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Quality of life pediatric heart

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https://www.readbyqxmd.com/read/28410774/maintaining-the-gift-of-life-achieving-adherence-in-adolescent-heart-transplant-recipients
#1
Rachael Steuer, Sabrina Opiola McCauley
Since the beginning of United Network of Organ Sharing data collection in 1987, a total of 8,333 pediatric patients have received a heart transplant in the United States. Because these patients now have longer graft success with improved care and immunosuppression, many of them are entering adolescence and young adulthood. Primary care pediatric nurse practitioners need to be alert to the prevalence of noncompliance with treatment in heart transplant patients, which continues to be highest in adolescence. Low compliance in adolescence increases morbidity, contributes to decreasing quality of life, and is the leading reason for graft failure and mortality in this age group...
April 12, 2017: Journal of Pediatric Health Care
https://www.readbyqxmd.com/read/28363739/functional-status-of-united-states-children-supported-with-a-left-ventricular-assist-device-at-heart-transplantation
#2
Anica Bulic, Katsuhide Maeda, Yulin Zhang, Sharon Chen, Doff B McElhinney, John C Dykes, Amanda M Hollander, Seth A Hollander, Jenna Murray, Olaf Reinhartz, Mary Alice Gowan, David N Rosenthal, Christopher S Almond
BACKGROUND: As survival with pediatric left ventricular assist devices (LVADs) has improved, decisions regarding the optimal support strategy may depend more on quality of life and functional status (FS) rather than mortality alone. Limited data are available regarding the FS of children supported with LVADs. We sought to compare the FS of children supported with LVADs vs vasoactive infusions to inform decision making around support strategies. METHODS: Organ Procurement and Transplant Network data were used to identify all United States children aged between 1 and 21 years at heart transplant (HT) between 2006 and 2015 for dilated cardiomyopathy and supported with an LVAD or vasoactive infusions alone at HT...
March 2, 2017: Journal of Heart and Lung Transplantation
https://www.readbyqxmd.com/read/28290258/parent-reports-of-health-related-quality-of-life-and-heart-failure-severity-score-independently-predict-outcome-in-children-with-dilated-cardiomyopathy
#3
Susanna L den Boer, Sara J Baart, Marijke H van der Meulen, Gabriëlle G van Iperen, Ad P Backx, Arend D Ten Harkel, Lukas A Rammeloo, Gideon J du Marchie Sarvaas, Ronald B Tanke, Willem A Helbing, Elisabeth M Utens, Michiel Dalinghaus
BACKGROUND: Dilated cardiomyopathy in children causes heart failure and has a poor prognosis. Health-related quality of life in this patient group is unknown. Moreover, results may provide detailed information of parents' sense of their child's functioning. We hypothesised that health-related quality of life, as rated by parents, and the paediatric heart failure score, as assessed by physicians, have both predictive value on outcome. Methods and results In this prospective study, health-related quality of life was assessed by parent reports: the Infant Toddler Quality of Life questionnaire (0-4 years) or Child Health Questionnaire-Parent Form 50 (4-18 years) at 3-6-month intervals...
March 14, 2017: Cardiology in the Young
https://www.readbyqxmd.com/read/28223051/functional-status-and-quality-of-life-in-survivors-of-extracorporeal-membrane-oxygenation-after-the-norwood-operation
#4
Joshua M Friedland-Little, Karen Uzark, Sunkyung Yu, Ray Lowery, Ranjit Aiyagari, Jennifer C Hirsch-Romano
BACKGROUND: Infants who require extracorporeal membrane oxygenation (ECMO) support after a Norwood operation are at increased risk for early and late death compared with patients who do not require ECMO post-Norwood. Little is known about the effect that ECMO post-Norwood has on functional status and quality of life among long-term survivors. METHODS: We prospectively evaluated functional status and health-related quality of life in 12 surviving patients (cases) and 19 corresponding patients (controls) from a previous retrospective case-control assessment of long-term survival in patients requiring ECMO post-Norwood...
February 18, 2017: Annals of Thoracic Surgery
https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#5
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/28145649/clinical-characteristics-of-transplant-associated-encephalopathy-in-children
#6
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/28126509/-cardiac-rehabilitation-for-children-and-adults-with-congenital-heart-disease
#7
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
#8
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/27965948/do-self-and-proxy-reports-of-cognitive-problems-reflect-intellectual-functioning-in-children-and-adolescents-with-congenital-heart-defects
#9
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/27919346/disease-control-via-intensified-lipoprotein-apheresis-in-three-siblings-with-familial-hypercholesterolemia
#10
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/27849657/long-term-follow-up-on-health-related-quality-of-life-after-mechanical-circulatory-support-in-children
#11
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/27843325/the-role-of-the-multidisciplinary-health-care-team-in-the-management-of-patients-with-marfan-syndrome
#12
REVIEW
Yskert von Kodolitsch, Meike Rybczynski, Marina Vogler, Thomas S Mir, Helke Schüler, Kerstin Kutsche, Georg Rosenberger, Christian Detter, Alexander M Bernhardt, Axel Larena-Avellaneda, Tilo Kölbel, E Sebastian Debus, Malte Schroeder, Stephan J Linke, Bettina Fuisting, Barbara Napp, Anna Lena Kammal, Klaus Püschel, Peter Bannas, Boris A Hoffmann, Nele Gessler, Eva Vahle-Hinz, Bärbel Kahl-Nieke, Götz Thomalla, Christina Weiler-Normann, Gunda Ohm, Stefan Neumann, Dieter Benninghoven, Stefan Blankenberg, Reed E Pyeritz
Marfan syndrome (MFS) is a rare, severe, chronic, life-threatening disease with multiorgan involvement that requires optimal multidisciplinary care to normalize both prognosis and quality of life. In this article, each key team member of all the medical disciplines of a multidisciplinary health care team at the Hamburg Marfan center gives a personal account of his or her contribution in the management of patients with MFS. The authors show how, with the support of health care managers, key team members organize themselves in an organizational structure to create a common meaning, to maximize therapeutic success for patients with MFS...
2016: Journal of Multidisciplinary Healthcare
https://www.readbyqxmd.com/read/27806794/-follow-up-of-survived-children-supported-by-extracorporeal-membrane-oxygenation
#13
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
#14
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/27792792/economic-analysis-of-children-s-surgical-care-in-low-and-middle-income-countries-a-systematic-review-and-analysis
#15
Anthony T Saxton, Dan Poenaru, Doruk Ozgediz, Emmanuel A Ameh, Diana Farmer, Emily R Smith, Henry E Rice
BACKGROUND: Understanding the economic value of health interventions is essential for policy makers to make informed resource allocation decisions. The objective of this systematic review was to summarize available information on the economic impact of children's surgical care in low- and middle-income countries (LMICs). METHODS: We searched MEDLINE (Pubmed), Embase, and Web of Science for relevant articles published between Jan. 1996 and Jan. 2015. We summarized reported cost information for individual interventions by country, including all costs, disability weights, health outcome measurements (most commonly disability-adjusted life years [DALYs] averted) and cost-effectiveness ratios (CERs)...
2016: PloS One
https://www.readbyqxmd.com/read/27685861/perceptions-of-disease-related-stress-a-key-to-better-understanding-patient-reported-outcomes-among-survivors-of-congenital-heart-disease
#16
Jamie L Jackson, Gina M Gerardo, Curt J Daniels, Kathryn Vannatta
BACKGROUND: Disease-related stressors for survivors of congenital heart disease (CHD) have been qualitatively described but not quantified nor examined in relationship to important patient-reported outcomes (PROs). OBJECTIVE: The aims of this study are to (1) identify the types and degree of disease-related stress experienced by CHD survivors based on age, functional status, and sex, (2) examine differences in stress and PROs by age, functional status, and sex, and (3) determine the unique contribution of perceived stress to variability in PROs...
September 28, 2016: Journal of Cardiovascular Nursing
https://www.readbyqxmd.com/read/27645708/psychosocial-health-and-quality-of-life-among-children-with-cardiac-diagnoses-agreement-and-discrepancies-between-parent-and-child-reports
#17
Bhavika J Patel, Lillian Lai, Gary Goldfield, Renee Sananes, Patricia E Longmuir
Psychosocial health issues are common among children with cardiac diagnoses. Understanding parent and child perceptions is important because parents are the primary health information source. Significant discrepancies have been documented between parent/child quality-of-life data but have not been examined among psychosocial diagnostic instruments. This study examined agreement and discrepancies between parent and child reports of psychosocial health and quality of life in the paediatric cardiology population...
September 20, 2016: Cardiology in the Young
https://www.readbyqxmd.com/read/27555533/allogeneic-hematopoietic-stem-cell-transplantation-in-thirty-four-pediatric-cases-of-mucopolysaccharidosis-a-ten-year-report-from-the-china-children-transplant-group
#18
Jianmin Wang, Zuo Luan, Hua Jiang, Jianpei Fang, Maoquan Qin, Vincent Lee, Jing Chen
We investigated the efficacy of allogeneic hematopoietic stem cell transplantation (alloHSCT) in pediatric patients with mucopolysaccharidosis (MPS). A retrospective analysis of transplantation data from 34 cases of MPS from the China Children Transplant Group, treated between December 2004 and September 2015, was conducted. Among the 34 cases, 12 cases were type I, 12 were type II, 4 were type IV, 4 were type VI, and 2 were of an unknown type. The median age at transplantation was 3.75 years (range, 1 to 7 years); the median follow-up time was 14 months (range, 2 to 119 months)...
November 2016: Biology of Blood and Marrow Transplantation
https://www.readbyqxmd.com/read/27524661/music-interventions-for-improving-psychological-and-physical-outcomes-in-cancer-patients
#19
REVIEW
Joke Bradt, Cheryl Dileo, Lucanne Magill, Aaron Teague
BACKGROUND: Having cancer may result in extensive emotional, physical and social suffering. Music interventions have been used to alleviate symptoms and treatment side effects in cancer patients. OBJECTIVES: To assess and compare the effects of music therapy and music medicine interventions for psychological and physical outcomes in people with cancer. SEARCH METHODS: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) (2016, Issue 1), MEDLINE, Embase, CINAHL, PsycINFO, LILACS, Science Citation Index, CancerLit, CAIRSS, Proquest Digital Dissertations, ClinicalTrials...
August 15, 2016: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/27454332/automated-non-eeg-based-seizure-detection-do-users-have-a-say
#20
Anouk Van de Vel, Katrien Smets, Kristien Wouters, Berten Ceulemans
PURPOSE: Quality of life of patients with epilepsy depends largely upon unpredictability of seizure occurrence and would improve by predicting seizures or at least by detecting seizures (after their clinical onset) and react timely. Detection systems are available and researched, but little is known about the actual need and user preferences. The first indicates the market potential; the second allows us to incorporate user requirements into the engineering process. METHODS: We questioned 20 pediatric and young adult patients, 114 caregivers, and 21 involved medical doctors and described, analyzed, and compared their experiences with systems for seizure detection, their opinions on usefulness and purpose of seizure detection, and their requirements for such a device...
September 2016: Epilepsy & Behavior: E&B
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