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Quality of life congenital heart disease

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https://www.readbyqxmd.com/read/28914735/palliative-care-in-neuromuscular-diseases
#1
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
#2
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
#3
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...
2017: 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
#4
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
#5
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
#6
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
#7
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...
August 4, 2017: Journal of Palliative Medicine
https://www.readbyqxmd.com/read/28747022/patient-reported-outcomes-are-associated-with-physical-activity-level-in-adults-with-congenital-heart-disease
#8
Annika Bay, Mikael Dellborg, Malin Berghammer, Camilla Sandberg, Gunnar Engström, Philip Moons, Bengt Johansson
BACKGROUND: In general, adults with congenital heart disease (CHD) have impaired exercise capacity, and approximately 50% do not reach current recommendations on physical activity. Herein we analysed factors associated with physical activity level (PAL) in adults with CHD by using patient-reported outcomes (PRO). METHODS: Patients with CHD (n=471) were randomly selected from the national register on CHD and categorized according to complexity of lesions - simple (n=172, 39...
September 15, 2017: International Journal of Cardiology
https://www.readbyqxmd.com/read/28744764/the-miracle-baby-grows-up-hypoplastic-left-heart-syndrome-in-the-adult
#9
REVIEW
Matthew Lewis, Marlon Rosenbaum
PURPOSE OF REVIEW: Hypoplastic left heart syndrome (HLHS) is characterized by underdevelopment of the mitral valve, left ventricle, and aorta and is ultimately palliated with a single-ventricle repair. Universally fatal in infancy prior to the advent of modern surgical techniques, the majority of HLHS patients will now reach adulthood. However, despite improvements in early survival, the HLHS population continues to face significant morbidity and early mortality. This review delineates common sources of patient morbidity and highlights areas in need of additional research for this growing segment of the adult congenital heart disease population...
August 2017: Current Cardiology Reports
https://www.readbyqxmd.com/read/28730300/health-related-quality-of-life-in-paediatric-patients-with-congenital-heart-defects-association-with-the-type-of-heart-defect-and-the-surgical-technique
#10
A Heusch, H J Kahl, K O Hensel, G Calaminus
The aim of the study was to investigate the impact of a number of surgical interventions for a various congenital cardiac defects (CHDs) on self-reported HRQoL. METHODS: Patients who had received corrective surgery of several congenital heart defects (surgical VSD closure, Fallot, TGA after atrial or arterial switch or Fontan-type circulation for univentricular AV-connection) were interviewed in the office of their home peadiatric cardiologist. HRQoL in children along 7 dimensions was assessed using a standardised questionnaire (PEDQoL); information on the medical case history of each respondent was also collected...
July 20, 2017: Quality of Life Research
https://www.readbyqxmd.com/read/28719389/genetic-contribution-to-neurodevelopmental-outcomes-in-congenital-heart-disease-are-some-patients-predetermined-to-have-developmental-delay
#11
Caitlin K Rollins, Jane W Newburger, Amy E Roberts
PURPOSE OF REVIEW: Neurodevelopmental impairment is common in children with moderate to severe congenital heart disease (CHD). As children live longer and healthier lives, research has focused on identifying causes of neurodevelopmental morbidity that significantly impact long-term quality of life. This review will address the role of genetic factors in predicting neurodevelopmental outcome in CHD. RECENT FINDINGS: A robust literature suggests that among children with various forms of CHD, those with known genetic/extracardiac anomalies are at highest risk of neurodevelopmental impairment...
October 2017: Current Opinion in Pediatrics
https://www.readbyqxmd.com/read/28702947/initial-validation-of-a-healthcare-needs-scale-for-young-people-with-congenital-heart-disease
#12
Chi-Wen Chen, Ciao-Lin Ho, Wen-Jen Su, Jou-Kou Wang, Hung-Tao Chung, Pi-Chang Lee, Chun-Wei Lu, Be-Tau Hwang
AIM: To validate the initial psychometric properties of a Healthcare Needs Scale for Youth with Congenital Heart Disease. BACKGROUND: As the number of patients with congenital heart disease surviving to adulthood increases, the transitional healthcare needs for adolescents and young adults with congenital heart disease require investigation. However, few tools comprehensively identify the healthcare needs of youth with congenital heart disease. DESIGN: A cross-sectional study was employed to examine the psychometric properties of the Healthcare Needs Scale for Youth with Congenital Heart Disease...
July 12, 2017: Journal of Advanced Nursing
https://www.readbyqxmd.com/read/28669511/illness-perceptions-in-adult-congenital-heart-disease-a-multi-center-international-study
#13
Jessica Rassart, Silke Apers, Adrienne H Kovacs, Philip Moons, Corina Thomet, Werner Budts, Junko Enomoto, Maayke A Sluman, Jou-Kou Wang, Jamie L Jackson, Paul Khairy, Stephen C Cook, Raghavan Subramanyan, Luis Alday, Katrine Eriksen, Mikael Dellborg, Malin Berghammer, Bengt Johansson, Gwen R Rempel, Samuel Menahem, Maryanne Caruana, Gruschen Veldtman, Alexandra Soufi, Susan M Fernandes, Kamila S White, Edward Callus, Shelby Kutty, Koen Luyckx
BACKGROUND: Illness perceptions are cognitive frameworks that patients construct to make sense of their illness. Although the importance of these perceptions has been demonstrated in other chronic illness populations, few studies have focused on the illness perceptions of adults with congenital heart disease (CHD). This study examined (1) inter-country variation in illness perceptions, (2) associations between patient characteristics and illness perceptions, and (3) associations between illness perceptions and patient-reported outcomes...
October 1, 2017: International Journal of Cardiology
https://www.readbyqxmd.com/read/28651679/determinants-of-quality-of-life-in-adults-with-chd-an-australian-cohort
#14
Sarah L Eaton, QiFeng Wang, Samuel Menahem
BACKGROUND: Following improved survival rates in children with CHD, their quality of life and its determinants have become increasingly important. As part of a multicentre study entitled "Assessment of Patterns of Patient-Reported Outcomes in Adults with Congenital Heart Disease - International Study", this article reviews the relationships among quality of life, anxiety and depression, sense of coherence, and severity of disease in an Australian cohort of adults with CHD. Methods and results Adults with CHD were recruited from a single, community-based cardiology practice...
June 27, 2017: Cardiology in the Young
https://www.readbyqxmd.com/read/28624838/dental-management-of-pediatric-patients-affected-by-pulmonary-atresia-with-ventricular-septal-defect-a-scoping-review
#15
A Garrocho-Rangel, A-C Echavarría-García, M-A Rosales-Bérber, J Flores-Velázquez, A Pozos-Guillén
BACKGROUND: Congenital Heart Diseases (CHD) involves a wide range of pathological conditions, such as Pulmonary Atresia with Ventricle Septal Defect (PA/VSD). This disorder leads to the systemic circulation of oxygen-poor blood (cyanosis), with associated features and consequences in the oral cavity. MATERIAL AND METHODS: Using scoping review methodology for screening and article selection, the primary objectives of this paper were as follows: first, to pose a research question; second, to identify relevant studies in order to answer the research question; third, to select and retrieve the studies; fourth, to chart the critical data, and finally, to collate, summarize, and report the results from the most important articles on the dental management of children affected with PA/VSD...
July 1, 2017: Medicina Oral, Patología Oral y Cirugía Bucal
https://www.readbyqxmd.com/read/28620608/a-path-to-implement-precision-child-health-cardiovascular-medicine
#16
REVIEW
Marlin Touma, Brian Reemtsen, Nancy Halnon, Juan Alejos, J Paul Finn, Stanley F Nelson, Yibin Wang
Congenital heart defects (CHDs) affect approximately 1% of live births and are a major source of childhood morbidity and mortality even in countries with advanced healthcare systems. Along with phenotypic heterogeneity, the underlying etiology of CHDs is multifactorial, involving genetic, epigenetic, and/or environmental contributors. Clear dissection of the underlying mechanism is a powerful step to establish individualized therapies. However, the majority of CHDs are yet to be clearly diagnosed for the underlying genetic and environmental factors, and even less with effective therapies...
2017: Frontiers in Cardiovascular Medicine
https://www.readbyqxmd.com/read/28607205/brain-injury-and-neurodevelopmental-outcome-in-congenital-heart-disease-a-systematic-review
#17
REVIEW
Mirthe J Mebius, Elisabeth M W Kooi, Catherina M Bilardo, Arend F Bos
CONTEXT: Brain injury during prenatal and preoperative postnatal life might play a major role in neurodevelopmental impairment in infants with congenital heart disease (CHD) who require corrective or palliative surgery during infancy. A systematic review of cerebral findings during this period in relation to neurodevelopmental outcome (NDO), however, is lacking. OBJECTIVE: To assess the association between prenatal and postnatal preoperative cerebral findings and NDO in infants with CHD who require corrective or palliative surgery during infancy...
July 2017: Pediatrics
https://www.readbyqxmd.com/read/28598945/long-term-outcomes-of-pediatric-cardiac-patients-supported-by-extracorporeal-membrane-oxygenation
#18
Matthew D Elias, Barbara-Jo Achuff, Richard F Ittenbach, Chitra Ravishankar, Thomas L Spray, Stephanie Fuller, Lisa M Montenegro, J William Gaynor, Matthew J O'Connor
OBJECTIVE: Extracorporeal membrane oxygenation is an important form of short-term mechanical support in children with cardiac disease, but information on long-term outcomes and quality of life is limited. The primary objective of this study was to determine the long-term outcomes of children previously supported by extracorporeal membrane oxygenation for cardiac etiologies. DESIGN: A retrospective analysis was performed on patients with cardiac disease managed with extracorporeal membrane oxygenation between January 1, 1995, and December 31, 2012, at the Children's Hospital of Philadelphia...
August 2017: Pediatric Critical Care Medicine
https://www.readbyqxmd.com/read/28536530/the-total-artificial-heart-in-end-stage-congenital-heart-disease
#19
REVIEW
Chet R Villa, David L S Morales
The development of durable ventricular assist devices (VADs) has improved mortality rates and quality of life in patients with end stage heart failure. While the use of VADs has increased dramatically in recent years, there is limited experience with VAD implantation in patients with complex congenital heart disease (CHD), despite the fact that the number of patients with end stage CHD has grown due to improvements in surgical and medical care. VAD use has been limited in patients with CHD and end stage heart failure due to anatomic (systemic right ventricle, single ventricle, surgically altered anatomy, valve dysfunction, etc...
2017: Frontiers in Physiology
https://www.readbyqxmd.com/read/28534022/mental-health-problems-in-parents-of-children-with-congenital-heart-disease
#20
REVIEW
Gerasimos A Kolaitis, Maya G Meentken, Elisabeth M W J Utens
This review will provide a concise description of mental health problems in parents of children with a (non-syndromic) congenital heart disease (CHD) during different stressful periods. Predictors of these problems and also implications for clinical practice will be mentioned. Having a child with CHD can be very stressful for parents, who have to face overwhelming emotions and also extra physical, financial, and other practical challenges. Parental distress has been reported in 30-80% of parents and appears not to be related to severity of CHD...
2017: Frontiers in Pediatrics
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