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https://www.readbyqxmd.com/read/29925723/regenerative-therapy-for-patients-with-congenital-heart-disease
#1
Naritaka Kimura
Congenital heart disease (CHD) is the most common birth defect, affecting 1 in 100 babies. Among CHDs, single ventricle (SV) physiologies, such as hypoplastic left heart syndrome and tricuspid atresia, are particularly severe conditions that require multiple palliative surgeries, including the Fontan procedure. Although the management strategies for SV patients have markedly improved, the prevalence of ventricular dysfunction continues to increase over time, especially after the Fontan procedure. At present, the final treatment for SV patients who develop heart failure is heart transplantation; however, transplantation is difficult to achieve because of severe donor shortages...
June 19, 2018: Keio Journal of Medicine
https://www.readbyqxmd.com/read/29910692/measuring-the-impact-of-the-home-health-nursing-shortage-on-family-caregivers-of-children-receiving-palliative-care
#2
Meaghann S Weaver, Brittany Wichman, Sue Bace, Denice Schroeder, Catherine Vail, Chris Wichman, Andrew Macfadyen
The national nursing shortage translates into a gap in home nursing care available to children with complex, chronic medical conditions and their family caregivers receiving palliative care consultations. A total of 38 home health nursing surveys were completed by families receiving pediatric palliative care consultation services at a freestanding children's hospital in the Midwest. The gap in the average number of nursing hours allotted versus received was 40 h/wk per family, primarily during evening hours...
June 2018: Journal of Hospice and Palliative Nursing: JHPN
https://www.readbyqxmd.com/read/29909002/specialist-palliative-care-service-for-children-with-life-threatening-conditions-a-nationwide-survey-of-availability-and-utilization
#3
Nobuyuki Yotani, Yoshiyuki Kizawa
CONTEXT: According to the International Observatory on End of Life Care, the level of pediatric palliative care in Japan is Level 2 (capacity building) and the current status of palliative care for children in Japan has not been clarified. OBJECTIVES: To clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. METHODS: A questionnaire was administered to assess the availability of specialist palliative care services among children with life-threatening conditions...
June 14, 2018: Journal of Pain and Symptom Management
https://www.readbyqxmd.com/read/29899281/integrative-approaches-in-pediatric-palliative-care
#4
Kate Shafto, Suzanne Gouda, Kris Catrine, Melanie L Brown
Pediatric palliative care is a field which focuses on caring for and treating the symptoms and distress typically associated with life-limiting illness. Integrative medicine is supported by evidence and aims to heal the whole person, including all aspects of one’s lifestyle. Therapies offered by integrative medicine often empower patients and families, allowing for a sense of control. This review addresses the merging of integrative medicine philosophy and modalities with the care given to children with life-limiting illness...
June 13, 2018: Children
https://www.readbyqxmd.com/read/29893627/practices-attitudes-and-beliefs-of-palliative-care-physicians-regarding-the-use-of-methadone-and-other-long-acting-opioids-in-children-with-advanced-cancer
#5
Kevin Madden, Minjeong Park, Diane Liu, Eduardo Bruera
BACKGROUND: Palliative care physicians often assist with pain management in children with cancer, but little is known about how they use long-acting opioids for chronic pain with these patients. OBJECTIVE: To determine the practices, attitudes, and beliefs of palliative care physicians toward the use of long-acting opioids in children with advanced cancer. DESIGN: An electronic survey was sent to all members of The American Academy of Pediatrics (AAP) Section of Hospice and Palliative Medicine (SOHPM) and those identified as physicians who provide palliative care to children on the AAP SOHPM LISTSERV® ...
June 12, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29887165/nurses-experiences-of-end-of-life-photography-in-nicu-bereavement-support
#6
Sara Martel, Lori Ives-Baine
PURPOSE: To qualitatively explore neonatal intensive care nurses' experiences with end-of-life photography as part of their bereavement support work with families. DESIGN AND METHODS: An Interpretive Phenomenological Analysis with data collected through a focus group (n = 6) and one semi-structured interview (n = 1) with neonatal nurses from a Level 3/4 NICU in a Canadian pediatric hospital. RESULTS: Participants' comfort with EOL photography developed over time through exposure to bereavement scenarios and positive experiences with families...
June 7, 2018: Journal of Pediatric Nursing
https://www.readbyqxmd.com/read/29886666/-techniques-and-experience-which-improve-the-surgical-outcomes-of-critical-and-complex-congenital-heart-disease-in-neonates
#7
Y Pan, B Jia
Objective: To discuss the experience of early surgical intervention to critical and complex congenital heart diseases (CHD) in neonates. Methods: A retrospective study of clinical records of patients with congenital heart diseases underwent surgical intervention in one single pediatric cardiac center was performed. From January 2009 to December 2017, 841 critical and complex CHD neonates were identified at Department of Cardiovascular Surgery, Children's Hospital of Fudan University, of which 6.5% were premature...
June 1, 2018: Zhonghua Wai Ke za Zhi [Chinese Journal of Surgery]
https://www.readbyqxmd.com/read/29882187/electroanatomic-mapping-guided-catheter-ablation-of-supraventricular-tachycardia-in-children-with-ebstein-s-anomaly
#8
Yakup Ergul, Serhat Koca, Celal Akdeniz, Volkan Tuzcu
In Ebstein's anomaly (EA), tachycardia substrates are complex, and accessory pathway (AP) ablations are often challenging. This study demonstrates the utility of the EnSite Velocity system (St. Jude Medical, St Paul, MN) in the catheter ablation of supraventricular tachycardia in children with EA. Twenty patients [Female/Male = 8/12, median age 11.5 years (2.6-18)] with EA who underwent catheter ablation guided by the EnSite Velocity system between December 2011 and December 2016 were retrospectively evaluated...
June 7, 2018: Pediatric Cardiology
https://www.readbyqxmd.com/read/29860857/palliative-care-services-in-pediatric-oncology
#9
Jessica L Spruit, Maryjo Prince-Paul
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date...
May 21, 2018: Annals of Palliative Medicine
https://www.readbyqxmd.com/read/29857504/pediatric-patients-receiving-specialized-palliative-home-care-according-to-german-law-a-prospective-multicenter-cohort-study
#10
Silke Nolte-Buchholtz, Boris Zernikow, Julia Wager
In Germany, every child with a life-limiting condition suffering from symptoms that cannot sufficiently be controlled is eligible by law for specialized pediatric palliative home care (SPPHC). It is the aim of this study to describe the demographic and clinical characteristics of children referred to SPPHC and to compare patients with cancer and non-cancer conditions. The prospective multicenter study includes data on 75 children (median age 7.7 years, 50.7% male). The majority had non-cancer conditions (72%)...
May 31, 2018: Children
https://www.readbyqxmd.com/read/29845954/early-neurodevelopmental-outcomes-after-corrective-cardiac-surgery-in-infants
#11
Ritchie Sharon Solomon, Tanuja Sasi, Abish Sudhakar, Raman Krishna Kumar, Balu Vaidyanathan
OBJECTIVE: To assess neurodevelopmental status in Indian infants undergoing corrective surgery for congenital heart disease (CHD) and to analyze factors associated with neurodevelopmental delay. DESIGN: Cross-sectional study. SETTING: Tertiary-care pediatric cardiology facility. PARTICIPANTS: Consecutive infants undergoing corrective surgery for CHD (January 2013 -December 2014). Palliative procedures, and patients with known genetic syndromes were excluded...
May 15, 2018: Indian Pediatrics
https://www.readbyqxmd.com/read/29845907/quality-of-living-and-dying-pediatric-palliative-care-and-end-of-life-decisions-in-the-netherlands
#12
Marije Brouwer, Els Maeckelberghe, Willemien DE Weerd, Eduard Verhagen
In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations-children between 1 and 12 years old-is undesirable. These children should have the same right to end their suffering as adults and newborn infants...
July 2018: Cambridge Quarterly of Healthcare Ethics: CQ: the International Journal of Healthcare Ethics Committees
https://www.readbyqxmd.com/read/29808788/researching-children-s-perspectives-in-pediatric-palliative-care-a-systematic-review-and-meta-summary-of-qualitative-research
#13
Luca Ghirotto, Elena Busani, Michela Salvati, Valeria Di Marco, Valeria Caldarelli, Giovanna Artioli
OBJECTIVE: Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children...
May 29, 2018: Palliative & Supportive Care
https://www.readbyqxmd.com/read/29802691/pediatric-palliative-care-in-iran-applying-regionalization-of-health-care-systems
#14
Leila Khanali Mojen, Maryam Rassouli, Peyman Eshghi, Kazem Zendedel, Ali Akbari Sari, Majideh Heravi Karimooi, Mamak Tahmasebi, Azam Shirin Abadi Farahani
Background: Establishing palliative care services is a priority in the health system of Iran. Considering the necessity of integrating these services into the health system, this study aimed to explore the stakeholders’ perceptions about the provision of a conceptual framework for palliative care services for children with cancer according to the health system in of Iran. Methods: The present qualitative study was conducted through in-depth semi-structured interviews held with 29 participants including palliative care specialists, policy-makers, health care providers, the parents of children with cancer selected through purposive sampling, between August 2016 and February 2017...
May 26, 2018: Asian Pacific Journal of Cancer Prevention: APJCP
https://www.readbyqxmd.com/read/29785662/the-timing-and-circumstances-of-the-implementation-of-pediatric-palliative-care-in-hungarian-pediatric-oncology
#15
Judit Nyirő, Szilvia Zörgő, Földesi Enikő, Katalin Hegedűs, Péter Hauser
Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carried out in person with physicians from the Hungarian Pediatric Oncology Group (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Most physicians placed the palliative care discussion at the end of curative treatment (n = 21) and preferred to conduct it in a team setting (n = 18), mainly in the presence of a psychologist...
May 21, 2018: European Journal of Pediatrics
https://www.readbyqxmd.com/read/29783228/awareness-of-pediatric-palliative-care-among-health-care-workers
#16
Oryna Z Detsyk, Zhanna M Zolotarova, Iryna V Stovban, Roman M Melnyk
OBJECTIVE: Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children. PATIENTS AND METHODS: Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children...
2018: Wiadomości Lekarskie: Organ Polskiego Towarzystwa Lekarskiego
https://www.readbyqxmd.com/read/29782212/national-impact-of-the-epec-pediatrics-enhanced-train-the-trainer-model-for-delivering-education-on-pediatric-palliative-care
#17
Kimberley Widger, Joanne Wolfe, Stefan Friedrichsdorf, Jason D Pole, Sarah Brennenstuhl, Stephen Liben, Mark Greenberg, Eric Bouffet, Harold Siden, Amna Husain, James A Whitlock, Myra Leyden, Adam Rapoport
BACKGROUND: Lack of pediatric palliative care (PPC) training impedes successful integration of PPC principles into pediatric oncology. OBJECTIVES: We examined the impact of an enhanced implementation of the Education in Palliative and End-of-Life Care for Pediatrics (EPEC® -Pediatrics) curriculum on the following: (1) knowledge dissemination; (2) health professionals' knowledge; (3) practice change; and (4) quality of PPC. DESIGN: An integrated knowledge translation approach was used with pre-/posttest evaluation of care quality...
May 21, 2018: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/29779802/feasibility-of-initiating-early-enteral-nutrition-after-congenital-heart-surgery-in-neonates-and-infants
#18
Rajat Kalra, Rohit Vohra, Malti Negi, Reena Joshi, Neeraj Aggarwal, Mridul Aggarwal, Raja Joshi
OBJECTIVE: To assess the feasibility of initiating enteral nutrition support with first 24 h of congenital heart repairs in neonates and Infants and its impact on outcomes following surgery. DESIGN: It is a prospective randomized control single blind study. SETTING: It is a single centre prospective study carried out in a tertiary care centre at Pediatric cardiac intensive care unit. PATIENTS: All patients with the cyanotic congenital heart disease with increase pulmonary blood flow, weighing less than 5 kg and undergoing congenital heart repair during the study period were included in the study...
June 2018: Clinical Nutrition ESPEN
https://www.readbyqxmd.com/read/29770997/gemcitabine-nab-paclitaxel-for-pediatric-relapsed-refractory-sarcomas
#19
Jonathan L Metts, Adina L Alazraki, Dana Clark, Ernest K Amankwah, Karen J Wasilewski-Masker, Bradley A George, Thomas A Olson, Thomas Cash
BACKGROUND: Pediatric patients with relapsed/refractory sarcomas have poor outcomes and need novel therapies that provide disease control while maintaining an acceptable quality of life. The activity and toxicity of gemcitabine and nab-paclitaxel in combination has not been reported in pediatrics. PROCEDURE: We reviewed the records of fifteen relapsed/refractory patients and one treatment-naïve patient who received gemcitabine/nab-paclitaxel at our institution...
May 17, 2018: Pediatric Blood & Cancer
https://www.readbyqxmd.com/read/29770299/regenerative-medicine-therapy-for-single-ventricle-congenital-heart-disease
#20
REVIEW
Chetan Ambastha, Gregory J Bittle, David Morales, Nathaniel Parchment, Progyaparamita Saha, Rachana Mishra, Sudhish Sharma, Alexander Vasilenko, Muthukumar Gunasekaran, Manal T Al-Suqi, Deqiang Li, Peixin Yang, Sunjay Kaushal
One of the most complex forms of congenital heart disease (CHD) involving single ventricle physiology is hypoplastic left heart syndrome (HLHS), characterized by underdevelopment of the left ventricle (LV), mitral and aortic valves, and narrowing of the ascending aorta. The underdeveloped LV is incapable of providing long-term systemic flow, and if left untreated, the condition is fatal. Current treatment for this condition consists of three consecutive staged palliative operations: the first is conducted within the first few weeks of birth, the second between 4 to 6 months, and the third and final surgery within the first 4 years...
April 2018: Translational Pediatrics
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