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Quality of life congenital heart disease

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https://www.readbyqxmd.com/read/29129255/regional-variation-in-quality-of-life-in-patients-with-a-fontan-circulation-a-multinational-perspective
#1
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
#2
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
#3
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
#4
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
#5
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
#6
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
#7
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
#8
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
#9
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/29028634/establishing-a-successful-transition-care-plan-for-the-adolescent-with-congenital-heart-disease
#10
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
#11
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
#12
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/28971577/development-of-quality-metrics-for-ambulatory-pediatric-cardiology-transposition-of-the-great-arteries-after-arterial-switch-operation
#13
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
#14
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/28874075/congenital-heart-disease-a-primer-for-the-pediatric-neuropsychologist
#15
Adam R Cassidy, Dawn Ilardi, Susan R Bowen, Lyla E Hampton, Kimberley P Heinrich, Michelle M Loman, Jacqueline H Sanz, Kelly R Wolfe
Congenital heart disease (CHD) affects millions of people worldwide, including over one million children in the United States. Approximately 25% of children born with CHD require intensive surgical intervention within the first year of life. Despite improved rates of survival into adulthood - rates that exceed 90% in the modern era - children and adolescents with CHD remain at risk for neurological injury and a range of neurobehavioral and psychosocial challenges that pose a threat to quality of life across the lifespan...
September 6, 2017: Child Neuropsychology: a Journal on Normal and Abnormal Development in Childhood and Adolescence
https://www.readbyqxmd.com/read/28858551/the-anesthetic-management-for-a-patient-with-trisomy-13
#16
Masanori Tsukamoto, Takashi Hitosugi, Kanako Esaki, Takeshi Yokoyama
Trisomy 13 is a chromosomal disorder that occurs in complete or partial mosaic forms. It is characterized by central apnea, mental retardation, seizure and congenital heart disease. The survival of the patients with trisomy 13 is the majority dying before one month. Trisomy 13 is the worst life prognosis among all trisomy syndromes. It is reported the cause of death is central apnea. Special needs patients with mental retardation are recognized to have poorer oral health condition. Oral health related quality of life reflects daily activity and well-being...
December 0: Anesthesia Progress
https://www.readbyqxmd.com/read/28856395/quality-of-life-is-diminished-in-patients-with-tetralogy-of-fallot-with-mild-residual-disease-a-comparison-of-tetralogy-of-fallot-and-isolated-valvar-pulmonary-stenosis
#17
Shivani M Bhatt, Elizabeth Goldmuntz, Amy Cassedy, Bradley S Marino, Laura Mercer-Rosa
The objective of this study is to compare quality of life (QOL) in patients with mild pulmonary insufficiency (PI) after Tetralogy of Fallot (TOF) repair or after balloon dilation for isolated valvar pulmonary stenosis (VPS). A cross-sectional study of patients with TOF (n = 12) and VPS (n = 19), ages 8-18 years, who underwent cardiac magnetic resonance (CMR) and cardiopulmonary exercise test (CPET) was conducted. Patients with genetic syndromes were excluded. The groups were matched by severity and duration of PI using propensity scores...
August 31, 2017: Pediatric Cardiology
https://www.readbyqxmd.com/read/28855227/health-related-quality-of-life-in-infants-and-toddlers-with-congenital-heart-disease-a-cross-sectional-survey-from-south-india
#18
Manu Raj, Abish Sudhakar, Rinku Roy, Sumi Soman, Libin Antony, Bhavik Champaneri, Raman Krishna Kumar
OBJECTIVE: There are limited data on health-related quality of life (HRQOL) for infants and toddlers with congenital heart disease (CHD). We sought to compare generic HRQOL of infants and toddlers between CHD subjects and controls. DESIGN: Dual-setting, cross-sectional analytical survey. SETTING: We collected HRQOL data on infants and toddlers through a community survey for controls and through a hospital-based survey for those with CHD. PATIENTS: A total of 499 subjects with confirmed CHD in the age group of 1-24 months admitted for elective surgery in the study institution were selected by consecutive sampling...
August 30, 2017: Archives of Disease in Childhood
https://www.readbyqxmd.com/read/28843326/valve-interventions-in-utero-understanding-the-timing-indications-and-approaches
#19
REVIEW
Aleksander Sizarov, Younes Boudjemline
Efficient use of fetal echocardiography has enabled early detection of congenital heart disease and of its often irreversible complications, such as ventricular hypoplasia in case of severe stenosis of the semilunar valves. Experience of the past 25 years has proved that balloon dilatation of the severely stenotic or atretic valve in fetuses as early as the 23rd week of gestation is technically feasible with a learning curve. Reported results regarding the ultimate biventricular circulation outcome after fetal valve intervention are at best controversial, with the desired improvements in the quality of life and cost-benefits of the postnatal treatment being as yet unconfirmed...
September 2017: Canadian Journal of Cardiology
https://www.readbyqxmd.com/read/28777689/the-role-of-pediatric-palliative-care-in-complex-congenital-heart-disease-three-illustrative-cases
#20
Rachna May, Jess Thompson
BACKGROUND: Although the role of pediatric palliative care (PPC) is well described in oncology, neonatal, and pediatric intensive care patients, the involvement of PPC in patients with congenital heart disease (CHD) is not well explored. CHD is a leading cause of neonatal morbidity and can cause ongoing morbidity throughout the course of a child's life. PPC, with its focus on quality of life and longitudinal care through the course of an illness, could be of benefit to this population...
November 2017: Journal of Palliative Medicine
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