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Pediatric palliative

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https://www.readbyqxmd.com/read/28416424/-first-requests-for-a-regional-pediatric-palliative-care-team-a-prospective-and-observational-study
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
https://www.readbyqxmd.com/read/28322074/speaking-a-different-language
#12
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
#13
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
#14
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
#15
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
#16
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/28274399/radiation-and-subsequent-reirradiation-outcomes-in-the-treatment-of-diffuse-intrinsic-pontine-glioma-and-a-systematic-review-of-the-reirradiation-literature
#17
REVIEW
Christopher Freese, Vinita Takiar, Maryam Fouladi, Mariko DeWire, John Breneman, Luke Pater
PURPOSE: Diffuse intrinsic pontine glioma (DIPG) is a devastating pediatric disease, with a median survival of <1 year. Here, we review our institution's DIPG experience over an 8-year interval and perform a systematic review of the literature, specifically evaluating reports of reirradiation (reRT) for DIPG. METHODS AND MATERIALS: We retrospectively reviewed the medical records of 26 patients who underwent definitive intensity modulated radiation therapy (IMRT) for DIPG at a single institution between 2007 and 2015...
March 2017: Practical Radiation Oncology
https://www.readbyqxmd.com/read/28273758/aspects-and-intensity-of-pediatric-palliative-case-management-provided-by-a-hospital-based-case-management-team
#18
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
#19
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
https://www.readbyqxmd.com/read/28263951/the-memory-quilt-heart-and-hands-learning-for-palliative-care
#20
Patricia Flanagan, Nancy DeMetro
Nursing students' learning of adult and pediatric palliative care is a daunting experience. An effective initial teaching strategy using a Memory Quilt activity can improve nursing students' interpersonal and communication skills and help prepare them for end-of-life caring. These skills help students meet patient and family needs, as they transition to care settings.
April 2017: Journal of Christian Nursing: a Quarterly Publication of Nurses Christian Fellowship
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