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Quality of life congenital heart disease

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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
#1
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
#2
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
https://www.readbyqxmd.com/read/29274148/oral-findings-in-williams-beuren-syndrome
#3
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
https://www.readbyqxmd.com/read/29260345/palivizumab-in-the-prevention-of-severe-respiratory-syncytial-virus-infection-in-children-with-congenital-heart-disease-a-novel-cost-utility-modeling-study-reflecting-evidence-based-clinical-pathways-in-spain
#4
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
https://www.readbyqxmd.com/read/29236545/nurses-perceptions-of-quality-of-life-for-adolescents-with-congenital-heart-disease
#5
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
https://www.readbyqxmd.com/read/29229621/stem-cell-therapy-for-congenital-heart-disease-a-systematic-review
#6
REVIEW
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
https://www.readbyqxmd.com/read/29198868/an-interagency-registry-for-mechanically-assisted-circulatory-support-intermacs-analysis-of-hospitalization-functional-status-and-mortality-after-mechanical-circulatory-support-in-adults-with-congenital-heart-disease
#7
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
https://www.readbyqxmd.com/read/29191503/management-of-adults-with-congenital-heart-disease-and-pulmonary-arterial-hypertension-in-the-uk-survey-of-current-practice-unmet-needs-and-expert-commentary
#8
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
https://www.readbyqxmd.com/read/29171147/physical-activity-perceptions-and-behaviors-among-young-adults-with-congenital-heart-disease-a-mixed-methods-study
#9
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
https://www.readbyqxmd.com/read/29167745/the-use-of-smartphones-to-influence-lifestyle-changes-in-overweight-and-obese-youth-with-congenital-heart-disease-a-single-arm-study-pilot-and-feasibility-study-protocol-smart-heart-trial
#10
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
https://www.readbyqxmd.com/read/29152920/using-state-birth-defects-registries-to-evaluate-regional-critical-congenital-heart-disease-newborn-screening
#11
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
https://www.readbyqxmd.com/read/29129255/regional-variation-in-quality-of-life-in-patients-with-a-fontan-circulation-a-multinational-perspective
#12
MULTICENTER STUDY
Nicholas D Fogleman, Silke Apers, Philip Moons, Stacey Morrison, Samuel G Wittekind, Martha Tomlin, Kathy Gosney, Maayke A Sluman, Bengt Johansson, Junko Enomoto, Mikael Dellborg, Chun-Wei Lu, Raghavan Subramanyan, Koen Luyckx, Werner Budts, Jamie Jackson, Adrienne Kovacs, Alexandra Soufi, Katrine Eriksen, Corina Thomet, Malin Berghammer, Edward Callus, Susan M Fernandes, Maryanne Caruana, Stephen C Cook, Andrew S Mackie, Kamila S White, Paul Khairy, Shelby Kutty, Gruschen Veldtman
BACKGROUND: Impaired quality of life (QOL) is associated with congenital heart disease (CHD) and country of residence; however, few studies have compared QOL in patients with differing complexities of CHD across regional populations. The current study examined regional variation in QOL outcomes in a large multinational sample of patients with a Fontan relative to patients with atrial septal defects (ASDs) and ventricular septal defects (VSDs). METHODS: From the Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease-International Study (APPROACH-IS), 405 patients (163 Fontan and 242 ASD/VSD) across Asia, Europe, and North America provided consent for access to their medical records and completed a survey evaluating QOL (0 to 100 linear analog scale)...
November 2017: American Heart Journal
https://www.readbyqxmd.com/read/29117038/development-and-validation-of-extracorporeal-membrane-oxygenation-mortality-risk-models-for-congenital-diaphragmatic-hernia
#13
Yigit S Guner, Danh V Nguyen, Lishi Zhang, Yanjun Chen, Matthew T Harting, Peter Rycus, Ryan Barbaro, Matteo Di Nardo, Thomas V Brogan, John P Cleary, Peter T Yu
The purpose of our study was to develop and validate extracorporeal membrane oxygenation (ECMO)-specific mortality risk models for congenital diaphragmatic hernia (CDH). We utilized the data from the Extracorporeal Life Support Organization Registry (2000-2015). Prediction models were developed using multivariable logistic regression. We identified 4,374 neonates with CDH with an overall mortality of 52%. Predictive discrimination (C statistic) for pre-ECMO mortality model was C = 0.65 (95% confidence interval, 0...
November 7, 2017: ASAIO Journal: a Peer-reviewed Journal of the American Society for Artificial Internal Organs
https://www.readbyqxmd.com/read/29107358/patient-reported-outcomes-in-adults-with-congenital-heart-disease-inter-country-variation-standard-of-living-and-healthcare-system-factors
#14
Philip Moons, Adrienne H Kovacs, Koen Luyckx, Corina Thomet, Werner Budts, Junko Enomoto, Maayke A Sluman, Hsiao-Ling Yang, Jamie L Jackson, Paul Khairy, Stephen C Cook, Raghavan Subramanyan, Luis Alday, Katrine Eriksen, Mikael Dellborg, Malin Berghammer, Bengt Johansson, Andrew S Mackie, Samuel Menahem, Maryanne Caruana, Gruschen Veldtman, Alexandra Soufi, Susan M Fernandes, Kamila White, Edward Callus, Shelby Kutty, Liesbet Van Bulck, Silke Apers
AIMS: Geographical differences in patient-reported outcomes (PROs) of adults with congenital heart disease (ConHD) have been observed, but are poorly understood. We aimed to: (1) investigate inter-country variation in PROs in adults with ConHD; (2) identify patient-related predictors of PROs; and (3) explore standard of living and healthcare system characteristics as predictors of PROs. METHODS AND RESULTS: Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart disease - International Study (APPROACH-IS) was a cross-sectional, observational study, in which 4028 patients from 15 countries in 5 continents were enrolled...
October 21, 2017: International Journal of Cardiology
https://www.readbyqxmd.com/read/29104017/neurodevelopmental-outcome-and-health-related-quality-of-life-in-children-with-single-ventricle-heart-disease-before-fontan-procedure
#15
Bettina Reich, Kristina Heye, Ruth Tuura, Ingrid Beck, Kristina Wetterling, Andreas Hahn, Karoline Hofmann, Dietmar Schranz, Hakan Akintürk, Beatrice Latal, Walter Knirsch
Neurodevelopmental impairment and impaired quality of life constitute a major source of morbidity among children with complex congenital heart disease, in particular for single-ventricle (SV) morphologies. Risk factors and quality of life determining clinical and neurodevelopmental outcome at 2 years of age are examined. In a 2-center cohort study, 48 patients with SV morphology (26 hypoplastic left heart syndrome and 22 other types of univentricular heart defect) have been examined before Fontan procedure between 2010 and 2015...
December 5, 2017: Seminars in Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29100908/quality-of-life-in-children-participating-in-a-non-selective-inr-self-monitoring-vka-education-programme
#16
Pascal Amedro, Fanny Bajolle, Helena Bertet, Radhia Cheurfi, Dominique Lasne, Erika Nogue, Pascal Auquier, Marie-Christine Picot, Damien Bonnet
BACKGROUND: The quality of life (QoL) of children receiving vitamin K antagonist (VKA) treatment has been scarcely studied. AIM: To assess QoL of children, and its evolution, throughout our non-selective international normalized ratio (INR) self-monitoring education programme. METHODS: Children and parents completed QoL questionnaires (Qualin, PedsQL) during education sessions. Scores were compared with those from controls. RESULTS: A total of 111 children (mean±standard deviation age 8...
October 31, 2017: Archives of Cardiovascular Diseases
https://www.readbyqxmd.com/read/29098618/exercise-and-congenital-heart-disease
#17
Junnan Wang, Bin Liu
Exercise is an essential part of the physical and mental health. However, many doctors and patients have a conservative attitude to participate in exercise in patients with congenital heart disease (CHD). Exercise in patients with CHD is a relatively new and controversial field. Taking into account the involvement of exercise in patients with CHD is likely to induce acute cardiovascular events and even sudden death; many doctors have a conservative attitude to participate in exercise in patients with CHD, leading to the occurrence of excessive self-protection...
2017: Advances in Experimental Medicine and Biology
https://www.readbyqxmd.com/read/29082114/an-interspecies-heart-to-heart-using-xenopus-to-uncover-the-genetic-basis-of-congenital-heart-disease
#18
Alexandra MacColl Garfinkel, Mustafa K Khokha
PURPOSE OF REVIEW: Given the enormous impact congenital heart disease has on child health, it is imperative that we improve our understanding of the disease mechanisms that underlie patient phenotypes and clinical outcomes. This review will outline the merits of using the frog model, Xenopus, as a tool to study human cardiac development and left-right patterning mechanisms associated with congenital heart disease. RECENT FINDINGS: Patient-driven gene discovery continues to provide new insight into the mechanisms of congenital heart disease, and by extension, patient phenotypes and outcomes...
June 2017: Current Pathobiology Reports
https://www.readbyqxmd.com/read/29073929/health-related-quality-of-life-of-mothers-of-children-with-congenital-heart-disease-in-a-sub-saharan-setting-cross-sectional-comparative-study
#19
Lidia Sileshi, Endale Tefera
BACKGROUND: While the Health Related Quality of Life of the children with congenital heart defects is primarily affected, caring for a child with birth defect has an impact on the family's quality of life as well. Understanding the level of quality of life of the parents, which is likely to vary in different cultural settings, beliefs and parental educational status may help to implement educational programs and other interventional measures that may improve the HRQOL of parents of such children...
October 26, 2017: BMC Research Notes
https://www.readbyqxmd.com/read/29071790/stress-and-quality-of-life-among-parents-of-children-with-congenital-heart-disease-referred-for-psychological-services
#20
Astrida Kaugars, Clarissa Shields, Cheryl Brosig
OBJECTIVE: The study examined parent stress and health-related quality of life (HRQOL) among families of children with congenital heart disease (CHD) referred for psychological services. METHODS: Parents of 54 children (85% boys) aged 3 to 13 (Mage  = 7.48, SD = 2.38) completed measures to assess parenting stress (Parenting Stress Index - Short Form; Pediatric Inventory for Parents) and the PedsQL Family Impact Module. Medical information was retrieved from medical record review...
October 25, 2017: Congenital Heart Disease
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