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Pediatric palliative care

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https://www.readbyqxmd.com/read/28345747/survey-of-opioid-tapering-practices-of-pediatric-healthcare-providers-a-national-perspective
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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
#10
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
#11
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
https://www.readbyqxmd.com/read/28260997/children-with-intellectual-disability-and-hospice-utilization
#12
Lisa C Lindley, Mari Beth Colman, John T Meadows
Over 42,000 children die each year in the United States, including those with intellectual disability (ID). Survival is often reduced when children with intellectual disability also suffer from significant motor dysfunction, progressive congenital conditions, and comorbidities. Yet, little is known about hospice care for children with intellectual disability. The purpose of this study was to explore the relationship between intellectual disability and hospice utilization. Additionally, we explored whether intellectual disability combined with motor dysfunction, progressive congenital conditions, and comorbidities influenced pediatric hospice utilization...
February 2017: Journal of Hospice and Palliative Nursing: JHPN
https://www.readbyqxmd.com/read/28259368/practices-and-attitudes-of-canadian-cardiologists-caring-for-patients-with-trisomy-18
#13
Aisling A Young, Christy Simpson, Andrew E Warren
Trisomy 18 (T18) is a genetic disorder with cardiac lesions in up to 90% of patients. Cardiac surgery is not frequently offered because of the overall poor prognosis, although this has recently been challenged. Our study aimed to explore the practices and attitudes of Canadian pediatric cardiologists managing T18 patients. We administered a survey to pediatric cardiologists attending the Canadian Cardiovascular Congress, Canadian Pediatric Cardiology Association Business Meeting. There were 30 respondents. Most (67%) supported comfort care for affected patients with a heart lesion...
November 17, 2016: Canadian Journal of Cardiology
https://www.readbyqxmd.com/read/28206733/end-of-life-decisions-in-34-slovene-intensive-care-units-a-nationwide-prospective-clinical-study
#14
Miha Orazem, Urh Groselj, Manca Stojan, Neza Majdic, Gaj Vidmar, Stefan Grosek
BACKGROUND: To determine how end-of-life decisions (EOLD) on limitations of life- sustaining treatment (LST) are made in three different types of intensive care units (ICUs) in Slovenia. METHODS: A national multicenter prospective study among 31 adult and three pediatric/neonatal ICUs (PICUs). The questionnaire form on EOLD was designed to assess the clinical practice. Data were collected between January 1, 2013, and March 31, 2013. For statistical analysis we used IBM® SPSS® Statistics 20 software package...
February 15, 2017: Minerva Anestesiologica
https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#15
Jamie Burns, Kevin Jackson, Kathy A Sheehy, Julia C Finkel, Zenaide M Quezado
OBJECTIVE: To evaluate the effect of dexmedetomidine infusions in patients with advanced malignancies, advanced heart disease, or after stem cell transplantation (SCT), who during end-of-life care had pain and/or agitation unresponsive to conventional therapies. BACKGROUND: Pediatric patients with intractable advanced malignancies, end-stage congenital heart diseases, or after SCT can suffer a great deal during end of life. Pain, drowsiness, fatigue, irritability, and worrying are experienced frequently, considered distressing, and are strongly associated with reductions in health-related quality-of-life scores...
February 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28186835/preparing-pediatric-healthcare-professionals-for-end-of-life-care-discussions-an-exploratory-study
#16
Amanda Henderson, Jeanine Young, Anthony Herbert, Natalie Bradford, Lee-Anne Pedersen
BACKGROUND: Preparedness to initiate end-of-life (EoL) discussions is a confronting and daunting task for all healthcare professionals. We conducted a group interview to explore healthcare professionals' experiences of preparing for EoL discussions with the patient and their family in a pediatric context. AIM: To identify what pediatric healthcare professionals consider important when preparing for an EoL discussion. METHODS: A qualitative design using a group interview...
February 10, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28168999/palliative-care-approaches-to-neonates-with-chronic-respiratory-failure
#17
Nicolas F M Porta
Neonates with chronic respiratory failure have uncertain prognosis and can face significant treatment burden. As the trajectory of the illness becomes more concerning, consultation with a pediatric palliative service should be considered, especially as therapeutic options shift from standard to "innovative." Benefits include as follows: supporting emotionally conflicted providers and parents, maintaining transparency in determination of goals, and balancing medical progress with each individual patient's and family's best interests...
February 3, 2017: Seminars in Perinatology
https://www.readbyqxmd.com/read/28156553/are-families-the-barrier-evaluating-attitudes-toward-early-integration-of-palliative-care-in-pediatric-hematopoietic-stem-cell-transplant
#18
Justin N Baker
112 Background: The benefits of early integration of palliative care (PC) in oncology have been well established yet, there remain significant barriers to PC integration, especially in the setting of pediatric hematopoietic stem cell transplant (HSCT). HSCT patients are prone to a great degree of treatment related toxicity and are at high risk for morbidity and mortality and, while ideally suited to benefit, inherent factors in this cure oriented field preclude the integration of PC services. Most notably, family receptivity to PC is often perceived as a barrier in HSCT yet there is no data on family attitudes toward PC in this setting...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28156496/influence-of-early-phase-clinical-trial-enrollment-on-patterns-of-end-of-life-care-for-children-with-advanced-cancer
#19
Chalinee Monsereenusorn, Clement Ma, Hasan Al-Sayegh, Joanne Wolfe, Carlos Rodriguez-Galindo
151 Background: Early phase clinical trials are critical to enhancing therapies for children with advanced cancer. However, trial enrollment may intensify end-of-life (EOL) care. We evaluated patterns of EOL care for patients at a large cancer center. METHODS: Single-center, retrospective cohort study of pediatric oncology patients, ages 6 months-21 years, who died in 2010-2014. We queried electronic medical records to assess frequencies of medical procedures (e.g. intubations), clinic visits, and hospital admissions in the last 6 months of life...
October 9, 2016: Journal of Clinical Oncology: Official Journal of the American Society of Clinical Oncology
https://www.readbyqxmd.com/read/28144610/pediatric-hepatocellular-carcinoma-challenges-and-solutions
#20
REVIEW
Irene Schmid, Dietrich von Schweinitz
Hepatocellular carcinoma (HCC) is a very rare entity in children, making it nearly impossible to orchestrate Phase II/III studies even as multinational cooperative trials. In contrast to adults, nearly 50% of the children have a response (α-fetoprotein decline and/or tumor shrinkage) to chemotherapeutic agents such as cisplatin and doxorubicin (PLADO), demonstrating that HCC in childhood can be chemotherapy sensitive. As a result, the main treatment options in pediatric HCC focus on systemic drug therapies and resection as the central therapy...
2017: Journal of Hepatocellular Carcinoma
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