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Quality of life congenital heart disease

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https://www.readbyqxmd.com/read/29776964/arrhythmias-in-adult-patients-with-congenital-heart-disease-and-pulmonary-arterial-hypertension
#1
Maria Drakopoulou, Heba Nashat, Aleksander Kempny, Rafael Alonso-Gonzalez, Lorna Swan, Stephen J Wort, Laura C Price, Colm McCabe, Tom Wong, Michael A Gatzoulis, Sabine Ernst, Konstantinos Dimopoulos
OBJECTIVES: Approximately 5%-10% of adults with congenital heart disease (CHD) develop pulmonary arterial hypertension (PAH), which affects life expectancy and quality of life. Arrhythmias are common among these patients, but their incidence and impact on outcome remains uncertain. METHODS: All adult patients with PAH associated with CHD (PAH-CHD) seen in a tertiary centre between 2007 and 2015 were followed for new-onset atrial or ventricular arrhythmia. Clinical variables associated with arrhythmia and their relation to mortality were assessed using Cox analysis...
May 18, 2018: Heart: Official Journal of the British Cardiac Society
https://www.readbyqxmd.com/read/29707966/the-effect-of-exercise-training-in-symptomatic-patients-with-grown-up-congenital-heart-disease-a-review
#2
Jean-Luc Q Hooglugt, Alexandra C van Dissel, Ilja M Blok, Ferdinand H de Haan, Harald T Jørstad, Berto J Bouma, Barbara J M Mulder, Michiel M Winter
The number of grown-up congenital heart disease (GUCH) patients is steadily increasing. Unfortunately, the majority of these patients suffer from late sequelae, with heart failure being the most common cause of death. Exercise training is beneficial and safe in patients with acquired heart failure, as well as in asymptomatic GUCH patients. However, its effect remains unknown in symptomatic GUCH patients. This could cause reticence on positive sports advice, with possible counterproductive effects. Areas covered: A review of current literature was performed to evaluate the effect of exercise training in symptomatic (NYHA≥2) GUCH patients...
May 4, 2018: Expert Review of Cardiovascular Therapy
https://www.readbyqxmd.com/read/29686545/effects-of-eplerenone-on-markers-of-myocardial-fibrosis-6-minute-walk-distance-and-quality-of-life-in-adults-with-tetralogy-of-fallot-and-complete-transposition-of-the-great-arteries
#3
Sandeep S Sodhi, Tony J Zhang, Rachel McDonald, Vanessa Al Rashida, Nitin Kondapalli, Philip Barger, Philip Ludbrook, Ari M Cedars
Ventricular dysfunction is common among patients with repaired cyanotic congenital heart disease. To date, no pharmacologic intervention has been demonstrated to be beneficial in this setting. To begin addressing this knowledge gap, we conducted a single-center prospective, randomized, open-label pilot study to investigate the effects of eplerenone on serologic markers of collagen turnover and inflammation, 6-minute walk distance, and quality of life in patients with tetralogy of Fallot (TOF) or transposition of the great arteries with a systemic right ventricle (transposition of the great arteries [TGA])...
January 2018: Proceedings of the Baylor University Medical Center
https://www.readbyqxmd.com/read/29685887/cardiopulmonary-resuscitation-in-infants-and-children-with-cardiac-disease-a-scientific-statement-from-the-american-heart-association
#4
REVIEW
Bradley S Marino, Sarah Tabbutt, Graeme MacLaren, Mary Fran Hazinski, Ian Adatia, Dianne L Atkins, Paul A Checchia, Allan DeCaen, Ericka L Fink, George M Hoffman, John L Jefferies, Monica Kleinman, Catherine D Krawczeski, Daniel J Licht, Duncan Macrae, Chitra Ravishankar, Ricardo A Samson, Ravi R Thiagarajan, Rune Toms, James Tweddell, Peter C Laussen
Cardiac arrest occurs at a higher rate in children with heart disease than in healthy children. Pediatric basic life support and advanced life support guidelines focus on delivering high-quality resuscitation in children with normal hearts. The complexity and variability in pediatric heart disease pose unique challenges during resuscitation. A writing group appointed by the American Heart Association reviewed the literature addressing resuscitation in children with heart disease. MEDLINE and Google Scholar databases were searched from 1966 to 2015, cross-referencing pediatric heart disease with pertinent resuscitation search terms...
April 23, 2018: Circulation
https://www.readbyqxmd.com/read/29681176/-genetic-heterogeneity-and-complexity-of-congenital-heart-defects
#5
Dóra Nagy, Márta Széll
Congenital heart defects are the most common birth defects, they account for approximately one third of all cases. They are clinically heterogeneous, vary widely in severity, treatability and prognosis and may occur as part of multiple developmental disorders, such as chromosome aberrations, microdeletion syndromes and monogenic diseases, or as isolated defects. Syndromic forms account for 25-40%, isolated forms for 60-75% of all cases. With conventional cytogenetic and next-generation molecular genetic methods, numerous genetic alterations have been identified in evolutionarily highly conserved genes of transcriptional regulators, signaling molecules and structural proteins, which are critical to normal cardiogenesis, mostly in cases with syndromic congenital heart defects...
April 2018: Orvosi Hetilap
https://www.readbyqxmd.com/read/29661025/self-efficacy-as-a-predictor-of-patient-reported-outcomes-in-adults-with-congenital-heart-disease
#6
Corina Thomet, Philip Moons, Markus Schwerzmann, Silke Apers, Koen Luyckx, Erwin N Oechslin, Adrienne H Kovacs
OBJECTIVE: Self-efficacy is a known predictor of patient-reported outcomes in individuals with acquired diseases. With an overall objective of better understanding patient-reported outcomes in adults with congenital heart disease, this study aimed to: (i) assess self-efficacy in adults with congenital heart disease, (ii) explore potential demographic and medical correlates of self-efficacy and (iii) determine whether self-efficacy explains additional variance in patient-reported outcomes above and beyond known predictors...
April 1, 2018: European Journal of Cardiovascular Nursing
https://www.readbyqxmd.com/read/29599167/quality-of-life-in-young-people-with-congenital-heart-disease-is-better-than-expected
#7
Barbara Reiner, Renate Oberhoffer, Peter Ewert, Jan Müller
OBJECTIVES: Improved treatments for patients with congenital heart disease (CHD) have led to a growing interest in long-term functional outcomes such as health-related quality of life (HRQoL). Studies on HRQoL in children with CHD have contradicting results. Therefore, we compared HRQoL of children with CHD with that of current healthy peers and stratify CHD cases by severity and diagnostic subgroups. METHODS: We included 514 patients (191 girls) aged 7-17 (12.9±3...
March 29, 2018: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29572215/health-related-quality-of-life-in-congenital-heart-disease-surgery-in-children-and-young-adults-a-systematic-review-and-meta-analysis
#8
Laila Akbar Ladak, Babar Sultan Hasan, Janice Gullick, Robyn Gallagher
BACKGROUND: As survival improves in the congenital heart disease (CHD) population, health-related quality of life (HRQOL) outcomes become increasingly important. While surgery improves survival, poor HRQOL occurs postoperatively and cardiac-related HRQOL outcomes are rarely reported. OBJECTIVE: To conduct a systematic review and meta-analyses of general and cardiac-related HRQOL in CHD surgical children and young adults. METHOD: Medline, CINAHL and EMBASE were searched...
March 23, 2018: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/29552750/congenital-heart-disease-patients-and-parents-perception-of-disease-specific-knowledge-health-and-impairments-in-everyday-life
#9
Paul C Helm, Sebastian Kempert, Marc-André Körten, Wiebke Lesch, Katharina Specht, Ulrike M M Bauer
BACKGROUND: Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients' and parents' perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions. MATERIALS AND METHODS: Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD)...
January 25, 2018: Congenital Heart Disease
https://www.readbyqxmd.com/read/29544423/a-randomized-trial-comparing-cardiac-rehabilitation-to-standard-of-care-for-adults-with-congenital-heart-disease
#10
Alexander R Opotowsky, Jonathan Rhodes, Michael J Landzberg, Ami B Bhatt, Keri M Shafer, Doreen DeFaria Yeh, Scott E Crouter, Ana Ubeda Tikkanen
BACKGROUND: Cardiac rehabilitation (CR) improves exercise capacity and quality of life while reducing mortality in adults with acquired heart disease. Cardiac rehabilitation has not been extensively studied in adults with congenital heart disease (CHD). METHODS: We performed a prospective, randomized controlled trial (NCT01822769) of a 12-week clinical CR program compared with standard of care (SOC). Participants were ≥16 years old, had moderate or severe CHD, had O2 saturation ≥92%, and had peak O2 consumption ([Formula: see text]) < 80% predicted...
March 2018: World Journal for Pediatric & Congenital Heart Surgery
https://www.readbyqxmd.com/read/29492389/neonatal-heart-transplantation
#11
Mohan John, Leonard L Bailey
Neonatal heart transplantation was developed and established in the 1980's as a durable modality of therapy for complex-uncorrectable heart disease. Patients transplanted in the neonatal period have experienced unparalleled long-term survival, better than for any other form of solid-organ transplantation. However, the limited availability of neonatal and young infant donors has restricted the indications and applicability of heart transplantation among newborns in the current era. Indications for heart transplantation include congenital heart disease not amenable to other forms of surgical palliation, and cardiomyopathy, including some primary tumors...
January 2018: Annals of Cardiothoracic Surgery
https://www.readbyqxmd.com/read/29470837/past-present-and-future-approaches-to-the-prevention-and-treatment-of-respiratory-syncytial-virus-infection-in-children
#12
REVIEW
Eric A F Simões, Louis Bont, Paolo Manzoni, Brigitte Fauroux, Bosco Paes, Josep Figueras-Aloy, Paul A Checchia, Xavier Carbonell-Estrany
INTRODUCTION: The REGAL (RSV Evidence - A Geographical Archive of the Literature) series has provided a comprehensive review of the published evidence in the field of respiratory syncytial virus (RSV) in Western countries over the last 20 years. This seventh and final publication covers the past, present and future approaches to the prevention and treatment of RSV infection among infants and children. METHODS: A systematic review was undertaken of publications between January 1, 1995 and December 31, 2017 across PubMed, Embase and The Cochrane Library...
March 2018: Infectious Diseases and Therapy
https://www.readbyqxmd.com/read/29457362/a-multinational-observational-investigation-of-illness-perceptions-and-quality-of-life-among-patients-with-a-fontan-circulation
#13
Christina E Holbein, Nicholas D Fogleman, Kevin Hommel, Silke Apers, Jessica Rassart, Philip Moons, Koen Luyckx, Maayke A Sluman, Junko Enomoto, Bengt Johansson, Hsiao-Ling Yang, Mikael Dellborg, Raghavan Subramanyan, Jamie L Jackson, Werner Budts, Adrienne H Kovacs, Stacey Morrison, Martha Tomlin, Kathy Gosney, Alexandra Soufi, Katrine Eriksen, Corina Thomet, Malin Berghammer, Luis Alday, Edward Callus, Susan M Fernandes, Maryanne Caruana, Samuel Menahem, Stephen C Cook, Gwen R Rempel, Kamila White, Paul Khairy, Shelby Kutty, Gruschen Veldtman
OBJECTIVE: First, to compare QOL and illness perceptions between patients with a Fontan circulation and patients with anatomically simple defects (ie, atrial septal defects [ASD] or ventricular septal defects [VSD]). Second, to explore illness perceptions as a mediator of the association between congenital heart disease (CHD) diagnosis and QOL. DESIGN: Cross-sectional observational study. SETTING: Twenty-four cardiology centers from 15 countries across five continents...
February 18, 2018: Congenital Heart Disease
https://www.readbyqxmd.com/read/29427773/tissue-engineered-vascular-grafts-in-children-with-congenital-heart-disease-intermediate-term-follow-up
#14
Tadahisa Sugiura, Goki Matsumura, Shinka Miyamoto, Hideki Miyachi, Christopher K Breuer, Toshiharu Shinoka
Tissue engineering holds great promise for the advancement of cardiovascular surgery as well as other medical fields. Tissue-engineered vascular grafts have the ability to grow and remodel and could therefore make great advances for pediatric cardiovascular surgery. In 2001, we began a human clinical trial evaluating these grafts in patients with a univentricular physiology. Herein, we report the long-term results of patients who underwent implantation of tissue-engineered vascular grafts as extracardiac total cavopulmonary conduits...
February 7, 2018: Seminars in Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29414558/illness-identity-in-young-adults-with-refractory-epilepsy
#15
Koen Luyckx, Leen Oris, Koen Raymaekers, Jessica Rassart, Philip Moons, Ludo Verdyck, Teus Mijnster, Ruth E Mark
INTRODUCTION: Refractory epilepsy is an intrusive condition with important implications for daily functioning in emerging and young adulthood. The present study examined the degree to which refractory epilepsy is integrated in one's identity, and examined how such a sense of illness identity was related to health-related quality of life (HRQOL). METHODS: A total of 121 18- to 40-year-old patients with refractory epilepsy (56.2% women) completed self-report questionnaires assessing the four illness identity states of acceptance, enrichment, engulfment, and rejection (Illness Identity Questionnaire (IIQ)); HRQOL (Quality of Life in Epilepsy Inventory - 31); and seizure frequency and severity (Liverpool Seizure Severity Scale (LSSS))...
March 2018: Epilepsy & Behavior: E&B
https://www.readbyqxmd.com/read/29371373/interventional-treatments-and-risk-factors-in-patients-born-with-hypoplastic-left-heart-syndrome-in-england-and-wales-from-2000-to-2015
#16
Libby Rogers, Christina Pagel, Ian D Sullivan, Muhammed Mustafa, Victor Tsang, Martin Utley, Catherine Bull, Rodney C Franklin, Kate L Brown
OBJECTIVE: To describe the long-term outcomes, treatment pathways and risk factors for patients diagnosed with hypoplastic left heart syndrome (HLHS) in England and Wales. METHODS: The UK's national audit database captures every procedure undertaken for congenital heart disease and updated life status for resident patients in England and Wales. Patients with HLHS born between 2000 and 2015 were identified using codes from the International Paediatric and Congenital Cardiac Code...
January 25, 2018: Heart: Official Journal of the British Cardiac Society
https://www.readbyqxmd.com/read/29353497/-the-significance-of-n-terminal-pro-b-natriuretic-peptide-in-the-management-of-adult-patients-with-congenital-heart-disease-results-from-the-csongrad-registry
#17
COMPARATIVE STUDY
Nóra Ambrus, Kálmán Havasi, Krisztina Berek, Anita Kalapos, István Hartyánszky, Gábor Bogáts, Tamás Forster, Attila Nemes
INTRODUCTION: The prognostic role of B-type natriuretic peptide (BNP) level was confirmed in chronic heart failure and congenital heart diseases irrespective of the aetiology. AIM: The aim of this study was to compare NT‑proBNP measured in the clinical practice and important clinical and echocardiographic parameters in patients with adult congenital heart diseases under our care. METHOD: Data of a total of 70 patients were analysed; 34 patients had corrected tetralogy of Fallot and 19 patients had corrected transposition of the great arteries...
January 2018: Orvosi Hetilap
https://www.readbyqxmd.com/read/29349286/exercise-self-efficacy-in-adults-with-congenital-heart-disease
#18
Annika Bay, Camilla Sandberg, Ulf Thilén, Karin Wadell, Bengt Johansson
Background: Physical activity improves health, exercise tolerance and quality of life in adults with congenital heart disease (CHD), and exercise training is in most patients a high-benefit low risk intervention. However, factors that influence the confidence to perform exercise training, i.e. exercise self-efficacy (ESE), in CHD patients are virtually unknown. We aimed to identify factors related to low ESE in adults with CHD, and potential strategies for being physically active. Methods: Seventy-nine adults with CHD; 38 with simple lesions (16 women) and 41 with complex lesions (17 women) with mean age 36...
March 2018: IJC Heart & Vasculature
https://www.readbyqxmd.com/read/29321028/health-condition-and-familial-factors-associated-with-health-related-quality-of-life-in-adolescents-with-congenital-heart-disease-a-cross-sectional-study
#19
Yu-Mi Im, Tae-Jin Yun, Sunhee Lee
BACKGROUND: The focus of clinical care after the repair of congenital heart disease has shifted from saving life of the patient to the patient's quality of life. The purpose of this study was to examine the health condition and familial factors associated with the health related quality of life of adolescents with congenital heart disease. METHODS: Ninety-eight adolescents aged 13-19 years were collected from a congenital heart clinic from July 22 to August 23, 2013...
January 10, 2018: Health and Quality of Life Outcomes
https://www.readbyqxmd.com/read/29279413/association-between-diastolic-blood-pressure-during-pediatric-in-hospital-cardiopulmonary-resuscitation-and-survival
#20
Robert A Berg, Robert M Sutton, Ron W Reeder, John T Berger, Christopher J Newth, Joseph A Carcillo, Patrick S McQuillen, Kathleen L Meert, Andrew R Yates, Rick E Harrison, Frank W Moler, Murray M Pollack, Todd C Carpenter, David L Wessel, Tammara L Jenkins, Daniel A Notterman, Richard Holubkov, Robert F Tamburro, J Michael Dean, Vinay M Nadkarni
Background -Based on laboratory cardiopulmonary resuscitation (CPR) investigations and limited adult data demonstrating that survival depends on attaining adequate arterial diastolic blood pressure (DBP) during CPR, American Heart Association recommends using BP to guide pediatric CPR. However, evidence-based BP targets during pediatric CPR remain an important knowledge gap for CPR guidelines. Methods -All children ≥37 weeks gestation and <19 years old in Collaborative Pediatric Critical Care Research Network intensive care units with chest compressions for ≥1 minute and invasive arterial blood pressure monitoring prior to and during CPR between July 1, 2013 and June 31, 2016 were included...
December 26, 2017: Circulation
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