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Quality of life congenital heart disease

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
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
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...
February 22, 2018: Infectious Diseases and Therapy
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
Tadahisa Sugiura, Goki Matsumura, Shinka Miyamoto, Hideki Miyachi, Christopher K Breuer, Toshiharu Shinoka
OBJECTIVE: 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
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))...
February 1, 2018: Epilepsy & Behavior: E&B
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
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
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
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
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
S-B-P Ferreira, M-M Viana, N-G-F Maia, L-L Leao, R-A Machado, R-D Coletta, M-J-B de Aguiar, H Martelli-Junior
BACKGROUND: Williams-Beuren syndrome (WBS; OMIM #194050) is a developmental disorder characterized by congenital heart disease, intellectual disability, dysmorphic facial features and ophthalmologic abnormalities. Oral abnormalities are also described in clinical manifestations of the disease. This paper describes orofacial features in patients with WBS. MATERIAL AND METHODS: Seventeen patients with a confirmed molecular diagnosis of WBS were examined for oral abnormalities through clinical oral evaluations and panoramic radiography...
December 23, 2017: Medicina Oral, Patología Oral y Cirugía Bucal
Ralph Schmidt, Istvan Majer, Natalia García Román, Alejandra Rivas Basterra, ElizaBeth Grubb, Constancio Medrano López
BACKGROUND: Respiratory syncytial virus (RSV) infection remains one of the major reasons of re-hospitalization among children with congenital heart disease (CHD). This study estimated the cost-effectiveness of palivizumab prophylaxis versus placebo, in Spain, from the societal perspective, using a novel cost-effectiveness model reflecting evidence-based clinical pathways. METHODS: A decision-analytic model, combining a decision tree structure in the first year and a Markov structure in later years, was constructed to evaluate the benefits and costs associated with palivizumab versus no prophylaxis among children with CHD...
December 19, 2017: Health Economics Review
Jenna L Shackleford, Ptlene Minick, Susan J Kelley
The purpose of this study was to understand nurses' perceptions and experiences regarding Quality of Life (QOL) of adolescents with complex congenital heart disease (CHD). Interpretive, hermeneutic, phenomenology was used to explore the perceptions and experiences of nurses who care for adolescents with complex CHD. The participants included 6 female registered nurses with experience taking care of adolescents with complex CHD. Data were collected using semi-structured interviews. Data analysis revealed 4 themes: QOL depends on how the psychological and social issues are interwoven with the physical; finding that balance between overprotection and too much freedom; setting goals to envision a future; and not being defined by a CHD...
December 13, 2017: Comprehensive Child and Adolescent Nursing
Diamantis I Tsilimigras, Evangelos K Oikonomou, Demetrios Moris, Dimitrios Schizas, Konstantinos P Economopoulos, Konstantinos S Mylonas
BACKGROUND: Congenital heart disease (CHD) constitutes the most prevalent and heterogeneous group of congenital anomalies. Although surgery remains the gold standard treatment modality, stem cell therapy has been gaining ground as a complimentary or alternative treatment option in certain types of CHD. The aim of this study was to present the existing published evidence and ongoing research efforts on the implementation of stem cell-based therapeutic strategies in CHD. METHODS: A systematic review was conducted by searching Medline, ClinicalTrials...
December 12, 2017: Circulation
Ari Cedars, Christina Vanderpluym, Devin Koehl, Ryan Cantor, Shelby Kutty, James K Kirklin
BACKGROUND: Adult congenital heart disease (ACHD) prevalence is increasing worldwide, with advanced heart failure (HF) as a leading cause of death. Limited data are available on durable mechanical circulatory support (MCS) in ACHD patients. METHODS: ACHD patients from the Interagency Registry for Mechanically Assisted Circulatory Support (INTERMACS) database were identified and propensity matched with non-ACHD patients using risk factors from the INTERMACS Seventh Annual Report...
November 17, 2017: Journal of Heart and Lung Transplantation
Robert Tulloh, Kostas Dimopoulos, Robin Condliffe, Paul Clift
BACKGROUND: Pulmonary arterial hypertension (PAH) is a well-recognised complication of adult congenital heart disease (CHD). However, management is not currently standardised between centres and specific guidelines are lacking. In order to identify and understand the unmet needs related to PAH associated with CHD (PAH-CHD), a survey of physicians was performed. METHODS: An electronic survey was sent to two physician groups: (1) cardiologists registered in a UK cardiology directory; (2) specialist pulmonary hypertension (PH) physicians known to manage patients with adult PAH-CHD...
November 13, 2017: Heart, Lung & Circulation
Adam McKillop, Brian W McCrindle, Gina Dimitropoulos, Adrienne H Kovacs
OBJECTIVE: A physically active lifestyle can help maintain positive physical and psychosocial health outcomes among adults with congenital heart disease (CHD). This study explored the physical activity perceptions and behaviors among young adults with CHD. DESIGN: This was a cross-sectional, mixed-methods study that included objectively measured physical activity assessment (accelerometer), individual semistructured interviews, and psychosocial questionnaires. RESULTS: Fifteen participants (67% male; 21 ± 3 years old) with moderate (n = 10) or complex (n = 5) CHD were recruited from an outpatient adult CHD clinic...
November 23, 2017: Congenital Heart Disease
Meghan Rombeek, Stefanie De Jesus, Luis Altamirano-Diaz, Eva Welisch, Harry Prapavessis, Jamie A Seabrook, Kambiz Norozi
Background: Both obesity and congenital heart disease (CHD) are risk factors for the long-term cardiovascular health of children and adolescents. The addition of smart mobile technology to conventional lifestyle counseling for weight management offers great potential to appeal to technologically literate youth and can address a large geographical area with minimal burden to participants. This pilot study seeks to examine the influence of a 1-year lifestyle intervention on nutrition and physical activity-related health outcomes in overweight or obese children and adolescents with CHD...
2017: Pilot and Feasibility Studies
Amy Peterson Case, Stephanie D Miller, Monica R McClain
BACKGROUND: Most states have now passed legislation mandating pulse oximetry for all newborns, or have promulgated regulations or guidelines to encourage use of routine pulse oximetry. State-based birth defects registries may be well positioned to track and evaluate critical congenital heart disease (CCHD) screening coverage and outcomes. This purpose of this study was to determine: (1) the proportion of cases detected by screening, (2) health services use by children with CCHDs during the first year of life, and (3) mortality outcomes...
November 1, 2017: Birth defects research
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