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Quality of life congenital heart disease

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https://www.readbyqxmd.com/read/28197939/prenatal-counseling-of-fetal-congenital-heart-disease
#1
REVIEW
Caroline K Lee
The field of fetal cardiology has advanced greatly over the last two decades and congenital heart defects can now be identified in utero with a high level of accuracy. Prenatal counseling of parents given the news of a fetal cardiac defect is an important role of the fetal cardiologist. Prenatal counseling is a complex task that requires skill to perform and interpret fetal echocardiograms, an understanding of fetal and postnatal cardiovascular physiology, knowledge of therapeutic and surgical options, and of long-term outcomes including quality of life...
January 2017: Current Treatment Options in Cardiovascular Medicine
https://www.readbyqxmd.com/read/28186850/the-use-of-dexmedetomidine-in-pediatric-palliative-care-a-preliminary-study
#2
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/28151866/acute-arterial-embolism-of-left-lower-extremity-caused-by-paradoxical-embolism-in-ebstein-s-anomaly-a-case-report
#3
Jun-Sheng Li, Jie Ma, Zi-Xing Yan, Dong-Ming Cheng, Liang Chang, Hai-Chun Zhang, Jiang-Yan Liu
INTRODUCTION: Ebstein's anomaly is a benign and stable congenital heart disease for asymptomatic patients. Despite a low incidence of Ebstein's anomaly (EA), patients' quality of life can be badly affected by EA without positive surgical intervention. Especially EA is associated with other congenital heart disease, such as the atrial septal defect, patent foramen ovale, and arterial embolism exclude other reasons, it is often considered to be the consequence of paradoxical embolism, and surgical intervention must be conducted...
February 2017: Medicine (Baltimore)
https://www.readbyqxmd.com/read/28149600/quality-of-life-in-adults-living-with-congenital-heart-disease-beyond-morbidity-and-mortality
#4
EDITORIAL
Amanda L Hunter, Lorna Swan
No abstract text is available yet for this article.
December 2016: Journal of Thoracic Disease
https://www.readbyqxmd.com/read/28148316/design-and-initial-results-of-a-programme-for-routine-standardised-longitudinal-follow-up-after-congenital-heart-surgery
#5
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/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/28018896/factors-influencing-neurodevelopment-after-cardiac-surgery-during-infancy
#8
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/27989374/functional-quality-of-life-and-neurodevelopmental-outcomes-after-congenital-cardiac-surgery
#9
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/27957813/neurocognitive-functioning-in-adults-with-congenital-heart-disease
#10
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/27912205/the-prevalence-of-sexual-dysfunction-and-its-association-with-quality-of-life-in-adults-with-congenital-heart-disease
#11
Alexandra Neiman, Salil Ginde, Michael G Earing, Peter J Bartz, Scott Cohen
BACKGROUND: The prevalence of sexual dysfunction (SD) and its impact on quality of life (QOL) in adults with congenital heart disease (CHD) is not well known. The aims of this study were to: determine the prevalence of SD, evaluate the risk factors associated with SD, and determine the association between SD and QOL in adults with CHD. METHODS: This was a cross-sectional study of adults (≥18years) with CHD presenting for routine follow-up at our institution. Subjects completed the CDC HRQOL-14 "Health Days Measure" to assess mental and physical health, and either the Sexual Health Inventory for Men or the Female Sexual Function Index to assess sexual function...
February 1, 2017: International Journal of Cardiology
https://www.readbyqxmd.com/read/27867634/quality-of-life-in-adults-with-congenital-heart-disease-what-matters
#12
COMMENT
Kai G Kahl, Mechthild Westhoff-Bleck
No abstract text is available yet for this article.
October 2016: Journal of Thoracic Disease
https://www.readbyqxmd.com/read/27858403/cardiac-rehabilitation-in-an-adolescent-with-digeorge-syndrome-a-case-report
#13
Dong J Kim, Ka Y Lee, Yuri Choe, Jae Y Han, In S Choi
BACKGROUND: Digeorge syndrome is a rare disease that has variable clinical symptoms resulting from 22q11 deletions, included cardiac abnormality, abnormal face and thymic aplasia, and cognitive impairment. There was a no reports regarding the efficiency of cardiac rehabilitation (CR) in patients with Digeorge syndrome with tetralogy of fallot. CASE REPORT: A 15-year-old girl with DGS visited our CR center. The patient carried out the exercise training 3 times a week for 6 weeks, using a treadmill with electrocardiogram monitoring...
November 18, 2016: European Journal of Physical and Rehabilitation Medicine
https://www.readbyqxmd.com/read/27849657/long-term-follow-up-on-health-related-quality-of-life-after-mechanical-circulatory-support-in-children
#14
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/27843890/predictors-of-memory-deficits-in-adolescents-and-young-adults-with-congenital-heart-disease-compared-to-healthy-controls
#15
Nancy A Pike, Mary A Woo, Marie K Poulsen, Wendy Evangelista, Dylan Faire, Nancy J Halnon, Alan B Lewis, Rajesh Kumar
INTRODUCTION: Adolescents and young adults with congenital heart disease (CHD) show a range of memory deficits, which can dramatically impact their clinical outcomes and quality of life. However, few studies have identified predictors of these memory changes. The purpose of this investigation was to identify predictors of memory deficits in adolescents and young adults with CHD after surgical palliation compared to healthy controls. METHOD: One hundred fifty-six adolescents and young adults (80 CHD and 76 controls; age 14-21 years) were recruited and administered an instrument to assess memory [Wide Range Assessment of Memory and Learning Second Edition - general memory index (GMI) score] and completed questionnaires that measure anxiety, depression, sleepiness, health status, and self-efficacy...
2016: Frontiers in Pediatrics
https://www.readbyqxmd.com/read/27799257/defibrillators-selecting-the-right-device-for-the-right-patient
#16
Sana M Al-Khatib, Paul Friedman, Kenneth A Ellenbogen
Advances in the field of defibrillation have brought to practice different types of devices that include the transvenous implantable cardioverter-defibrillator (ICD) with or without cardiac resynchronization therapy, the subcutaneous ICD (S-ICD), and the wearable cardioverter-defibrillator. To ensure optimal use of these devices and to achieve best patient outcomes, clinicians need to understand how these devices work, learn the characteristics of patients who qualify them for one type of device versus another, and recognize the remaining gaps in knowledge surrounding these devices...
November 1, 2016: Circulation
https://www.readbyqxmd.com/read/27777296/current-therapy-for-hypoplastic-left-heart-syndrome-and-related-single-ventricle-lesions
#17
Richard G Ohye, Dietmar Schranz, Yves D'Udekem
Universally fatal only 4 decades ago, the progress in the 3-stage palliation of hypoplastic left heart syndrome and related single right ventricular lesions has drastically improved the outlook for these patients. Although the stage II operation (hemi-Fontan or bidirectional Glenn) and stage III Fontan procedure have evolved into relatively low-risk operations, the stage I Norwood procedure remains one of the highest-risk and costliest common operations performed in congenital heart surgery. Yet, despite this fact, experienced centers now report hospital survivals of >90% for the Norwood procedure...
October 25, 2016: Circulation
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
#18
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/27678488/health-related-quality-of-life-of-young-people-with-long-term-illnesses-before-and-after-transfer-from-child-to-adult-healthcare
#19
A E While, E Heery, A M Sheehan, I Coyne
BACKGROUND: The numbers of children with long-term illnesses surviving into adulthood and transferring from child to adult services has increased dramatically in the last 30 years. This study aimed to examine health-related quality of life pre- and post-transfer from child to adult healthcare for young people with three long-term illnesses. METHODS: A total of 217 young people with cystic fibrosis, congenital heart defects or diabetes attending child and adult hospital services in Dublin, Ireland completed a questionnaire survey...
January 2017: Child: Care, Health and Development
https://www.readbyqxmd.com/read/27646112/mobile-health-in-adults-with-congenital-heart-disease-current-use-and-future-needs
#20
M J Schuuring, A P Backx, R Zwart, A H Veelenturf, D Robbers-Visser, M Groenink, A Abu-Hanna, N Bruining, M P Schijven, B J Mulder, B J Bouma
OBJECTIVE: Many adults with congenital heart disease (CHD) are affected lifelong by cardiac events, particularly arrhythmias and heart failure. Despite the care provided, the cardiac event rate remains high. Mobile health (mHealth) brings opportunities to enhance daily monitoring and hence timely response in an attempt to improve outcome. However, it is not known if adults with CHD are currently using mHealth and what type of mHealth they may need in the near future. METHODS: Consecutive adult patients with CHD who visited the outpatient clinic at the Academic Medical Center in Amsterdam were asked to fill out questionnaires...
November 2016: Netherlands Heart Journal
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