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Pediatric palliative care

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https://www.readbyqxmd.com/read/29139565/leukocyte-adhesion-defect-i-rare-primary-immune-deficiency
#1
Nitesh Tewari, Vijay Prakash Mathur, Vikender Singh Yadav, Prabhat Chaudhari
Leukocyte adhesion defect I is a rare disorder (1:1,000,000) caused by diminished expression of CD-18 β2 integrins on leukocytes leading to abnormal adhesion, migration, and chemotaxis. Clinical manifestations include delayed separation of umbilical cord, omphalitis, recurrent severe infections, impaired wound healing, persistent oral ulcers, and severe periodontitis in primary and permanent dentition. A 5-year-old girl, second-born child to parents with consanguinity, presented with pain and mobility of lower teeth...
November 15, 2017: Special Care in Dentistry
https://www.readbyqxmd.com/read/29139100/-guidelines-for-non-invasive-and-invasive-home-mechanical-ventilation-for-treatment-of-chronic-respiratory-failure-update-2017
#2
W Windisch, M Dreher, J Geiseler, K Siemon, J Brambring, D Dellweg, B Grolle, S Hirschfeld, T Köhnlein, U Mellies, S Rosseau, B Schönhofer, B Schucher, A Schütz, H Sitter, S Stieglitz, J Storre, M Winterholler, P Young, S Walterspacher
Today, invasive and non-invasive home mechanical ventilation have become a well-established treatment option. Consequently, in 2010 the German Society of Pneumology and Mechanical Ventilation (DGP) has leadingly published the guidelines on "Non-Invasive and Invasive Mechanical Ventilation for Treatment of Chronic Respiratory Failure". However, continuing technical evolutions, new scientific insights, and health care developments require an extensive revision of the guidelines.For this reason, the updated guidelines are now published...
November 2017: Pneumologie
https://www.readbyqxmd.com/read/29129740/survey-on-neonatal-end-of-life-comfort-care-guidelines-across-america
#3
Shelly Haug, Sara Farooqi, Christopher G Wilson, Andrew Hopper, Grace Oei, Brian Carter
CONTEXT: Infants of age < 1 year have the highest mortality rate in pediatrics. The American Academy of Pediatrics (AAP) published guidelines for palliative care in 2013, however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). OBJECTIVES: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America METHODS: After Institutional Review Board approval (516005), an anonymous, electronic survey was sent to members of the AAP Section on Neonatal-Perinatal Medicine...
November 9, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29128922/causes-of-renal-oligohydramnios-impact-on-prenatal-counseling-and-postnatal-outcome
#4
EDITORIAL
Sebastian Loos, Markus J Kemper
The presence of renal oligohydramnios (ROH) in a fetus has been associated in the past with a poor prognosis for survival, although recent studies have shown that survival has improved considerably due to the advances in neonatology and pediatric nephrology. In an article recently published in Pediatric Nephrology, evaluation of a large series by Mehler and colleagues confirms the improved prognosis, showing a survival rate of 32 of 38 (84%). In addition, only 12 of 35 (34%) neonates required renal replacement therapy...
November 11, 2017: Pediatric Nephrology: Journal of the International Pediatric Nephrology Association
https://www.readbyqxmd.com/read/29127099/individualised-advance-care-planning-in-children-with-life-limiting-conditions
#5
Erik A H Loeffen, Wim J E Tissing, Meggi A Schuiling-Otten, Chris C de Kruiff, Leontien C M Kremer, A A Eduard Verhagen
INTRODUCTION: In 2013, the Pediatric Association of the Netherlands launched an evidence-based guideline 'Palliative care for children'. To promote implementation in daily practice and hereby improve quality of paediatric palliative care, we aimed to develop a functional individualised paediatric palliative care plan (IPPCP) that covers physical, psychological, spiritual and social functioning, with great emphasis on the guideline's recommendations, advance care planning and patients' and parents' preferences and desires...
November 10, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29123342/palliative-care-for-children-with-cancer-in-the-middle-east-a-comparative-study
#6
Leila Khanali Mojen, Maryam Rassouli, Peyman Eshghi, Ali Akbari Sari, Majideh Heravi Karimooi
Introduction: High incidence rates of childhood cancer and the consequent deaths in the Middle East is one of the major reasons for the need for palliative care in these countries. Using the experiences and innovations of the other countries can provide a pattern for the countries of the region and lead to the development of palliative care in children. Therefore, the aim of this study is to compare the status of pediatric palliative care in Egypt, Lebanon, Jordan, Turkey, and Iran. Materials and Methods: This is a comparative study in which the information related to pediatric palliative care system in the target countries (from 2000 to 2016) has been collected, summarized, and classified by searching in databases, such as "PubMed, Scopus, Google scholar, Ovid, and science direct...
October 2017: Indian Journal of Palliative Care
https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#7
Savithri Nageswaran, Anna Hurst, Andrea Radulovic
OBJECTIVE: Prognostication of survival is difficult in children with life-limiting illnesses because of the rarity of these conditions and technological advances improving survival. The objective of this article is to describe the characteristics of children with life-limiting illnesses who survived longer than the expectations of health-care providers. STUDY DESIGN: This is a retrospective cohort study conducted in a tertiary-care children's hospital in North Carolina...
January 1, 2017: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/29063727/nurse-driven-analgesia-and-sedation-in-pediatric-patients-with-univentricular-hearts-requiring-extracorporeal-life-support-after-first-stage-palliation-surgery-a-pilot-study
#8
Jörg Michel, Michael Hofbeck, Ines Gerbig, Vanya Icheva, Ellen Heimberg, Walter Jost, Christian Schlensak, Matthias Kumpf, Gunnar Blumenstock, Felix Neunhoeffer
BACKGROUND: Few data are available regarding requirements of sedation and analgesia in children during extracorporeal life support. AIMS: The aim of this study was to evaluate if children with functionally univentricular hearts on extracorporeal life support after first-stage palliation surgery have higher requirement of analgesics and sedatives compared with children without extracorporeal life support using a goal-directed nurse-driven analgesia and sedation protocol...
December 2017: Paediatric Anaesthesia
https://www.readbyqxmd.com/read/29045241/taking-assent-to-new-heights-a-case-report-on-do-not-resuscitate-status-in-pediatric-palliative-care-procedures
#9
Heather A Ballard, Santhanam Suresh
Dying adolescents presenting for palliative procedures have complicated developmental and ethical issues, especially when reconsidering do-not-resuscitate orders. Though the American Academy of Pediatrics has guidelines, there is limited information in the literature on how to take care of these patients. We describe the case of a 14-year-old patient presenting to the interventional radiology suite for management of superior vena cava syndrome. The patient's goals of treatment were elucidated through a comprehensive care team consisting of the procedural and oncology teams...
October 17, 2017: A & A Case Reports
https://www.readbyqxmd.com/read/28982637/pediatric-chronic-patients-at-outpatient-clinics-a-study-in-a-latin-american-university-hospital
#10
Renata A Alveno, Caroline V Miranda, Caroline G Passone, Aurora R Waetge, Elza S Hojo, Sylvia C L Farhat, Vicente Odone-Filho, Uenis Tannuri, Werther B Carvalho, Magda Carneiro-Sampaio, Clovis A Silva
OBJECTIVE: To describe the characteristics of children and adolescentes with chronic diseases of outpatient clinics at a tertiary university hospital. METHODS: A cross-sectional study was performed with 16,237 patients with chronic diseases followed-up in one year. The data were collected through the electronic system, according to the number of physician appointments in 23 pediatric specialties. Patients were divided in two groups: children (0-9 years) and adolescents (10-19 years)...
October 2, 2017: Jornal de Pediatria
https://www.readbyqxmd.com/read/28963113/disparities-in-pediatric-palliative-care-an-opportunity-to-strive-for-equity
#11
COMMENT
Kira Bona, Joanne Wolfe
No abstract text is available yet for this article.
October 2017: Pediatrics
https://www.readbyqxmd.com/read/28956672/proxy-reported-quality-of-life-and-family-impact-for-children-followed-longitudinally-by-a-pediatric-palliative-care-team
#12
Meaghann Weaver, Christopher Wichman, Cheryl Darnall, Sue Bace, Catherine Vail, Andrew MacFadyen
BACKGROUND: One goal of pediatric palliative care is to maintain quality of life for children and their families. Quality-of-life investigations may be enhanced by considering clinically important metrics in addition to statistical significance. OBJECTIVE: The purpose of this study was to longitudinally evaluate the effect of time on quality of life and family impact for pediatric palliative care patients across all diagnoses and ages. DESIGN: This prospective quality-of-life study included administration of a 23-item PedsQL™ Measurement Model to evaluate for physical, emotional, social, and cognitive dimensions of the child's quality of life and a 36-item PedsQL Family Impact Module to assess for the familial impact at time of initial palliative care consultation, Month 6, and Month 12...
September 28, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28949870/decision-making-in-pediatric-oncology-views-of-parents-and-physicians-in-two-european-countries
#13
Domnita O Badarau, Katharina Ruhe, Thomas Kühne, Eva De Clercq, Anca Colita, Bernice S Elger, Tenzin Wangmo
BACKGROUND: Decision making is a highly complex task when providing care for seriously ill children. Physicians, parents, and children face many challenges when identifying and selecting from available treatment options. METHODS: This qualitative interview study explored decision-making processes for children with cancer at different stages in their treatment in Switzerland and Romania. RESULTS: Thematic analysis of interviews conducted with parents and oncologists identified decision making as a heterogeneous process in both countries...
January 2017: AJOB Empirical Bioethics
https://www.readbyqxmd.com/read/28944533/parents-spend-an-average-of-nine-hours-a-day-providing-palliative-care-for-children-at-home-and-need-to-maintain-an-average-of-five-life-saving-devices
#14
P Lazzarin, B Schiavon, L Brugnaro, F Benini
AIM: This Italian study investigated home-based palliative care for young children and how long it took parents to meet their needs. METHODS: The study population consisted of 33 families with a child under the responsibility of the Veneto Regional Center for Pediatric Palliative Care, northern Italy, who needed medical support in at least two of the following areas: respiratory, feeding, pain and seizures. RESULTS: The children had a mean age of 6...
September 25, 2017: Acta Paediatrica
https://www.readbyqxmd.com/read/28937333/provider-prioritized-domains-of-quality-in-pediatric-home-based-hospice-and-palliative-care-a-study-of-the-ohio-pediatric-palliative-care-and-end-of-life-network
#15
Rachel Thienprayoon, Melissa San Julian Mark, Daniel Grossoehme
BACKGROUND: Children receiving hospice and palliative care (HPC) differ from adults in important ways. Children are more likely to have rare diagnoses, less likely to have cancer, have longer lengths of stay on hospice, and are more likely to be technology dependent than adults. The National Consensus Project (NCP) in Palliative Care established domains of quality for HPC, but these domains have not been evaluated for applicability in children. OBJECTIVES: This study aims to establish consensus stakeholder-prioritized domains of high-quality pediatric home-based hospice and palliative care (HBHPC)...
September 22, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28916014/integrated-behavioral-health-care-in-pediatric-subspecialty-clinics
#16
REVIEW
Chase Samsel, Monique Ribeiro, Patricia Ibeziako, David R DeMaso
Comorbid behavioral and physical health conditions are accompanied by troubling symptom burden, functional impairment, and treatment complexity. Pediatric subspecialty care clinics offer an opportunity for the implementation of integrated behavioral health (BH) care models that promote resiliency. This article reviews integrated BH care in oncology, palliative care, pain, neuropsychiatry, cystic fibrosis, and transplantation. Examples include integrated care mandates, standards of care, research, and quality improvement by child and adolescent psychiatrists (CAPs) and allied BH clinicians...
October 2017: Child and Adolescent Psychiatric Clinics of North America
https://www.readbyqxmd.com/read/28915078/pediatric-specific-end-of-life-care-quality-measures-an-unmet-need-of-a-vulnerable-population
#17
Emily E Johnston, Abby R Rosenberg, Arif H Kamal
We must ensure that the 20,000 US children (age 0 to 19 years) who die as a result of serious illness annually receive high-quality end-of-life care. Ensuring high-quality end-of-life care requires recognition that pediatric end-of-life care is conceptually and operationally different than that for adults. For example, in-hospital adult death is considered an outcome to be avoided, whereas many pediatric families may prefer hospital death. Because pediatric deaths are comparatively rare, not all centers offer pediatric-focused palliative care and hospice services...
October 2017: Journal of Oncology Practice
https://www.readbyqxmd.com/read/28912041/postoperative-b-type-natriuretic-peptide-monitoring-for-the-assessment-of-the-magnitude-of-shunting-through-blalock-taussig-anastomoses
#18
Cristian Mirabile, Alessandra Mazzola, Liana Valeanu, Vanessa Lopez-Lopez, Claudio Barbanti, Camilla Biselli, Carole Hennequin, Sophie Malekzadeh-Milani, Mirela Bojan
BACKGROUND: The Modified Blalock-Taussig shunt (MBTS) is the most common palliative operation performed in patients with complex cardiac defects. Postoperative morbidity and mortality rates are high, mainly due to shunt thrombosis and over-shunting. Over-shunting may be difficult to identify postoperatively based on conventional criteria. Since plasma B-type natriuretic peptide (BNP) concentrations correlate with the magnitude of shunting in various left-to-right shunt cardiac defects, we investigated its ability to identify postoperative MBTS over-shunting...
December 15, 2017: International Journal of Cardiology
https://www.readbyqxmd.com/read/28900469/necrotic-ulcerated-and-bleeding-striae-distensae-following-bevacizumab-in-a-palliative-setting-for-gliobastomatosis-cerebri
#19
Olivia Laugier, Laetitia Padovani, Arnauld Verschuur, Caroline Gaudy-Marqueste, Nicolas André
Glioblastoma cerebri is a rare paediatric malignancy with dismal prognosis [Chappé C, Riffaud L, and Tréguier C et al (2013) Primary gliomatosis cerebri involving gray matter in pediatrics: a distinct entity? A multicenter study of 14 casesChilds Nerv Syst29 565-571 https://doi.org/10.1007/s00381-012-2016-1 PMID: 23306961] and no established standard of care. Here, we report a case of ulcerated and bleeding striae distensae in a teenage girl following palliative treatment with bevacizumab and steroids.
2017: Ecancermedicalscience
https://www.readbyqxmd.com/read/28887267/patterns-and-outcomes-of-care-in-children-with-advanced-heart-disease-receiving-palliative-care-consultation
#20
Katherine L Marcus, Emily M Balkin, Hasan Al-Sayegh, Elyssa Guslits, Elizabeth D Blume, Clement Ma, Joanne Wolfe
CONTEXT: While access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD). OBJECTIVES: To examine features of subspecialty PPC involvement for children with AHD. METHODS: Retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016. RESULTS: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/non-structural heart disease...
September 5, 2017: Journal of Pain and Symptom Management
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