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Quality of life congenital heart disease

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
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...
September 27, 2016: Child: Care, Health and Development
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
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...
September 14, 2016: Infectious Diseases and Therapy
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
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
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
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
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
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
Sunhee Lee, Junga Lee, Jae Young Choi
BACKGROUND: Adolescents with congenital heart disease need to increase their resilience in the face of challenges in order to preserve their health and quality of life. AIMS: This study aimed to develop a resilience improvement program for adolescents with congenital heart disease and also to evaluate any change in resilience and quality of life as a measure of the effectiveness of the resilience improvement programs. METHODS: A nonequivalent control group pretest-posttest study was designed...
July 8, 2016: European Journal of Cardiovascular Nursing
Mechthild Westhoff-Bleck, Juliane Briest, Daniela Fraccarollo, Denise Hilfiker-Kleiner, Lotta Winter, Ulrike Maske, Markus A Busch, Stefan Bleich, Johann Bauersachs, Kai G Kahl
OBJECTIVE: In adult congenital heart disease (ACHD), mental health status and quality of life become important issues due to improved life expectancy. Current literature provides conflicting data regarding mental health status in ACHD. Furthermore, none of the studies so far compared prevalence rates with a matched control group. METHODS: The prevalence of mental disorders was assessed in 150 ACHD using a structured interview, and compared to 12-months estimates of the general German population...
November 1, 2016: Journal of Affective Disorders
Jean-Marc Schleich, Frédéric Schnell, Benoît Brouant, Gerald Phan, Vincent Lafay, Laurent Bonnemains, Marc Bédossa
The number of recreational scuba divers is steadily increasing. In its latest recommendations, the French Federation of Undersea Studies and Sports listed congenital heart disease as a formal and final contraindication to scuba diving. On the other hand, with the progress made in their management, the prognosis and quality of life of patients with congenital heart diseases have improved considerably, enabling them to engage in physical and sports endeavours, which are known to confer general health and psychological benefits...
August 2016: Archives of Cardiovascular Diseases
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
H Chubb, E Rosenthal
Implantable cardioverter-defibrillators (ICD) have an important role in reducing sudden cardiac death in patients with congenital heart disease (CHD); however, the benefit of ICDs needs to be weighed up against both short-term and long-term adverse effects, which are difficult to evaluate in the heterogeneous CHD population. A tailored approach, taking into account risk stratification and patient-specific factors, is needed to select the most appropriate strategy. This review discusses primary and secondary ICD indications, implantation approaches and long-term follow-up...
June 2016: Herzschrittmachertherapie & Elektrophysiologie
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
Birgitta Svensson, Ewa Idvall, Fredrik Nilsson, Petru Liuba
BACKGROUND: As survival of children with CHD needing surgery has improved significantly, the need for follow-up in terms of health-related quality of life has become increasingly important. In this study, we sought to describe health-related quality of life in children with CHD in relation to cardiac surgery. METHODS: A retrospective Swedish National Registry for Congenital Heart Disease survey measured using DISABKIDS chronic generic measure-short version included 337 children (age 9-17 years; 39% girls)...
May 26, 2016: Cardiology in the Young
Peter Zartner
Pacemaker therapy (PMT) in grown-up congenital heart disease (GUCH) must meet the demands of a young, dynamic and heterogeneous group of patients. The duration of the therapy has to be planned for several decades and should be accompanied by an invasive procedure at the very least. Most of the patients enter adulthood with their pacemaker (PM) already implanted; for others the indications can be derived from the published guidelines for GUCH and PMT, but need to be adjusted to the individual situation of the patient...
June 2016: Herzschrittmachertherapie & Elektrophysiologie
Maria Drakouli, Konstantinos Petsios, Vasiliki Matziou
UNLABELLED: Theme: Cardiology Introduction: Measuring quality of life (QoL) in children and adolescents with congenital heart disease (CHD) is of great clinical importance. OBJECTIVE: The aim of the study was: (a) to adapt the PedsQL Cardiac Module for children aged two to 18 years with CHD in a sample of the Greek population; (b) to determine its reliability and validity. METHODS: Forward and backward translation methodology was used. Parents and children completed the instrument during: (a) hospitalization and (b) visits in the paediatric cardiology outpatient department...
May 9, 2016: Nursing Children and Young People
Bradley S Marino, Amy Cassedy, Dennis Drotar, Jo Wray
No abstract text is available yet for this article.
July 2016: Journal of Pediatrics
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