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Quality of life pediatric heart

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
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
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
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...
2016: Cochrane Database of Systematic Reviews
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
Amy M O'Connor, Jo Wray, Ryan S Tomlinson, Amy Cassedy, Jeffrey P Jacobs, Kathy J Jenkins, Kate L Brown, Rodney C G Franklin, Lynn Mahony, Kathleen Mussatto, Jane W Newburger, Gil Wernovsky, Richard F Ittenbach, Dennis Drotar, Bradley S Marino
BACKGROUND: Surgical complexity and related morbidities may affect long-term patient quality of life (QOL). Aristotle Basic Complexity (ABC) score and Risk Adjustment in Congenital Heart Surgery (RACHS-1) category stratify the complexity of pediatric cardiac operations. The purpose of this study was to examine the relationship between surgical complexity and QOL and to investigate other demographic and clinical variables that might explain variation in QOL in pediatric cardiac surgical survivors...
2016: Journal of the American Heart Association
Prasad Devarajan, John Lynn Jefferies
The incidence of chronic kidney disease (CKD) in children and adults is increasing. Cardiologists have become indispensable members of the care provider team for children with CKD. This is partly due to the high incidence of CKD in children and adults with congenital heart disease, with current estimates of 30-50%. In addition, the high incidence of acute kidney injury (AKI) due to cardiac dysfunction or following pediatric cardiac surgery that may progress to CKD is also well documented. It is now apparent that AKI and CKD are uniquely intertwined as interconnected syndromes...
June 2016: Progress in Pediatric Cardiology
Koen Luyckx, Jessica Rassart, Eva Goossens, Silke Apers, Leen Oris, Philip Moons
Patients with CHD are vulnerable to psychiatric disorders. The present study compared baseline depressive symptoms between adolescents with CHD and community adolescents, and also assessed the development and persistence of depressive symptoms in patients. We examined the implications of persistent depressive symptoms towards quality of life and patient-reported health. In total, 296 adolescents with CHD participated in a four-wave longitudinal study, with 9-month intervals, and completed measures of depressive symptoms - Center for Epidemiologic Studies Depression Scale (CES-D) - at time points one to four and of quality of life - linear analogue scale (LAS) - and patient-reported health - LAS and Pediatric Quality of Life Inventory - at T (time) 4...
August 2016: Cardiology in the Young
Elizabeth C Caris, Nicole Dempster, Gil Wernovsky, Catherine Butz, Trent Neely, Robin Allen, Jamie Stewart, Holly Miller-Tate, Rachel Fonseca, Karen Texter, Lisa Nicholson, Clifford L Cua
OBJECTIVES: Caring for children with congenital heart disease places significant stress on caregivers. Minimal data exist evaluating stress levels in caregivers of children with hypoplastic left heart syndrome (HLHS). The goal of this study was to obtain baseline stress scores for caregivers of children with HLHS and determine if associations exist between scores and specific caregiver factors. STUDY DESIGN: A cross-sectional study using a web-based survey targeted towards caregivers of children with HLHS was performed...
June 20, 2016: Congenital Heart Disease
(no author information available yet)
No abstract text is available yet for this article.
June 2016: Annals of Intensive Care
Hyemi Katherine Chang, John Fernandes, Vidhya Nair
INTRODUCTION: Kawasaki disease (KD) is a major cause of acquired heart disease in children, and there is limited information on postmortem findings in the pediatric population in Canada. CASES: For a 15-year time span (January 2000-March 2015), we had 2 cases of KD presented to the Department of Forensic Pathology at Hamilton General Hospital. DISCUSSION: There were common cardiac findings including presence of giant coronary artery aneurysms and microscopic changes occurring within the coronary arteries and the myocardium...
September 2016: American Journal of Forensic Medicine and Pathology
Tyler Bradley-Hewitt, Andrea Dantin, Michelle Ploutz, Twalib Aliku, Peter Lwabi, Craig Sable, Andrea Beaton
OBJECTIVE: To assess the impact of rheumatic heart disease (RHD) on child-reported health-related quality of life (HRQOL) in the context of a Ugandan school-based echocardiographic screening program. Echocardiography-based screening has emerged as a tool for the early detection of RHD, but little is known about its impact on those screened. STUDY DESIGN: Participants included 358 children from Gulu and 28 children from Kampala Uganda. The Pediatric Quality of Life Inventory Version 4...
August 2016: Journal of Pediatrics
Siva P Namachivayam, Yves d'Udekem, Johnny Millar, Michael M Cheung, Warwick Butt
BACKGROUND: Children who require prolonged intensive care after cardiac surgery are at risk of high mortality. The long-term survival and functional outcome of these children have not been studied in detail. METHODS: Children who stayed in intensive care for >28 days after cardiac surgery from 1997 to 2012 were studied in a single institution. A total of 116 patients were identified; 107 (92%) were <1 year of age and 63 (54%) had univentricular physiology...
October 2016: Journal of Thoracic and Cardiovascular Surgery
Josue Chery, Joshua Wong, Shan Huang, Shuyun Wang, Ming-Sing Si
Hypoplastic left heart syndrome (HLHS), the most severe and common form of single ventricle congenital heart lesions, is characterized by hypoplasia of the mitral valve, left ventricle (LV), and all LV outflow structures. While advances in surgical technique and medical management have allowed survival into adulthood, HLHS patients have severe morbidities, decreased quality of life, and a shortened lifespan. The single right ventricle (RV) is especially prone to early failure because of its vulnerability to chronic pressure overload, a mode of failure distinct from ischemic cardiomyopathy encountered in acquired heart disease...
June 28, 2016: Tissue Engineering. Part B, Reviews
Te-Yung Fang, Eric Rafai, Pa-Chun Wang, Chiy-Huey Bai, Peng-Long Jiang, Shu-Nuan Huang, You-Ju Chen, Yi-Ting Chao, Chen-Hsu Wang, Chia-Hsiu Chang
OBJECTIVE: Otitis media (OM), as a common infectious disease, is a major cause of hearing impairment among the general population. OM remains a major public health threat in the Pacific islands, but the risks of OM have not been thoroughly explored in this region. The objective of this study is to investigate the prevalence, clinical features, and quality-of-life impacts of OM in Fiji. METHODS: In the medical service trip entitled "Healing and Hope - Taiwan Cathay Heart and Hearing Medical Mission to Fiji" (TCHHMMF), we conducted a cross-sectional OM survey study in Suva and Sigatoka areas (Korolevu, Cuvu, and Lomawai) in the summer of 2015...
June 2016: International Journal of Pediatric Otorhinolaryngology
David S Cooper, Rajit K Basu, Jack F Price, Stuart L Goldstein, Catherine D Krawczeski
The field of cardiac intensive care continues to advance in tandem with congenital heart surgery. The focus of intensive care unit care has now shifted to that of morbidity reduction and eventual elimination. Acute kidney injury (AKI) after cardiac surgery is associated with adverse outcomes, including prolonged intensive care and hospital stays, diminished quality of life, and increased long-term mortality. Acute kidney injury occurs frequently, complicating the care of both postoperative patients and those with heart failure...
March 2016: World Journal for Pediatric & Congenital Heart Surgery
Christina Ronai, Peter Lang
BACKGROUND: In 2003, work-hour regulations were implemented by the Accreditation Council for Graduate Medical Education. Much has been published regarding resident rest and quality of life as well as patient safety. There has been no examination on the effect of work-hour restrictions on academic productivity of fellows in training. Paediatric subspecialty fellows have a scholarly requirement mandated by the American Board of Pediatrics. We have examined the impact of work-hour restrictions on the scholarly productivity of paediatric cardiology fellows during their fellowship...
March 9, 2016: Cardiology in the Young
David Faraoni, David Zurakowski, Daniel Vo, Susan M Goobie, Koichi Yuki, Morgan L Brown, James A DiNardo
BACKGROUND: Significant advances have been made in the diagnosis and treatment of children with congenital heart disease (CHD), allowing for longer life expectancies and an increasing number who will require noncardiac surgery. OBJECTIVES: This study sought to compare the incidence of mortality and major adverse post-operative outcomes following noncardiac surgery in children with and without CHD. METHODS: Data from the 2012 pediatric database of the American College of Surgeons National Surgical Quality Improvement Program were analyzed...
February 23, 2016: Journal of the American College of Cardiology
Melissa Gerstle, Dean W Beebe, Dennis Drotar, Amy Cassedy, Bradley S Marino
OBJECTIVE: To investigate the presence and severity of real-world impairments in executive functioning-responsible for children's regulatory skills (metacognition, behavioral regulation)-and its potential impact on school performance among pediatric survivors of complex congenital heart disease (CHD). STUDY DESIGN: Survivors of complex CHD aged 8-16 years (n = 143) and their parents/guardians from a regional CHD survivor registry participated (81% participation rate)...
June 2016: Journal of Pediatrics
P Hausmann, A Stenger, S Dittrich, R Cesnjevar, A Rüffer, M Hammon, M Uder, O Rompel, M Glöckler
PURPOSE: To assess fields of application and value of dual source computed tomography (DSCT) for diagnostics and therapy in patients with congenital heart disease during their first year of life. Evaluation of image quality, surgical use and radiation exposure of 2nd and 3 rd generation DSCT. MATERIALS AND METHODS: DSCT was applied in 118 cases between January 2012 and October 2014 for diagnostics of congenital heart defects. 2nd generation was used in 91 cases until April 2014 and 3 rd generation in 27 cases during the period thereafter...
February 2016: RöFo: Fortschritte Auf Dem Gebiete der Röntgenstrahlen und der Nuklearmedizin
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