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Quality of life congenital heart disease

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https://www.readbyqxmd.com/read/28018896/factors-influencing-neurodevelopment-after-cardiac-surgery-during-infancy
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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...
November 15, 2016: 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
#8
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
#9
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
#10
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
#11
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
#12
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
#13
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
https://www.readbyqxmd.com/read/27628014/defining-the-risk-and-associated-morbidity-and-mortality-of-severe-respiratory-syncytial-virus-infection-among-preterm-infants-without-chronic-lung-disease-or-congenital-heart-disease
#14
REVIEW
Josep Figueras-Aloy, Paolo Manzoni, Bosco Paes, Eric A F Simões, Louis Bont, Paul A Checchia, Brigitte Fauroux, Xavier Carbonell-Estrany
INTRODUCTION: The REGAL (RSV Evidence-a Geographical Archive of the Literature) series provide a comprehensive review of the published evidence in the field of respiratory syncytial virus (RSV) in Western countries over the last 20 years. This second publication covers the risk and burden of RSV infection in preterm infants born at <37 weeks' gestational age (wGA) without chronic lung disease or congenital heart disease. METHODS: A systematic review was undertaken for articles published between January 1, 1995 and December 31, 2015...
December 2016: Infectious Diseases and Therapy
https://www.readbyqxmd.com/read/27587501/quality-of-life-for-historic-cavopulmonary-shunt-survivors
#15
Margaret M Steele, Riad Abou Zahr, Paul M Kirshbom, Gary S Kopf, Mohsen Karimi
BACKGROUND: Beginning with Dr William Glenn in 1958, 90 patients with congenital heart lesions underwent cavopulmonary (Glenn) shunts over a 30-year period. In 2015, the follow-up data on this original cohort were reported. The study focuses on the current quality of life of this cohort. METHODS: Of the original 91 cavopulmonary shunt survivors, 14 (ages: 26-59; average length of postsurgical follow-up: 38.4 years) completed the Rand 36-Item Short-Form Health Survey, volume 2 (SF-36v2) quality-of-life survey at clinical office visits, over the phone or via regular mail...
September 2016: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/27511883/parkes-weber-syndrome-diagnostic-and-management-paradigms-a-systematic-review
#16
Igor Banzic, Milos Brankovic, Živan Maksimović, Lazar Davidović, Miroslav Marković, Zoran Rančić
OBJECTIVES: Parkes Weber syndrome is a congenital vascular malformation which consists of capillary malformation, venous malformation, lymphatic malformation, and arteriovenous malformation. Although Parkes Weber syndrome is a clinically distinctive entity with serious complications, it is still frequently misdiagnosed as Klippel-Trenaunay syndrome that consists of the triad capillary malformation, venous malformation, and lymphatic malformation. METHODS: We performed a systematic review investigating clinical, diagnostic, and treatment modalities of Parkes Weber syndrome (PubMed/MEDLINE, Embase, and Cochrane databases)...
August 9, 2016: Phlebology
https://www.readbyqxmd.com/read/27490605/neurodevelopmental-outcomes-in-children-with-congenital-heart-disease-what-can-we-impact
#17
Gil Wernovsky, Daniel J Licht
OBJECTIVES: The objectives of this review are to discuss the scope of neurologic injuries in newborns with congenital heart disease, the mechanisms of injury, including prenatal, pre-, intra-, and postoperative factors, neurodevelopmental outcomes, and therapeutic strategies for the timely intervention and prevention of neurologic injury. DATA SOURCE: MEDLINE and PubMed. CONCLUSION: At the current time, important research is underway to 1) better understand the developing brain in the fetus with complex congenital heart disease, 2) to identify modifiable risk factors in the operating room and ICU to maximize long-term neurodevelopmental outcomes, and 3) develop strategies to improve family psychosocial health, childhood development, and health-related quality of life following hospital discharge...
August 2016: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/27451455/impact-of-surgical-complexity-on-health-related-quality-of-life-in-congenital-heart-disease-surgical-survivors
#18
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...
July 22, 2016: Journal of the American Heart Association
https://www.readbyqxmd.com/read/27448540/effects-of-ehealth-physical-activity-encouragement-in-adolescents-with-complex-congenital-heart-disease-the-prevail-randomized-clinical-trial
#19
Susanne Hwiid Klausen, Lars L Andersen, Lars Søndergaard, Janus Christian Jakobsen, Vibeke Zoffmann, Kasper Dideriksen, Anne Kruse, Ulla Ramer Mikkelsen, Jørn Wetterslev
OBJECTIVE: To assess benefit and harms of adding an eHealth intervention to health education and individual counseling in adolescents with congenital heart disease. DESIGN: Randomized clinical trial. SETTING: Denmark. PATIENTS: A total of 158 adolescents aged 13-16years with no physical activity restrictions after repaired complex congenital heart disease. INTERVENTIONS: PReVaiL consisted of individually tailored eHealth encouragement physical activity for 52weeks...
October 15, 2016: International Journal of Cardiology
https://www.readbyqxmd.com/read/27429539/progression-of-chronic-kidney-disease-after-acute-kidney-injury
#20
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
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