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Congenital heart disease quality

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https://www.readbyqxmd.com/read/29134534/current-status-of-cardiovascular-surgery-in-japan-2013-and-2014-a-report-based-on-the-japan-cardiovascular-surgery-database-jcvsd-1-mission-and-history-of-jcvsd
#1
Shinichi Takamoto, Noboru Motomura, Hiroaki Miyata, Hiroyuki Tsukihara
The Japan Cardiovascular Surgery Database (JCVSD) was created in 2000 with the support of the Society of Thoracic Surgeons (STS). The STS database content was translated to Japanese using the same disease criteria and in 2001, data entry for adult cardiac surgeries was initiated online using the University Hospital Medical Information Network (UMIN). In 2008, data entry for congenital heart surgeries was initiated in the congenital section of JCVSD and preoperative expected mortality (JapanSCORE) in adult cardiovascular surgeries was first calculated using the risk model of JCVSD...
November 13, 2017: General Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29130597/co-occurring-medical-conditions-in-adults-with-down-syndrome-a-systematic-review-toward-the-development-of-health-care-guidelines
#2
REVIEW
George T Capone, Brian Chicoine, Peter Bulova, Mary Stephens, Sarah Hart, Blythe Crissman, Andrea Videlefsky, Katherine Myers, Nancy Roizen, Anna Esbensen, Moya Peterson, Stephanie Santoro, Jason Woodward, Barry Martin, David Smith
Adults with Down syndrome (DS) represent a unique population who are in need of clinical guidelines to address their medical care. The United States Preventive Service Task Force (USPSTF) has developed criteria for prioritizing conditions of public health importance with the potential for providing screening recommendations to improve clinical care. The quality of existing evidence needed to inform clinical guidelines has not been previously reviewed. Using the National Library of Medicine (NLM) database PubMed, we first identified 18 peer reviewed articles that addressed co-occurring medical conditions in adults with DS...
November 12, 2017: American Journal of Medical Genetics. Part A
https://www.readbyqxmd.com/read/29129255/regional-variation-in-quality-of-life-in-patients-with-a-fontan-circulation-a-multinational-perspective
#3
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/29119450/surgical-treatment-for-adult-congenital-heart-disease-consideration-for-indications-and-procedures
#4
REVIEW
Kozo Matsuo, Masashi Kabasawa, Soichi Asano, Shigeru Tateno, Yasutaka Kawasoe, Yoshitomo Okajima, Naoki Hayashida, Hirokazu Murayama
The number of the adult patients with congenital heart diseases (ACHD) continues to grow owing to improvement of surgical results and medical management. Corrective surgery for complex CHD does not always mean complete cure. It is not rare that the patients will visit the cardiology institutes because of secondary lesions due to residua or sequela in adults. Some patients with CHD remain unrepairable with different degree of heart failure and pulmonary arterial hypertension. Association of arrhythmias is common in ACHD patients and sometimes critical...
November 8, 2017: General Thoracic and Cardiovascular Surgery
https://www.readbyqxmd.com/read/29117038/development-and-validation-of-extracorporeal-membrane-oxygenation-mortality-risk-models-for-congenital-diaphragmatic-hernia
#5
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
#6
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
#7
Bettina Reich, Kristina Heye, Ruth Tuura, Ingrid Beck, Kristina Wetterling, Andreas Hahn, Karoline Hofmann, Dietmar Schranz, Hakan Akintürk, Beatrice Latal, Walter Knirsch
OBJECTIVE: Neurodevelopmental impairment and impaired quality of life constitute a major source of morbidity among children with complex congenital heart disease (CHD), in particular for single ventricle morphologies. Risk factors and quality of life determining clinical and neurodevelopmental outcome at two years of age are examined. METHODS: In a two-center cohort study, 48 patients with SV-morphology (26 HLHS, 22 other types of univentricular heart defect) have been examined prior Fontan procedure between 2010 and 2015...
November 2, 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
#8
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
#9
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
#10
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
#11
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
#12
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
https://www.readbyqxmd.com/read/29042698/evaluating-low-kv-dual-source-ct-angiography-by-high-pitch-spiral-acquisition-and-iterative-reconstruction-in-pediatric-congenital-heart-disease-patients
#13
Yohei Marukawa, Shuhei Sato, Takashi Tanaka, Akihiro Tada, Yuichiro Kanie, Susumu Kanazawa
We retrospectively evaluated the qualities of pediatric cardiovascular dual-source computed tomography (DSCT) images reconstructed by sinogram-affirmed iterative reconstruction (SAFIRE) and filtered back projection (FBP). We analyzed the cases of 287 congenital heart disease (CHD) patients < 5 years old, referred to our department in August 2013-March 2015. We divided them into two groups according to tube voltage (70 kVp, n=147; 80 kVp, n=140). All images were acquired by a CARE kV system and reconstructed by FBP and SAFIRE...
October 2017: Acta Medica Okayama
https://www.readbyqxmd.com/read/29028634/establishing-a-successful-transition-care-plan-for-the-adolescent-with-congenital-heart-disease
#14
Christopher Talluto
PURPOSE OF REVIEW: In this review we explore the aspects needed to develop a successful transition program for adolescents with congenital heart disease and the barriers that exist to the development of such a program. RECENT FINDINGS: We review the literature including more recent publications which support the development of a transition program in order to facilitate transfer from the pediatric to the adult healthcare system. SUMMARY: With the development of a successful transition program patients will hopefully receive high-quality, continuous life-long care in the appropriate setting...
October 11, 2017: Current Opinion in Cardiology
https://www.readbyqxmd.com/read/28993401/diagnosis-and-management-of-noncardiac-complications-in-adults-with-congenital-heart-disease-a-scientific-statement-from-the-american-heart-association
#15
REVIEW
George K Lui, Arwa Saidi, Ami B Bhatt, Luke J Burchill, Jason F Deen, Michael G Earing, Michael Gewitz, Jonathan Ginns, Joseph D Kay, Yuli Y Kim, Adrienne H Kovacs, Eric V Krieger, Fred M Wu, Shi-Joon Yoo
Life expectancy and quality of life for those born with congenital heart disease (CHD) have greatly improved over the past 3 decades. While representing a great advance for these patients, who have been able to move from childhood to successful adult lives in increasing numbers, this development has resulted in an epidemiological shift and a generation of patients who are at risk of developing chronic multisystem disease in adulthood. Noncardiac complications significantly contribute to the morbidity and mortality of adults with CHD...
October 9, 2017: Circulation
https://www.readbyqxmd.com/read/28980091/biopsychosocial-predictors-of-quality-of-life-outcomes-in-pediatric-congenital-heart-disease
#16
Michelle M Ernst, Bradley S Marino, Amy Cassedy, Carrie Piazza-Waggoner, Rodney C Franklin, Katherine Brown, Jo Wray
The purpose of this prospective multi-center cross-sectional study was to identify key biopsychosocial factors that impact quality of life (QOL) of youth with congenital heart disease (CHD). Patient-parent pairs were recruited at a regular hospital follow-up visit. Patient- and parent-proxy-reported QOL were assessed using the Pediatric Cardiac Quality of Life Inventory (PCQLI). Wallander's and Varni's disability-stress coping model guided factor selection, which included disease factors, educational impairment, psychosocial stress, child psychological and parent/family factors...
October 4, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28977197/collaborative-quality-improvement-in-the-congenital-heart-defects-development-of-the-assist-consortium-and-a-preliminary-surgical-outcomes-report
#17
Fabio Carmona, Paulo Henrique Manso, Mariana Nicoletti Ferreira, Nana Miura Ikari, Marcelo Biscegli Jatene, Luciana Amato, Aida Luiza Turquetto, Luiz Fernando Caneo
OBJECTIVE: ASSIST is the first Brazilian initiative in building a collaborative quality improvement program in pediatric cardiology and congenital heart disease. The purposes of this manuscript are: (a) to describe the development of the ASSIST project, including the historical, philosophical, organizational, and infrastructural components that will facilitate collaborative quality improvement in congenital heart disease care; (b) to report past and ongoing challenges faced; and (c) to report the first preliminary data analysis...
July 2017: Brazilian Journal of Cardiovascular Surgery
https://www.readbyqxmd.com/read/28971577/development-of-quality-metrics-for-ambulatory-pediatric-cardiology-transposition-of-the-great-arteries-after-arterial-switch-operation
#18
Carissa M Baker-Smith, Karina Carlson, Jose Ettedgui, Takeshi Tsuda, K Anitha Jayakumar, Matthew Park, Nikola Tede, Karen Uzark, Craig Fleishman, David Connuck, Maggie Likes, Daniel J Penny
OBJECTIVE: To develop quality metrics (QMs) for the ambulatory care of patients with transposition of the great arteries following arterial switch operation (TGA/ASO). DESIGN: Under the auspices of the American College of Cardiology Adult Congenital and Pediatric Cardiology (ACPC) Steering committee, the TGA/ASO team generated candidate QMs related to TGA/ASO ambulatory care. Candidate QMs were submitted to the ACPC Steering Committee and were reviewed for validity and feasibility using individual expert panel member scoring according to the RAND-UCLA methodology...
October 2, 2017: Congenital Heart Disease
https://www.readbyqxmd.com/read/28914735/palliative-care-in-neuromuscular-diseases
#19
Marianne de Visser, David J Oliver
PURPOSE OF REVIEW: Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness. Neuromuscular disorders (NMDs) are characterized by progressive muscle weakness, leading to pronounced and incapacitating physical disabilities. Most NMDs are not amenable to curative treatment and would thus qualify for palliative care. Amyotrophic lateral sclerosis is a relentlessly progressive disease, which leads to death about 2 years after onset due to respiratory muscle weakness...
September 13, 2017: Current Opinion in Neurology
https://www.readbyqxmd.com/read/28901228/the-world-database-for-pediatric-and-congenital-heart-surgery-the-dawn-of-a-new-era-of-global-communication-and-quality-improvement-in-congenital-heart-disease
#20
REVIEW
James D St Louis, Hiromi Kurosawa, Richard A Jonas, Nestor Sandoval, Jorge Cervantes, Christo I Tchervenkov, Jeffery P Jacobs, Kisaburo Sakamoto, Giovanni Stellin, James K Kirklin
The World Society for Pediatric and Congenital Heart Surgery was founded with the mission to "promote the highest quality comprehensive cardiac care to all patients with congenital heart disease, from the fetus to the adult, regardless of the patient's economic means, with an emphasis on excellence in teaching, research, and community service." Early on, the Society's members realized that a crucial step in meeting this goal was to establish a global database that would collect vital information, allowing cardiac surgical centers worldwide to benchmark their outcomes and improve the quality of congenital heart disease care...
September 2017: World Journal for Pediatric & Congenital Heart Surgery
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