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https://www.readbyqxmd.com/read/28921500/growth-hormone-therapy-for-people-with-thalassaemia
#1
REVIEW
Chin Fang Ngim, Nai Ming Lai, Janet Yh Hong, Shir Ley Tan, Amutha Ramadas, Premala Muthukumarasamy, Meow-Keong Thong
BACKGROUND: Thalassaemia is a recessively-inherited blood disorder that leads to anaemia of varying severity. In those affected by the more severe forms, regular blood transfusions are required which may lead to iron overload. Accumulated iron from blood transfusions may be deposited in vital organs including the heart, liver and endocrine organs such as the pituitary glands which can affect growth hormone production. Growth hormone deficiency is one of the factors that can lead to short stature, a common complication in people with thalassaemia...
September 18, 2017: Cochrane Database of Systematic Reviews
https://www.readbyqxmd.com/read/28919116/global-regional-and-national-age-sex-specific-mortality-for-264-causes-of-death-1980-2016-a-systematic-analysis-for-the-global-burden-of-disease-study-2016
#2
(no author information available yet)
BACKGROUND: Monitoring levels and trends in premature mortality is crucial to understanding how societies can address prominent sources of early death. The Global Burden of Disease 2016 Study (GBD 2016) provides a comprehensive assessment of cause-specific mortality for 264 causes in 195 locations from 1980 to 2016. This assessment includes evaluation of the expected epidemiological transition with changes in development and where local patterns deviate from these trends. METHODS: We estimated cause-specific deaths and years of life lost (YLLs) by age, sex, geography, and year...
September 16, 2017: Lancet
https://www.readbyqxmd.com/read/28914735/palliative-care-in-neuromuscular-diseases
#3
Marianne de Visser, David J Oliver
PURPOSE OF REVIEW: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating physical disabilities. Most NMDs are not amenable to curative treatment and would thus qualify for palliative care. Amyotrophic lateral sclerosis is a relentlessly progressive disease, which leads to death about 2 years after onset due to respiratory muscle weakness...
September 13, 2017: Current Opinion in Neurology
https://www.readbyqxmd.com/read/28874075/congenital-heart-disease-a-primer-for-the-pediatric-neuropsychologist
#4
Adam R Cassidy, Dawn Ilardi, Susan R Bowen, Lyla E Hampton, Kimberley P Heinrich, Michelle M Loman, Jacqueline H Sanz, Kelly R Wolfe
Congenital heart disease (CHD) affects millions of people worldwide, including over one million children in the United States. Approximately 25% of children born with CHD require intensive surgical intervention within the first year of life. Despite improved rates of survival into adulthood - rates that exceed 90% in the modern era - children and adolescents with CHD remain at risk for neurological injury and a range of neurobehavioral and psychosocial challenges that pose a threat to quality of life across the lifespan...
September 6, 2017: Child Neuropsychology: a Journal on Normal and Abnormal Development in Childhood and Adolescence
https://www.readbyqxmd.com/read/28859790/ivabradine-in-children-with-dilated-cardiomyopathy-and-symptomatic-chronic-heart-failure
#5
RANDOMIZED CONTROLLED TRIAL
Damien Bonnet, Felix Berger, Eero Jokinen, Paul F Kantor, Piers E F Daubeney
BACKGROUND: Heart rate reduction as a therapeutic target has been investigated in adults with heart failure (HF). Ivabradine has shown promising efficacy, but has not been evaluated in children. Currently, treatment recommendations for chronic pediatric HF are based mainly on chronic HF guidelines for adults. OBJECTIVES: The authors explored the dose-response relationship of ivabradine in children with dilated cardiomyopathy and symptomatic chronic HF. The primary endpoint was ≥20% reduction in heart rate from baseline without inducing bradycardia or symptoms...
September 5, 2017: Journal of the American College of Cardiology
https://www.readbyqxmd.com/read/28855227/health-related-quality-of-life-in-infants-and-toddlers-with-congenital-heart-disease-a-cross-sectional-survey-from-south-india
#6
Manu Raj, Abish Sudhakar, Rinku Roy, Sumi Soman, Libin Antony, Bhavik Champaneri, Raman Krishna Kumar
OBJECTIVE: There are limited data on health-related quality of life (HRQOL) for infants and toddlers with congenital heart disease (CHD). We sought to compare generic HRQOL of infants and toddlers between CHD subjects and controls. DESIGN: Dual-setting, cross-sectional analytical survey. SETTING: We collected HRQOL data on infants and toddlers through a community survey for controls and through a hospital-based survey for those with CHD. PATIENTS: A total of 499 subjects with confirmed CHD in the age group of 1-24 months admitted for elective surgery in the study institution were selected by consecutive sampling...
August 30, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28744980/building-a-comprehensive-team-for-the-longitudinal-care-of-single-ventricle-heart-defects-building-blocks-and-initial-results
#7
Karen Texter, Jo Ann M Davis, Christina Phelps, Sharon Cheatham, John Cheatham, Mark Galantowicz, Timothy F Feltes
INTRODUCTION: With increasing survival of children with HLHS and other single ventricle lesions, the complexity of medical care for these patients is substantial. Establishing and adhering to best practice models may improve outcome, but requires careful coordination and monitoring. METHODS: In 2013 our Heart Center began a process to build a comprehensive Single Ventricle Team designed to target these difficult issues. RESULTS: Comprehensive Single Ventricle Team in 2014 was begun, to standardize care for children with single ventricle heart defects from diagnosis to adulthood within our institution...
July 2017: Congenital Heart Disease
https://www.readbyqxmd.com/read/28730300/health-related-quality-of-life-in-paediatric-patients-with-congenital-heart-defects-association-with-the-type-of-heart-defect-and-the-surgical-technique
#8
A Heusch, H J Kahl, K O Hensel, G Calaminus
The aim of the study was to investigate the impact of a number of surgical interventions for a various congenital cardiac defects (CHDs) on self-reported HRQoL. METHODS: Patients who had received corrective surgery of several congenital heart defects (surgical VSD closure, Fallot, TGA after atrial or arterial switch or Fontan-type circulation for univentricular AV-connection) were interviewed in the office of their home peadiatric cardiologist. HRQoL in children along 7 dimensions was assessed using a standardised questionnaire (PEDQoL); information on the medical case history of each respondent was also collected...
July 20, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28719389/genetic-contribution-to-neurodevelopmental-outcomes-in-congenital-heart-disease-are-some-patients-predetermined-to-have-developmental-delay
#9
Caitlin K Rollins, Jane W Newburger, Amy E Roberts
PURPOSE OF REVIEW: Neurodevelopmental impairment is common in children with moderate to severe congenital heart disease (CHD). As children live longer and healthier lives, research has focused on identifying causes of neurodevelopmental morbidity that significantly impact long-term quality of life. This review will address the role of genetic factors in predicting neurodevelopmental outcome in CHD. RECENT FINDINGS: A robust literature suggests that among children with various forms of CHD, those with known genetic/extracardiac anomalies are at highest risk of neurodevelopmental impairment...
October 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/28716486/the-impact-of-a-peer-support-group-for-children-with-rheumatic-heart-disease-in-uganda
#10
Amy Scheel, Andrea Beaton, Emmy Okello, Chris T Longenecker, Isaac Omara Otim, Peter Lwabi, Craig Sable, Allison R Webel, Twalib Aliku
OBJECTIVE: To assess the impact of a peer-support group on knowledge, quality of life, and social support for children with rheumatic heart disease (RHD). METHODS: Children diagnosed with RHD and receiving 4-weekly injectable penicillin were invited to participate in a monthly support group for 6 months. Pre- and post-intervention assessments included a baseline RHD knowledge assessment, a measure of health related quality of life (HRQOL) (PedsQLTM4.0), and a measure of social support (Hawthorne Friendship Scale)...
July 11, 2017: Patient Education and Counseling
https://www.readbyqxmd.com/read/28659014/optimizing-nutrition-in-pediatric-heart-failure-the-crisis-is-over-and-now-it-s-time-to-feed
#11
Kylie D Lewis, Jennifer Conway, Chentel Cunningham, Bodil M K Larsen
Pediatric heart failure is a complex disease occurring when cardiac output is unable to meet the metabolic demands of the body. With improved surgical interventions and medical therapies, survival rates have improved, and care has shifted from focusing on survival to optimizing quality of life and health outcomes. Based on current literature, this review addresses the nutrition needs of infants and children in heart failure and describes the pathophysiology and metabolic implications of this disease. The prevalence of wasting in pediatric heart failure has been reported to be as high as 86%, highlighting the importance of nutrition assessment through all stages of treatment to provide appropriate intake of energy, protein, and micronutrients...
June 1, 2017: Nutrition in Clinical Practice
https://www.readbyqxmd.com/read/28653137/duchenne-muscular-dystrophy-a-practice-update
#12
Renu Suthar, Naveen Sankhyan
Duchenne Muscular Dystrophy (DMD) is an X-linked recessive disorder caused by a deficient or defective synthesis of dystrophin protein. DMD is the most common form of muscular dystrophy with an incidence of about 1 in 5000 live boys. Though primarily resulting in progressive muscle weakness, it affects various other organs as well. Heart, brain and smooth muscles are commonly involved, because of expression of dystrophin in these organs. The management of DMD requires a multidisciplinary liaison, anticipatory management and prevention of the complications...
June 27, 2017: Indian Journal of Pediatrics
https://www.readbyqxmd.com/read/28651679/determinants-of-quality-of-life-in-adults-with-chd-an-australian-cohort
#13
Sarah L Eaton, QiFeng Wang, Samuel Menahem
BACKGROUND: Following improved survival rates in children with CHD, their quality of life and its determinants have become increasingly important. As part of a multicentre study entitled "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease - International Study", this article reviews the relationships among quality of life, anxiety and depression, sense of coherence, and severity of disease in an Australian cohort of adults with CHD. Methods and results Adults with CHD were recruited from a single, community-based cardiology practice...
June 27, 2017: Cardiology in the Young
https://www.readbyqxmd.com/read/28624838/dental-management-of-pediatric-patients-affected-by-pulmonary-atresia-with-ventricular-septal-defect-a-scoping-review
#14
A Garrocho-Rangel, A-C Echavarría-García, M-A Rosales-Bérber, J Flores-Velázquez, A Pozos-Guillén
BACKGROUND: Congenital Heart Diseases (CHD) involves a wide range of pathological conditions, such as Pulmonary Atresia with Ventricle Septal Defect (PA/VSD). This disorder leads to the systemic circulation of oxygen-poor blood (cyanosis), with associated features and consequences in the oral cavity. MATERIAL AND METHODS: Using scoping review methodology for screening and article selection, the primary objectives of this paper were as follows: first, to pose a research question; second, to identify relevant studies in order to answer the research question; third, to select and retrieve the studies; fourth, to chart the critical data, and finally, to collate, summarize, and report the results from the most important articles on the dental management of children affected with PA/VSD...
July 1, 2017: Medicina Oral, Patología Oral y Cirugía Bucal
https://www.readbyqxmd.com/read/28598945/long-term-outcomes-of-pediatric-cardiac-patients-supported-by-extracorporeal-membrane-oxygenation
#15
Matthew D Elias, Barbara-Jo Achuff, Richard F Ittenbach, Chitra Ravishankar, Thomas L Spray, Stephanie Fuller, Lisa M Montenegro, J William Gaynor, Matthew J O'Connor
OBJECTIVE: Extracorporeal membrane oxygenation is an important form of short-term mechanical support in children with cardiac disease, but information on long-term outcomes and quality of life is limited. The primary objective of this study was to determine the long-term outcomes of children previously supported by extracorporeal membrane oxygenation for cardiac etiologies. DESIGN: A retrospective analysis was performed on patients with cardiac disease managed with extracorporeal membrane oxygenation between January 1, 1995, and December 31, 2012, at the Children's Hospital of Philadelphia...
August 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/28551379/review-of-1-000-consecutive-extracorporeal-membrane-oxygenation-runs-as-a-quality-initiative
#16
Harold N Lovvorn, Daphne C Hardison, Heidi Chen, Ashly C Westrick, Melissa E Danko, Brian C Bridges, William F Walsh, John B Pietsch
BACKGROUND: Extracorporeal membrane oxygenation is a resource-intensive mode of life-support potentially applicable when conventional therapies fail. Given the initial success of extracorporeal membrane oxygenation to support neonates and infants in the 1980s, indications have expanded to include adolescents, adults, and selected moribund patients during cardiopulmonary resuscitation. This single-institution analysis was conducted to evaluate programmatic growth, outcomes, and risk for death despite extracorporeal membrane oxygenation across all ages and diseases...
August 2017: Surgery
https://www.readbyqxmd.com/read/28551303/-quality-of-life-heart-disease-children-who-have-suffered-from-an-arterial-ischemic-stroke
#17
María Vázquez López, Pedro Castro de Castro, Nuria Gil Villanueva, Andrés José Alcaraz Romero, Samuel Ignacio Pascual Pascual
No abstract text is available yet for this article.
May 24, 2017: Anales de Pediatría: Publicación Oficial de la Asociación Española de Pediatría (A.E.P.)
https://www.readbyqxmd.com/read/28534022/mental-health-problems-in-parents-of-children-with-congenital-heart-disease
#18
REVIEW
Gerasimos A Kolaitis, Maya G Meentken, Elisabeth M W J Utens
This review will provide a concise description of mental health problems in parents of children with a (non-syndromic) congenital heart disease (CHD) during different stressful periods. Predictors of these problems and also implications for clinical practice will be mentioned. Having a child with CHD can be very stressful for parents, who have to face overwhelming emotions and also extra physical, financial, and other practical challenges. Parental distress has been reported in 30-80% of parents and appears not to be related to severity of CHD...
2017: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/28521893/pulmonary-hypertension-in-infants-children-and-young-adults
#19
REVIEW
Georg Hansmann
Pulmonary hypertension (PH) in neonates, infants, children, adolescents, and young adults is a complex condition that can be associated with several cardiac, pulmonary, and systemic diseases contributing to morbidity and mortality. The underlying pulmonary hypertensive vascular disease (PHVD) is characterized by inflammation, pulmonary vascular remodeling, and angio-obliteration leading to elevated pulmonary arterial pressure and resistance, right ventricular dysfunction, left ventricular compression, and subsequent heart failure...
May 23, 2017: Journal of the American College of Cardiology
https://www.readbyqxmd.com/read/28516823/predictors-of-health-related-quality-of-life-in-children-with-chronic-heart-disease
#20
Mandy Niemitz, Diana C M Gunst, Hedwig H Hövels-Gürich, Michael Hofbeck, Renate Kaulitz, Christoph Galm, Felix Berger, Nicole Nagdyman, Brigitte Stiller, Thomas Borth-Bruhns, Ines Konzag, Christian Balmer, Lutz Goldbeck
OBJECTIVE: Chronic paediatric heart disease is often associated with residual symptoms, persisting functional restrictions, and late sequelae for psychosocial development. It is, therefore, increasingly important to evaluate the health-related quality of life of children and adolescents with chronic heart disease. The aim of this study was to determine medical and socio-demographic variables affecting health-related quality of life in school-aged children and adolescents with chronic heart disease...
May 18, 2017: Cardiology in the Young
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