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https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#1
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/28160116/family-caregiving-for-persons-with-heart-failure-at-the-intersection-of-heart-failure-and-palliative-care-a-state-of-the-science-review
#2
J Nicholas Dionne-Odom, Stephanie A Hooker, David Bekelman, Deborah Ejem, Gwen McGhan, Lisa Kitko, Anna Strömberg, Rachel Wells, Meka Astin, Zehra Gok Metin, Gisella Mancarella, Salpy V Pamboukian, Lorraine Evangelista, Harleah G Buck, Marie A Bakitas
Many of the 23 million individuals with heart failure (HF) worldwide receive daily, unpaid support from a family member or friend. Although HF and palliative care practice guidelines stipulate that support be provided to family caregivers, the evidence base to guide care for this population has not been comprehensively assessed. In order to appraise the state-of-the-science of HF family caregiving and recommend areas for future research, the aims of this review were to summarize (1) how caregivers influence patients, (2) the consequences of HF for caregivers, and (3) interventions directed at HF caregivers...
February 4, 2017: Heart Failure Reviews
https://www.readbyqxmd.com/read/28148316/design-and-initial-results-of-a-programme-for-routine-standardised-longitudinal-follow-up-after-congenital-heart-surgery
#3
Sara K Pasquali, Chitra Ravishankar, Jennifer C Romano, Kristin Kane, Suzanne Viers, Andrea Kennedy, Nancy Burnham, Ray Lowery, Karen Uzark, Lauren Retzloff, Jonathon J Rome, Joseph W Rossano, John R Charpie, Thomas L Spray, Michael G Gaies, Richard G Ohye, J William Gaynor
BACKGROUND: With improvements in early survival following congenital heart surgery, it has become increasingly important to understand longer-term outcomes; however, routine collection of these data is challenging and remains very limited. We describe the development and initial results of a collaborative programme incorporating standardised longitudinal follow-up into usual care at the Children's Hospital of Philadelphia (CHOP) and University of Michigan (UM). METHODS: We included children undergoing benchmark operations of the Society of Thoracic Surgeons...
December 2016: Cardiology in the Young
https://www.readbyqxmd.com/read/28145649/clinical-characteristics-of-transplant-associated-encephalopathy-in-children
#4
Yun Jeong Lee, Mi Sun Yum, Eun Hee Kim, Min Jee Kim, Kyung Mo Kim, Ho Joon Im, Young Hwue Kim, Young Seo Park, Tae Sung Ko
We aimed to analyze characteristics of encephalopathy after both hematopoietic stem cell and solid organ pediatric transplantation. We retrospectively reviewed medical records of 662 pediatric transplant recipients (201 with liver transplantation [LT], 55 with heart transplantation [HT], and 67 with kidney transplantation [KT], 339 with allogeneic hematopoietic stem cell transplantation [HSCT]) who received their graft organs at Asan Medical Center between January 2000 and July 2014. Of the 662 patients, 50 (7...
March 2017: Journal of Korean Medical Science
https://www.readbyqxmd.com/read/28135117/an-11-year-study-of-home-hospice-service-trends-in-singapore-from-2000-to-2010
#5
Benedict John Ho, Ramaswamy Akhileswaran, Grace Su Yin Pang, Gerald Choon Huat Koh
BACKGROUND: Hospice care is most appropriate when a patient no longer benefits from curative treatment and has limited life expectancy. These patients may suffer from any type of life-limiting illness, including end-stage cancer, end-stage heart disease, end-stage renal failure, AIDS, and Alzheimer's disease, among other illnesses. Patients are managed on their pain and symptoms and home hospice care manages these patients in the comfort of their own home, enabling patients to spend their last days with dignity and have a good quality of life...
January 30, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28126509/-cardiac-rehabilitation-for-children-and-adults-with-congenital-heart-disease
#6
Pascal Amedro, Arthur Gavotto, Charlène Bredy, Sophie Guillaumont
Advances in heart surgery over the past 30 years have significantly improved the prognosis of congenital heart diseases (CHD). Therefore, the epidemiology of CHD has changed dramatically with a shift of mortality from pediatrics to adulthood and an increased prevalence of complex CHD. Today, caregivers and patients focus their interests to new perspectives: improving the quality of life, practicing sports, improving psychosocial care. Cardiac rehabilitation is completely integrated in these new therapeutic strategies...
January 23, 2017: La Presse Médicale
https://www.readbyqxmd.com/read/28115007/a-home-based-exercise-program-for-children-with-congenital-heart-disease-following-interventional-cardiac-catheterization-study-protocol-for-a-randomized-controlled-trial
#7
Qing Du, Yasser Salem, Hao Howe Liu, Xuan Zhou, Sun Chen, Nan Chen, Xiaoyan Yang, Juping Liang, Kun Sun
BACKGROUND: Cardiac catheterization has opened an innovative treatment field for cardiac disease; this treatment is becoming the most popular approach for pediatric congenital heart disease (CHD) and has led to a significant growth in the number of children with cardiac catheterization. Unfortunately, based on evidence, it has been demonstrated that the majority of children with CHD are at an increased risk of "non-cardiac" problems. Effective exercise therapy could improve their functional status significantly...
January 23, 2017: Trials
https://www.readbyqxmd.com/read/28065734/laparoscopic-roux-en-y-gastric-bypass-in-adolescents-with-severe-obesity-amos-a-prospective-5-year-swedish-nationwide-study
#8
Torsten Olbers, Andrew J Beamish, Eva Gronowitz, Carl-Erik Flodmark, Jovanna Dahlgren, Gustaf Bruze, Kerstin Ekbom, Peter Friberg, Gunnar Göthberg, Kajsa Järvholm, Jan Karlsson, Staffan Mårild, Martin Neovius, Markku Peltonen, Claude Marcus
BACKGROUND: Severe obesity in adolescence is associated with reduced life expectancy and impaired quality of life. Long-term benefits of conservative treatments in adolescents are known to be modest, whereas short-term outcomes of adolescent bariatric surgery are promising. We aimed to compare 5-year outcomes of adolescent surgical patients after Roux-en-Y gastric bypass with those of conservatively treated adolescents and of adults undergoing Roux-en-Y gastric bypass, in the Adolescent Morbid Obesity Surgery (AMOS) study...
January 5, 2017: Lancet Diabetes & Endocrinology
https://www.readbyqxmd.com/read/28018896/factors-influencing-neurodevelopment-after-cardiac-surgery-during-infancy
#9
REVIEW
Hedwig Hubertine Hövels-Gürich
Short- and long-term neurodevelopmental (ND) disabilities with negative impact on psychosocial and academic performance, quality of life, and independence in adulthood are known to be the most common sequelae for surviving children after surgery for congenital heart disease (CHD). This article reviews influences and risk factors for ND impairment. For a long time, the search for independent risk factors was focused on the perioperative period and modalities of cardiopulmonary bypass (CPB). CPB operations to ensure intraoperative vital organ perfusion and oxygen supply with or without circulatory arrest or regional cerebral perfusion bear specific risks...
2016: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/28000391/psychosocial-impact-on-families-with-an-infant-with-a-hypoplastic-left-heart-syndrome-during-and-after-the-interstage-monitoring-period-a-prospective-mixed-method-study
#10
Gaby Stoffel, Rebecca Spirig, Brian Stiasny, Vera Bernet, Hitendu Dave, Walter Knirsch
AIMS AND OBJECTIVES: To investigate parents' experiences, coping ability and quality of life while monitoring their sick child with hypoplastic left heart syndrome at home. BACKGROUND: Interstage home monitoring for children with hypoplastic left heart syndrome reduces interstage mortality between Norwood stages I and II. Little is known about the psychosocial impact of interstage home monitoring. DESIGN: Prospective mixed-method study. METHOD: This study assessed the psychosocial impact on parents during IHM...
December 21, 2016: Journal of Clinical Nursing
https://www.readbyqxmd.com/read/27989374/functional-quality-of-life-and-neurodevelopmental-outcomes-after-congenital-cardiac-surgery
#11
REVIEW
Megan L Ringle, Gil Wernovsky
Throughout the past few decades, advances in cardiology, neonatal intensive care, and surgical techniques have resulted in a growing cohort of thriving school-aged children with previously lethal complex congenital heart diseases. While survival has increased, there remains significant morbidity following repair including neurodevelopmental sequelae. Compared to children with a structurally normal heart, these infants and children have a higher frequency of abnormalities in tone, feeding, and delayed developmental milestones, as well as challenges with speech and learning disabilities, while a higher proportion of adolescents suffer from problems with processing speed, executive function, and a unique set of medical hardships related to exercise intolerance and obesity, medication burden, and mental health comorbidities...
December 2016: Seminars in Perinatology
https://www.readbyqxmd.com/read/27965948/do-self-and-proxy-reports-of-cognitive-problems-reflect-intellectual-functioning-in-children-and-adolescents-with-congenital-heart-defects
#12
Sandra Buratti, Carmen Ryberg, Malin Broberg, Jan Sunnegårdh
AIM: Children with congenital heart defects (CHD) who suffer from cognitive impairments and school difficulties need to be identified as early as possible in order to set appropriate interventions in place that may enhance the school situation and quality of life for these children. Identifying children and adolescents at risk for cognitive difficulties requires specific screening tools. This study assessed such a tool - Pediatric Quality of Life Inventory Cardiac Module subscale: Cognitive Problems - to investigate whether proxy reported and self-reported cognitive problems were associated with measured intellectual functioning in children and adolescents with CHD treated with surgery or by catheter interventions...
2016: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/27957813/neurocognitive-functioning-in-adults-with-congenital-heart-disease
#13
Dawn Ilardi, Kim E Ono, Rebecca McCartney, Wendy Book, Anthony Y Stringer
OBJECTIVE: Adults with congenital heart disease (CHD) are at increased risk of psychological disorders and cognitive deficiencies due to structural/acquired neurological abnormalities and neurodevelopmental disorders as children. However, limited information is known about the neuropsychological functioning of adults with CHD. This study screened neuropsychological abilities and explored group differences related to cardiac disease severity and neurological risk factors in adults with CHD...
December 13, 2016: Congenital Heart Disease
https://www.readbyqxmd.com/read/27936920/management-of-children-with-congenital-heart-defect-state-of-the-art-and-future-prospects
#14
Marie-Christine Seghaye
The treatment of children with congenital heart defects has evolved in the last 60 years from conservative care to a highly specialized management where advances in imaging, surgical, interventional and support techniques meet together to ensure satisfactory development and good quality of life to the child and to the upcoming grown up. Management of congenital heart defects best begins before birth with the aim, whenever possible, to maintain or establish biventricular physiology or, if this is excluded, to optimize the conditions for univentricular physiology...
January 2017: Future Cardiology
https://www.readbyqxmd.com/read/27919346/disease-control-via-intensified-lipoprotein-apheresis-in-three-siblings-with-familial-hypercholesterolemia
#15
Christina Taylan, Andrea Schlune, Thomas Meissner, Karolis Ažukaitis, Floris E A Udink Ten Cate, Lutz T Weber
BACKGROUND: Familial hypercholesterolemia (FH), the prevalent monogenic form of hypercholesterolemia, carries the risk of premature coronary heart disease. Lipoprotein-apheresis is established in children with severe dyslipidemia. We present 3 siblings with a negative/negative residual low-density lipoprotein (LDL) receptor mutation (p.Trp577Arg), unresponsive to drug treatment. OBJECTIVE: Intensified lipoprotein-apheresis is well tolerated and results in permanently low lipid values without harming the health-related quality of life in children...
November 2016: Journal of Clinical Lipidology
https://www.readbyqxmd.com/read/27900177/high-intensity-interval-training-to-improve-fitness-in-children-with-cerebral-palsy
#16
Reidun Lauglo, Torstein Vik, Torarin Lamvik, Dorthe Stensvold, Ane-Kristine Finbråten, Trine Moholdt
AIM: To evaluate effects of high-intensity interval training (HIT) on aerobic exercise capacity, quality of life, and body composition in children with cerebral palsy (CP). METHODS: This was a baseline control trial. Children with CP, Gross Motor Function Classification System (GMFCS) levels I-IV, and age 10-17 years were included. The primary outcome, peak, and submaximum oxygen uptake (VO2peak, VO2submax) were measured at enrolment to the study (T0), after a pretraining period (T1), and after HIT (T2)...
2016: BMJ Open Sport & Exercise Medicine
https://www.readbyqxmd.com/read/27849657/long-term-follow-up-on-health-related-quality-of-life-after-mechanical-circulatory-support-in-children
#17
Thilo P K Fleck, Georg Dangel, Felix Bächle, Christoph Benk, Jochen Grohmann, Johannes Kroll, Matthias Siepe, Rene Höhn, Janbernd Kirschner, Friedhelm Beyersdorf, Brigitte Stiller
OBJECTIVE: The objective of this study was to evaluate health-related quality of life in long-term survivors of mechanical circulatory support after acute cardiopulmonary failure. DESIGN: Prospective follow-up study. SETTING: Single-institutional in a center for congenital heart disease and pediatric cardiology. PATIENTS: Fifty patients who underwent 58 mechanical circulatory support therapies in our institution from 2001 to 2012...
February 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/27806794/-follow-up-of-survived-children-supported-by-extracorporeal-membrane-oxygenation
#18
Y Cheng, Z J Lu, X G Yan, J He, G F Yan, X D Cai, W J Shen, A L Jin, G P Lu
Objective: To summarize the follow-up of children treated with venoarterial extracorporeal membrane oxygenation (ECMO) by incision of internal carotid artery-vein. Method: This was a retrospective study, 10 children in whom the conventional therapy failed, but survived after treatment with ECMO technique through right internal jugular artery-venous incision and ligation after ECMO in pediatric intensive care unit (PICU) of Fudan University were followed up from December 2011 to December 2015. Primary disease situation, neurological development, growth and development, quality of life and personality development were included...
November 2, 2016: Zhonghua Er Ke za Zhi. Chinese Journal of Pediatrics
https://www.readbyqxmd.com/read/27806793/-extracorporeal-membrane-oxygenation-for-rescuing-12-children-with-acute-fulminant-myocarditis
#19
L F Ye, Y Fan, C M Zhang, Q Shu, L Z Du, R Lin
Objective: To summarize clinical experience of using extracorporeal membrane oxygenation (ECMO) in rescuing children with acute fulminant myocarditis (AFM). Method: Data of 12 children with acute fulminate myocarditis (6 boys and 6 girls, median age 8.3 (0.6, 13.0) years, median weight 33.1 (6, 61) kg) who were rescued with ECMO in Children's Hospital, Zhejiang University from September 2009 to August 2015 were analyzed retrospectively. The analysis focused on the intervene timing of ECMO for the cardiogenic shock and hypoperfusion caused by heart failure and(or) lethal arrhythmia and the essentials of ECMO cardiopulmonary resuscitation(ECPR) for cardiac arrest in pediatric AFM were summarized...
November 2, 2016: Zhonghua Er Ke za Zhi. Chinese Journal of Pediatrics
https://www.readbyqxmd.com/read/27800664/clinical-pharmacist-provided-services-in-iron-overloaded-beta-thalassemia-major-children-a-new-insight-to-patient-care
#20
Salma M Bahnasawy, Lamia M El Wakeel, Nagham El Beblawy, Manal El-Hamamsy
Iron overloaded β-thalassemia major (BTM) children have high risk of delayed sexual/physical maturation, liver/heart diseases and reduced life expectancy. The lifelong need to use iron chelators along with their unpleasant administration, side effects and lack of awareness regarding iron overload risks, all hamper BTM patient compliance to iron chelators. This study evaluated the impact of clinical pharmacist-provided services on the outcome of iron overloaded BTM children. Forty-eight BTM children were randomly assigned to either control group, who received standard medical care or intervention group, who received standard medical care plus clinical pharmacist-provided services...
October 31, 2016: Basic & Clinical Pharmacology & Toxicology
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