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Pediatric hospice

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https://www.readbyqxmd.com/read/29121791/unexpected-survivors-children-with-life-limiting-conditions-of-uncertain-prognosis
#1
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/28945629/critical-care-resource-utilization-and-outcomes-of-children-with-moderate-traumatic-brain-injury
#2
Theerada Chandee, Vivian H Lyons, Monica S Vavilala, Vijay Krishnamoorthy, Nophanan Chaikittisilpa, Arraya Watanitanon, Abhijit V Lele
OBJECTIVES: To characterize admission patterns, critical care resource utilization, and outcomes in moderate pediatric traumatic brain injury. DESIGN: Retrospective cohort study. SETTING: National Trauma Data Bank. PATIENTS: Children under 18 years old with a diagnosis of moderate traumatic brain injury (admission Glasgow Coma Scale score of 9-13) in the National Trauma Data Bank between 2007 and 2014. MEASUREMENT AND MAIN RESULTS: We examined clinical characteristics, critical care resource utilization, and discharge outcomes...
September 22, 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/28942746/rapid-autopsy-of-a-patient-with-recurrent-anaplastic-ependymoma
#3
Katharine Rae Lange, Cheryl Fischer, Prajwal Rajappa, Scott Connors, David Pisapia, Jeffrey P Greenfield, Himisha Beltran, Mark Rubin, Juan Miguel Mosquera, Yasmin Khakoo
OBJECTIVE: Our aim was to outline a procedure for obtaining a rapid autopsy in order to collect high-quality postmortem tissue for genomic analysis. METHODS: This report details a bi-institutional collaborative effort to coordinate a rapid autopsy for a pediatric patient who had died at home. We discuss the scientific rationale for offering a rapid autopsy to caregivers of pediatric patients as well as parental perspectives on broaching the subject of autopsy. We then review the logistics and coordination involved with planning a rapid autopsy and the sequence of events needed to maximize tissue quality...
September 25, 2017: Palliative & Supportive Care
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
#4
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/28915078/pediatric-specific-end-of-life-care-quality-measures-an-unmet-need-of-a-vulnerable-population
#5
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/28853208/clinical-outcomes-and-toxicity-following-palliative-radiotherapy-for-childhood-cancers
#6
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/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
#7
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/28797863/palliative-care-development-in-mongolia
#8
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/28602938/-let-s-bring-her-home-first-patient-characteristics-and-place-of-death-in-specialized-pediatric-palliative-home-care
#9
Hans Ulrich Bender, Martin Bernhard Riester, Gian Domenico Borasio, Monika Führer
CONTEXT: Specialized pediatric palliative home care (SPPHC) is the main pediatric palliative care structure in Germany. Detailed data on patient characteristics and care are sparse. Describing this population in terms of diagnoses and care needs is essential for further development of palliative care services for these patients. OBJECTIVES: We asked whether the population at our center 1) was representative compared with national mortality statistics; 2) showed differences in the clinical course among the four diagnostic categories established by the Association for Children with Terminal Conditions/Royal College of Paediatrics and Child Health; and 3) was different to published populations in pediatric palliative care regarding diagnoses, care, and place of death...
June 8, 2017: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28602119/improving-the-quality-of-end-of-life-care-in-pediatric-oncology-patients-through-the-early-implementation-of-palliative-care
#10
Lauren Ranallo
Providing end-of-life care to children with cancer is most ideally achieved by initiating palliative care at the time of diagnosis, advocating for supportive care throughout the treatment trajectory, and implementing hospice care during the terminal phase. The guiding principles behind offering palliative care to pediatric oncology patients are the prioritization of providing holistic care and management of disease-based symptoms. Pediatric hematology-oncology nurses and clinicians have a unique responsibility to support the patient and family unit and foster a sense of hope, while also preparing the family for the prognosis and a challenging treatment trajectory that could result in the child's death...
November 2017: Journal of Pediatric Oncology Nursing: Official Journal of the Association of Pediatric Oncology Nurses
https://www.readbyqxmd.com/read/28578815/three-years-experience-with-the-first-pediatric-hospice-in-asia
#11
Kohei Ando, Makoto Nabetani, Nobuyuki Yotani, Tatsushi Rin, Hiroyuki Sano
OBJECTIVE: Pediatric hospice has been the adoption of several service provision models in highly developed countries such as UK, Germany, Australia or Canada for a few decades, yet it has seldom been the case in the Asian Continent. This study aimed to evaluate the newest challenge for the children with Life-threatening illness (LTI) and described the characteristic of pediatric palliative care at the first pediatric hospice in Japan. METHODS: A retrospective review of all patients at our pediatric hospice in these three years was conducted...
May 31, 2017: Brain & Development
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/28260997/children-with-intellectual-disability-and-hospice-utilization
#13
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/28042068/empowering-bereaved-parents-through-the-development-of-a-comprehensive-bereavement-program
#14
Jennifer M Snaman, Erica C Kaye, Deena R Levine, Brittany Cochran, Robin Wilcox, Charlene K Sparrow, Nancy Noyes, Lisa Clark, Wendy Avery, Justin N Baker
Parents who experience the loss of a child have unique and valuable insights into the grief journey and can help health care providers identify key components intrinsic to the development, implementation, and maintenance of a comprehensive bereavement program. The bereavement program at St. Jude Children's Research Hospital was developed by pediatric palliative care experts in collaboration with bereaved parents to standardize and improve the institutional support provided to families around and after the death of a child...
December 30, 2016: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/28018868/pediatric-palliative-care-in-canada-in-2012-a-cross-sectional-descriptive-study
#15
Kimberley Widger, Dawn Davies, Adam Rapoport, Christina Vadeboncoeur, Stephen Liben, Amrita Sarpal, Simone Stenekes, Claude Cyr, Lysanne Daoust, Marie-Claude Grégoire, Marli Robertson, Heather Hodgson-Viden, Julie Laflamme, Harold Siden
BACKGROUND: Pediatric palliative care focuses on comprehensive symptom management and enhancing quality of life for children with life-threatening conditions and their families. Our aim was to describe Canadian programs that provided specialized pediatric palliative care in 2012 and the children who received it and to estimate the proportion of children who might benefit that received specialized care. METHODS: A cross-sectional descriptive design was used. Specialized pediatric palliative care programs were included in the study if they offered multidisciplinary consulting pediatric palliative care services to a wide range of children and served all populations of children with life-threatening illness regardless of diagnosis...
October 2016: CMAJ Open
https://www.readbyqxmd.com/read/28000411/the-role-of-radiation-therapy-in-palliative-care-of-children-with-advanced-cancer-clinical-outcomes-and-patterns-of-care
#16
Sumeeta Varma, Debra L Friedman, Mark J Stavas
BACKGROUND: There are few published data to guide the use and timing of palliative radiation therapy (RT) in children. We aimed to determine the clinical outcomes of palliative RT in children and the relationship with palliative care and hospice referrals. PROCEDURE: A retrospective chart review was performed on all patients younger than 18 years who received palliative RT in our clinic from January 2005 to January 2015. RESULTS: In the specified time period, 50 children underwent 83 courses of palliative RT...
May 2017: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/27837156/geographic-variation-in-california-pediatric-hospice-care-for-children-and-adolescents
#17
Lisa C Lindley, Sheri L Edwards
OBJECTIVE: To map and describe the geographic distribution of pediatric hospice care need versus supply in California over a 4-year time period (2007-2010). METHODS: Multiple databases were used for this descriptive longitudinal study. The sample consisted of 2036 children and adolescent decedents and 136 pediatric hospice providers. Geocoded data were used to create the primary variables of interest for this study-need and supply of pediatric hospice care. Geographic information systems were used to create heat maps for analysis...
January 1, 2016: American Journal of Hospice & Palliative Care
https://www.readbyqxmd.com/read/27801708/pediatric-critical-care-transport-as-a-conduit-to-terminal-extubation-at-home-a-case-series
#18
Corina Noje, Meghan L Bernier, Philomena M Costabile, Bruce L Klein, Sapna R Kudchadkar
OBJECTIVES: To present our single-center's experience with three palliative critical care transports home from the PICU for terminal extubation. DESIGN: We performed a retrospective chart review of patients transported between January 1, 2012, and December 31, 2014. SETTING: All cases were identified from our institutional pediatric transport database. PATIENTS: Patients were terminally ill children unable to separate from mechanical ventilation in the PICU, who were transported home for terminal extubation and end-of-life care according to their families' wishes...
January 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/27797636/multiple-complex-chronic-conditions-and-pediatric-hospice-utilization-among-california-medicaid-beneficiaries-2007-2010
#19
Lisa C Lindley
BACKGROUND: Over 42,000 children die each year in the United States, including many with multiple complex chronic conditions (MCCCs), but little is known about whether the presence of MCCCs influences families to utilize pediatric hospice care. OBJECTIVE: The study objective was to examine the relationship between MCCCs and pediatric hospice utilization among Medicaid beneficiaries. METHODS: A retrospective, longitudinal cohort design was conducted with 2007-2010 California Medicaid data to examine the relationship between MCCCs (i...
March 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/27693902/the-effect-of-pediatric-palliative-care-policy-on-hospice-utilization-among-california-medicaid-beneficiaries
#20
Lisa C Lindley
CONTEXT: California implemented pediatric palliative care legislations that allowed children to receive curative and supportive care from diagnosis of a life-threatening serious illness in 2010. Palliative care policies may improve access to hospice care as children near end of life. OBJECTIVES: The aim of this study was to examine the effect of the palliative care policy on hospice utilization for children and their families was investigated. METHODS: Using 2007 and 2010 California Medicaid data, a difference-in-difference analysis was conducted to analyze hospice use (i...
November 2016: Journal of Pain and Symptom Management
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