution in B&H where cardiac treatment of CHD in pediatric population is performed. Pediatric cardiosurgery has started to develop in Bosnia and Herzegovina in April 1997...
March 2017: Materia Socio-medica
https://www.readbyqxmd.com/read/28481160/single-center-experience-providing-palliative-care-to-pediatric-patients-with-end-stage-renal-disease
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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/28393785/modifying-risks-to-improve-outcome-in-cardiac-surgery-an-anesthesiologist-s-perspective
#11
REVIEW
Murali Chakravarthy
Challenging times are here for cardiac surgical and anesthesia team. The interventional cardiologist seem to have closed the flow of 'good cases' coming up for any of the surgery,; successful percutaneous interventions seem to be offering reasonable results in these patients, who therefore do not knock on the doors of the surgeons any more . It is a common experience among the cardiac anesthesiologists and surgeons that the type of the cases that come by now are high risk. That may be presence of comorbidities, ongoing medical therapies, unstable angina, uncontrolled heart failure and rhythm disturbances; and in patients with ischemic heart disease, the target coronaries are far from ideal...
April 2017: Annals of Cardiac Anaesthesia
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
#12
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/28347534/interstage-weight-gain-is-associated-with-survival-after-first-stage-single-ventricle-palliation
#13
Charles F Evans, John D Sorkin, Danielle S Abraham, Brody Wehman, Sunjay Kaushal, Geoffrey L Rosenthal
BACKGROUND: Low birth and operative weight have been identified as risk factors for death after first-stage single-ventricle palliation. We hypothesize that weight gain after the first-stage operation is associated with transplant-free interstage survival to admission for the second-stage operation. METHODS: We used historical data from the National Pediatric Cardiology Quality Improvement Collaborative database to conduct a longitudinal study to assess the association between weight gain and transplant-free interstage survival...
March 24, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28345747/survey-of-opioid-tapering-practices-of-pediatric-healthcare-providers-a-national-perspective
#14
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/28345115/counseling-practices-for-fetal-hypoplastic-left-heart-syndrome
#15
Michael J Walsh, George R Verghese, M Eric Ferguson, Nora F Fino, David J Goldberg, Sonal T Owens, Nelangi Pinto, Sinai C Zyblewski, Michael D Quartermain
While counseling parents of a fetus diagnosed with hypoplastic left heart syndrome (HLHS), pediatric cardiologists play a critical role in shaping a family's expectations for the months and years to come. However, techniques for the most effective counseling practices have not been studied, and significant variation among physicians is likely present. Web-based survey of pediatric cardiologists that perform fetal echocardiography using snowball sampling. 201 physicians responded (61% male, 81% from academic centers, and 95% from the U...
March 27, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28342432/-ethical-dilemmas-in-practice-of-medicine-child
#16
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/28341901/hypoplastic-left-heart-syndrome-is-not-associated-with-worse-clinical-or-neurodevelopmental-outcomes-than-other-cardiac-pathologies-after-the-norwood-sano-operation
#17
Billie-Jean Martin, I De Villiers Jonker, Ari R Joffe, Gwen Y Bond, Bryan V Acton, David B Ross, Charlene M T Robertson, Ivan M Rebeyka, Joseph Atallah
There is evidence to suggest that patients undergoing a Norwood for non-HLHS anatomy may have lower mortality than classic HLHS, but differences in neurodevelopmental outcome have not been assessed. Our objective was to compare survival and neurodevelopmental outcome during the same surgical era in a large, well-described cohort. All subjects who underwent a Norwood-Sano operation between 2005 and 2014 were included. Follow-up clinical, neurological, and developmental data were obtained from the Western Canadian Complex Pediatric Therapies Follow-up Program database...
March 24, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28335910/management-strategies-for-cln2-disease
#18
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/28330522/passive-range-of-motion-exercise-to-enhance-growth-in-infants-following-the-norwood-procedure-a-safety-and-feasibility-trial
#19
Linda M Lambert, Felicia L Trachtenberg, Victoria L Pemberton, Janine Wood, Shelley Andreas, Robin Schlosser, Teresa Barnard, Kaitlyn Daniels, Ann T Harrington, Nicholas Dagincourt, Thomas A Miller
OBJECTIVE: The aim of this study was to evaluate the safety and feasibility of a passive range of motion exercise programme for infants with CHD. Study design This non-randomised pilot study enrolled 20 neonates following Stage I palliation for single-ventricle physiology. Trained physical therapists administered standardised 15-20-minute passive range of motion protocol, for up to 21 days or until hospital discharge. Safety assessments included vital signs measured before, during, and after the exercise as well as adverse events recorded through the pre-Stage II follow-up...
March 23, 2017: Cardiology in the Young
https://www.readbyqxmd.com/read/28329463/current-practices-in-the-timing-of-stage-2-palliation
#20
James M Meza, Robert D B Jaquiss, Brett R Anderson, Michael-Alice Moga, James K Kirklin, George Sarris, William G Williams, Brian W McCrindle
BACKGROUND: Mortality through single-ventricle palliation remains high and the effect of the timing of stage 2 palliation (S2P) is not well understood. We investigated current practice patterns in the timing of S2P across two professional societies and compared them to actual practice patterns from two databases of patients who underwent S2P. METHODS: A ten-question survey was distributed to the members of the Congenital Heart Surgeons' Society (CHSS) and the European Congenital Heart Surgeons' Association (ECHSA)...
March 2017: World Journal for Pediatric & Congenital Heart Surgery
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