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Pediatric palliative care

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https://www.readbyqxmd.com/read/28916014/integrated-behavioral-health-care-in-pediatric-subspecialty-clinics
#1
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
#2
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...
September 15, 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
#3
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...
September 6, 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
#4
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
#5
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
https://www.readbyqxmd.com/read/28866891/integration-of-hypnosis-into-pediatric-palliative-care
#6
Stefan J Friedrichsdorf, Daniel P Kohen
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities...
June 27, 2017: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/28864435/patterns-of-instability-associated-with-endotracheal-suctioning-in-infants-with-single-ventricle-physiology
#7
Lyvonne N Tume, Paul Baines, Rafael Guerrero, Robert Johnson, Paul Ritson, Elaine Scott, Philip Arnold, Laura Walsh
BACKGROUND: In infants with single-ventricle physiology, endotracheal suctioning poses risks because of the instability between pulmonary and systemic blood flow. OBJECTIVE: To examine processes and adverse events associated with endotracheal suctioning in the first 48 hours after 3 surgical procedures: the Norwood or Norwood-Sano procedure, pulmonary artery banding, and the modified Blalock-Taussig shunt. METHODS: Prospective observational study in a pediatric intensive care unit...
September 2017: American Journal of Critical Care: An Official Publication, American Association of Critical-Care Nurses
https://www.readbyqxmd.com/read/28860717/development-of-idursulfase-therapy-for-mucopolysaccharidosis-type-ii-hunter-syndrome-the-past-the-present-and-the-future
#8
REVIEW
David Ah Whiteman, Alan Kimura
Mucopolysaccharidosis type II (MPS II; Hunter syndrome; OMIM 309900) is a rare, multisystemic, progressive lysosomal storage disease caused by deficient activity of the iduronate-2-sulfatase (I2S) enzyme. Accumulation of the glycosaminoglycans dermatan sulfate and heparan sulfate results in a broad range of disease manifestations that are highly variable in presentation and severity; notably, approximately two-thirds of individuals are affected by progressive central nervous system involvement. Historically, management of this disease was palliative; however, during the 1990s, I2S was purified to homogeneity for the first time, leading to cloning of the corresponding gene and offering a means of addressing the underlying cause of MPS II using enzyme replacement therapy (ERT)...
2017: Drug Design, Development and Therapy
https://www.readbyqxmd.com/read/28853208/clinical-outcomes-and-toxicity-following-palliative-radiotherapy-for-childhood-cancers
#9
Kimberley S Mak, Stephanie W Lee, Tracy A Balboni, Karen J Marcus
BACKGROUND: Few reports of palliative radiotherapy (RT) for pedialltric malignancies have been published. We described clinical indications, outcomes, and toxicities for children who received palliative RT. PROCEDURE: Pediatric patients (age ≤18 years) treated with palliative RT for incurable cancer from January 1 2008 to February 26, 2014 were included. Diagnosis, details of RT, treatment response, toxicity, and survival were retrospectively reviewed. RESULTS: Forty-six patients received 76 RT courses...
August 29, 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/28844985/pediatric-advance-care-planning-pacp-for-teens-with-cancer-and-their-families-design-of-a-dyadic-longitudinal-rcct
#10
Katherine B Curtin, Anne E Watson, Jichuan Wang, Obianuju C Okonkwo, Maureen E Lyon
Cancer is the leading cause of disease-related death for adolescents and young adults (AYAs) in the United States. Parents of AYAs with life-threatening illnesses have expressed the desire to talk to their children about end of life (EOL) care, yet, like caregivers of adult patients, struggle to initiate this conversation. Building Evidence for Effective Palliative/End of Life Care for Teens with Cancer is a longitudinal, randomized, controlled, single-blinded clinical trial aimed at evaluating the efficacy of FAmily CEntered disease-specific advance care planning (ACP) for teens with cancer (FACE-TC)...
August 24, 2017: Contemporary Clinical Trials
https://www.readbyqxmd.com/read/28835736/health-care-professionals-experiences-and-needs-when-delivering-end-of-life-care-to-children-a-qualitative-study
#11
Eva Bergsträsser, Eva Cignacco, Patricia Luck
Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations...
2017: Palliative Care
https://www.readbyqxmd.com/read/28831564/post-operative-outcomes-in-children-undergoing-fontan-palliation-in-a-regionalized-surgical-system
#12
Billie-Jean Martin, David B Ross, Mohammed Al Aklabi, Joyce Harder, John D Dyck, Ivan M Rebeyka
Evidence suggests that outcomes in pediatric cardiac surgery are improved by consolidating care into centers of excellence. Our objective was to determine if outcomes are equivalent in patients across a large regional referral base, or if patients from centers without on-site surgery are at a disadvantage. Since 1996, all pediatric cardiac surgery has been offered at one of two centers within the region assessed, with the majority being performed at Stollery Children's Hospital. All patients who underwent a Fontan between 1996 and 2016 were included...
August 22, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28829011/-we-never-speak-about-death-healthcare-professionals-views-on-palliative-care-for-inpatients-in-tanzania-a-qualitative-study
#13
E Grace Lewis, Lloyd L Oates, Jane Rogathi, Ashanti Duinmaijer, Aisa Shayo, Simon Megiroo, Barthlomew Bakari, Felicity Dewhurst, Richard W Walker, Matt Dewhurst, Sarah Urasa
OBJECTIVE: Little is known about the current views and practices of healthcare professionals (HCPs) in Sub-Saharan Africa (SSA) regarding delivery of hospital palliative care. The present qualitative study explored the views of nursing staff and medical professionals on providing palliative and end-of-life care (EoLC) to hospital inpatients in Tanzania. METHOD: Focus group discussions were conducted with a purposive sample of HCPs working on the medical and pediatric wards of the Kilimanjaro Christian Medical Centre, a tertiary referral hospital in northern Tanzania...
August 22, 2017: Palliative & Supportive Care
https://www.readbyqxmd.com/read/28808789/palliative-care-for-children-with-a-yet-undiagnosed-syndrome
#14
Jessica I Hoell, Jens Warfsmann, Gabriele Gagnon, Laura Trocan, Stefan Balzer, Prasad T Oommen, Arndt Borkhardt, Gisela Janßen, Michaela Kuhlen
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7...
August 14, 2017: European Journal of Pediatrics
https://www.readbyqxmd.com/read/28807702/factors-associated-with-use-of-u-s-community-based-palliative-care-for-children-with-life-limiting-or-life-threatening-illnesses-and-their-families-an-integrative-review
#15
REVIEW
Jackelyn Y Boyden, Martha A Q Curley, Janet A Deatrick, Mary Ersek
CONTEXT: As children with life-limiting and life-threatening illnesses live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. OBJECTIVE: The purpose of this integrative review paper is to explore factors that are associated with the use of CBPPC for U...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28807699/communication-challenges-of-oncologists-and-intensivists-caring-for-pediatric-oncology-patients-a-qualitative-study
#16
Folasade Odeniyi, Pamela G Nathanson, Theodore E Schall, Jennifer K Walter
CONTEXT: The families of oncology patients requiring intensive care often face increasing complexity in communication with their providers, particularly when patients are cared for by providers from different disciplines. OBJECTIVE: To describe experiences and challenges faced by pediatric oncologists and intensivists and how the oncologist-intensivist relationship impacts communication and initiation of goals of care discussions (GCDs). METHODS: We conducted semi-structured interviews with a convenience sample of ten physicians, including pediatric oncology and intensive care attendings and fellows...
August 11, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28807643/-use-of-subcutaneous-route-for-comfort-care%C3%A2-in-neonatal-palliative-population-systematic-review-and-survey-of-practices-in-france
#17
N Pouvreau, J Tandonnet, O Tandonnet, L Renesme
INTRODUCTION: Subcutaneous hydration (hypodermoclysis) and drug administration is a widely used method of analgesic therapy in adult palliative care medicine. Very little is known about its use in neonatal medicine. Evidence-based guidelines do not exist due to a lack of data. In this study, the advantages of subcutaneous analgesic therapy in terms of comfort in neonatal palliative care situations were investigated. METHODS: This report details the results of a systematic review associated with a survey in neonatal intensive care units (NICUs) and pediatric palliative care departments (PPCTs) in France...
August 11, 2017: Archives de Pédiatrie: Organe Officiel de la Sociéte Française de Pédiatrie
https://www.readbyqxmd.com/read/28804708/pediatric-palliative-care-initiative-in-cambodia
#18
Mahmut Yaşar Çeliker, Yos Pagnarith, Kazumi Akao, Dim Sophearin, Sokchea Sorn
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia...
2017: Frontiers in Public Health
https://www.readbyqxmd.com/read/28797863/palliative-care-development-in-mongolia
#19
Odontuya Davaasuren, Frank Ferris
CONTEXT: Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. METHODS: Systematic reviews and observational studieson palliative care development in Mongolia have taken place overthe past 16 years. RESULTS: Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department...
August 7, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#20
Rachna May, Jess Thompson
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population...
August 4, 2017: Journal of Palliative Medicine
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