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Quality of life pediatric heart

Francesc Torres-Andres, Ericka L Fink, Michael J Bell, Mahesh S Sharma, Eric J Yablonsky, Joan Sanchez-de-Toledo
OBJECTIVES: To identify patient- and disease-related factors related to survival and favorable outcomes for children who underwent extracorporeal cardiopulmonary resuscitation after a refractory cardiac arrest. DESIGN: Retrospective observational study with prospective assessment of long-term functional outcome. PATIENTS: Fifty-six consecutive children undergoing extracorporeal cardiopulmonary resuscitation at our institution from 2007 to 2015...
March 9, 2018: Pediatric Critical Care Medicine
Shaji C Menon, Ragheed Al-Dulaimi, Brian W McCrindle, David J Goldberg, Ritu Sachdeva, Bryan H Goldstein, Thomas Seery, Karen C Uzark, Anjali Chelliah, Ryan Butts, Heather Henderson, Tiffanie Johnson, Richard V Williams
INTRODUCTION: We sought to evaluate the prevalence of delayed puberty and abnormal anthropometry and its association with quality of life (QoL) in young Fontan survivors. METHODS: This was a cross-sectional study at 11 Pediatric Heart Network centers. Demographic and clinical data, anthropomety, and Tanner stage were collected. Anthropometric measurements and pubertal stage were compared to US norms. QoL was assessed using Pediatric Quality of Life inventory (PedsQL)...
March 9, 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
Hugo R Martinez, Samuel Wittekind, Roosevelt Bryant, James S Tweddell, Clifford Chin
The objective of this study is to describe identifiable risk factors, complications, and pitfalls while listing pediatric patients for heart transplantation, which is the standard of care for end-stage heart disease in children. Since the introduction of cyclosporine in the 1980s, the management in pediatric heart transplantation has shown consistent improvement, mainly because of technological advances and the integration of multidisciplinary teams in the field. However, the complexity of this patient population makes medical providers vulnerable to complications as a result of undesirable mistakes...
March 2018: Seminars in Thoracic and Cardiovascular Surgery. Pediatric Cardiac Surgery Annual
Alun C Jackson, Rosemary O Higgins, Erica Frydenberg, Rachel P-T Liang, Barbara M Murphy
PURPOSE: Studies of familial coping with a child's chronic condition have highlighted psychological distress; family functioning; and quality of life; as issues that demand coping strategies. There are conflicting findings on impact and coping and a paucity of information about the specific coping challenges for parents of a child with heart disease, with few qualitative studies in this area. The purpose of the study was to explore the way parents coped with their child's heart condition as it impacted on different domains of family functioning...
January 31, 2018: Journal of Pediatric Nursing
Carson Fox, Steven Chopski, Nohra Murad, Paul Allaire, Robert Mentzer, Joseph Rossano, Francisco Arabia, Amy Throckmorton
Clinical studies using total artificial hearts (TAHs) have demonstrated that pediatric and adult patients derive quality-of-life benefits from this form of therapy. Two clinically-approved TAHs and other pumps under development, however, have design challenges and limitations, including thromboembolic events, neurologic impairment, infection risk due to large size and percutaneous drivelines, and lack of ambulation, to name a few. To address these limitations, we are developing a hybrid-design, continuous-flow, implantable or extracorporeal, magnetically-levitated TAH for pediatric and adult patients with heart failure...
January 18, 2018: Artificial Organs
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
Samantha L Schoell, Ashley A Weaver, Jennifer W Talton, Ryan T Barnard, Gretchen Baker, Joel D Stitzel, Mark R Zonfrillo
OBJECTIVE: Characterization of the severity of injury should account for both mortality and disability. The objective of this study was to develop a disability metric for thoracic injuries in motor vehicle crashes (MVCs), and compare the functional outcomes between the pediatric and adult populations. METHODS: Disability risk (DR) was quantified using Functional Independence Measure (FIM) scores within the National Trauma Data Bank for the most frequently occurring Abbreviated Injury Scale (AIS) 2-5 thoracic injuries...
November 29, 2017: Traffic Injury Prevention
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
Dianne L Atkins, Allan R de Caen, Stuart Berger, Ricardo A Samson, Stephen M Schexnayder, Benny L Joyner, Blair L Bigham, Dana E Niles, Jonathan P Duff, Elizabeth A Hunt, Peter A Meaney
This focused update to the American Heart Association guidelines for cardiopulmonary resuscitation (CPR) and emergency cardiovascular care follows the Pediatric Task Force of the International Liaison Committee on Resuscitation evidence review. It aligns with the International Liaison Committee on Resuscitation's continuous evidence review process, and updates are published when the International Liaison Committee on Resuscitation completes a literature review based on new science. This update provides the evidence review and treatment recommendation for chest compression-only CPR versus CPR using chest compressions with rescue breaths for children <18 years of age...
January 2, 2018: Circulation
Andrea L Austin, Carmen N Spalding, Katrina N Landa, Brian R Myer, Cure Donald, Jason E Smith, Gerald Platt, Heather C King
OBJECTIVES: In effort to improve chest compression quality among health care providers, numerous feedback devices have been developed. Few studies, however, have focused on the use of cardiopulmonary resuscitation feedback devices for infants and children. This study evaluated the quality of chest compressions with standard team-leader coaching, a metronome (MetroTimer by ONYX Apps), and visual feedback (SkillGuide Cardiopulmonary Feedback Device) during simulated infant cardiopulmonary resuscitation...
October 27, 2017: Pediatric Emergency Care
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
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...
January 2018: Current Opinion in Cardiology
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...
January 2018: Pediatric Cardiology
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
Maria Alejandra Forero Molina, Elizabeth Garcia, Deyanira Gonzalez-Devia, Rafael García-Duperly, Alonso Vera
BACKGROUND: Neuroendocrine tumors (NETs) are heterogeneous neoplasms that originate from cells with a secretory function. Small bowel NETs (SB-NETs) are related to serotonin hypersecretion which causes: flushing, diarrhea, abdominal pain, bronchoconstriction and heart involvement, also known as carcinoid syndrome (CS). CS can be confused with an allergic reaction and thus should be considered as a differential diagnosis in the allergy consult. We present the case of a pediatric patient initially referred under the suspicion of food allergies...
2017: World Allergy Organization Journal
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
Damien Bonnet, Felix Berger, Eero Jokinen, Paul F Kantor, Piers E F Daubeney
BACKGROUND: Heart rate reduction as a therapeutic target has been investigated in adults with heart failure (HF). Ivabradine has shown promising efficacy, but has not been evaluated in children. Currently, treatment recommendations for chronic pediatric HF are based mainly on chronic HF guidelines for adults. OBJECTIVES: The authors explored the dose-response relationship of ivabradine in children with dilated cardiomyopathy and symptomatic chronic HF. The primary endpoint was ≥20% reduction in heart rate from baseline without inducing bradycardia or symptoms...
September 5, 2017: Journal of the American College of Cardiology
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...
December 2017: Pediatric Cardiology
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...
February 2018: Archives of Disease in Childhood
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