Article
Cardiac & Cardiovascular Systems
Amy Jo Lisanti, Karen C. Uzark, Tondi M. Harrison, Jennifer K. Peterson, Samantha C. Butler, Thomas A. Miller, Kiona Y. Allen, Steven P. Miller, Courtney E. Jones
Summary: Developmental disorders, disabilities, and delays are common in individuals with complex congenital heart disease. This science advisory aims to address the need for early intervention and research on developmental care for these patients, emphasizing the potential benefits for health and neurodevelopmental outcomes. It calls for support from various stakeholders to prioritize funding and hospital-based infrastructure for developmental care interventions in this population, highlighting the importance of research and implementation in the next decade.
JOURNAL OF THE AMERICAN HEART ASSOCIATION
(2023)
Article
Pediatrics
Hannah Ferentzi, Ralph C. A. Rippe, Jos M. Latour, Stephan Schubert, Alona Girch, Michaela Jonebratt Stocker, Constanze Pfitzer, Joachim Photiadis, Eugen Sandica, Felix Berger, Katharina R. L. Schmitt
Summary: This study aims to investigate the impact of Family-centered Care practices on parent and infant outcomes in infants with Congenital Heart Disease. Data will be collected and analyzed to provide insight into the relationship between FCC and health outcomes in a pediatric cardiology setting.
FRONTIERS IN PEDIATRICS
(2021)
Article
Pediatrics
Danielle S. Burstein, J. William Gaynor, Heather Griffis, Alyssa Ritter, Matthew J. O'Connor, Joseph W. Rossano, Kimberly Y. Lin, Rebecca C. Ahrens-Nicklas
Summary: This study found that increased genetic variant burden, including pathogenic variants and variants of unknown significance (VUS), is associated with worse clinical outcomes in dilated cardiomyopathy (DCM) but not in hypertrophic cardiomyopathy (HCM) in pediatric patients. Genetic variants that influence the onset of CM may differ from those driving disease progression, highlighting the potential value of universal genetic testing for risk stratification in pediatric CM.
PEDIATRIC RESEARCH
(2021)
Article
Biochemistry & Molecular Biology
Vasily N. Aushev, Qian Li, Maya Deyssenroth, Wei Zhang, Jackie Finik, Yasmin L. Hurd, Yoko Nomura, Jia Chen
Summary: By analyzing placental co-expression modules, it was found that some modules were associated with maternal psychosocial stress during pregnancy (MPSP) and infant temperament, supporting the idea that the placenta provides a functional link between MPSP and infant temperament.
Article
Nursing
Melissa Elliott, Lori Erickson, Cynthia L. Russell, Matthew Chrisman, Jami Gross Toalson, Amanda Emerson
Summary: This study aimed to explore parents' experience of transition during the interstage period of an infant with single ventricle congenital heart disease. The findings highlighted the complexity of parents' psychosocial support needs during this challenging time, emphasizing the importance of targeted efforts to support parents in adjusting to home, self, and child after their child's first palliative surgery.
JOURNAL OF ADVANCED NURSING
(2021)
Article
Nursing
Amy Jo Lisanti, Jungwon Min, Nadya Golfenshtein, Chitra Ravishankar, John M. Costello, Liming Huang, Desiree Fleck, Barbara Medoff-Cooper
Summary: This study aimed to describe the growth trajectory of weight-for-age Z-score (WAZ-GT) in infants with complex congenital heart disease (cCHD) after neonatal cardiac surgery and identify potential risk factors. Four distinct classes of WAZ-GT were identified, each with specific clinical and sociodemographic determinants. The findings of this study have implications for identifying infants at risk of poor WAZ-GT and designing interventions to target growth in this vulnerable patient population.
JOURNAL OF PEDIATRIC NURSING-NURSING CARE OF CHILDREN & FAMILIES
(2022)
Article
Cardiac & Cardiovascular Systems
Gerhard-Paul Diller, Stefan Orwat, Astrid Elisabeth Lammers, Robert M. Radke, Fernando De-Torres-Alba, Renate Schmidt, Ursula Marschall, Ulrike M. Bauer, Dominic Enders, Leo Bronstein, Gerrit Kaleschke, Helmut Baumgartner
Summary: This study aimed to provide population-based data on healthcare provision for adults with congenital heart disease (ACHD) and found that cardiology care was associated with superior survival and lower rates of major complications compared to primary care for ACHD patients.
EUROPEAN HEART JOURNAL
(2021)
Article
Cardiac & Cardiovascular Systems
Gerhard-Paul Diller, Stefan Orwat, Astrid Elisabeth Lammers, Robert M. Radke, Fernando De-Torres-Alba, Renate Schmidt, Ursula Marschall, Ulrike M. Bauer, Dominic Enders, Leo Bronstein, Gerrit Kaleschke, Helmut Baumgartner
Summary: This study found that compared to receiving primary care only, ACHD patients receiving cardiology care had lower mortality and major complication rates. However, it is concerning that even in a high resource setting, almost half of ACHD patients are not receiving regular cardiac care. More efforts are needed to ensure appropriate ACHD care for patients.
EUROPEAN HEART JOURNAL
(2021)
Article
Cardiac & Cardiovascular Systems
Shuenn-Nan Chiu, Chun-Wei Lu, Ming-Tai Lin, Chun-An Chen, Mei-Hwan Wu, Jou-Kou Wang
Summary: This study investigates the clinical characteristics of pulmonary hypertension (PH) in adult congenital heart disease (CHD) patients in Taiwan, with a focus on complex CHD. The cumulative incidence of PH in this Asian cohort was similar to that in Western countries. Patients with PH had higher mortality rates, but survival rates were similar across different CHD subtypes.
JOURNAL OF THE AMERICAN HEART ASSOCIATION
(2022)
Article
Psychology, Clinical
Stephanie Tesson, Phyllis N. Butow, Kate Marshall, Peter Fonagy, Nadine A. Kasparian
Summary: Diagnosis and treatment of CHD can pose challenges to the parent-child relationship, with unclear mechanisms. Existing research focuses on parental bonding and parent-child interaction, with mixed results.
HEALTH PSYCHOLOGY REVIEW
(2022)
Article
Nursing
Sharon Y. Irving, Chitra Ravishankar, Mary Miller, Jesse Chittams, Virginia Stallings, Barbara Medoff-Cooper
Summary: This study describes the growth patterns in infants with CHD, showing that they have lower weight, length, and head circumference compared to healthy infants. Infants with single ventricle physiology have higher skinfold thickness at 3-9 months of age.
CLINICAL NURSING RESEARCH
(2022)
Article
Cardiac & Cardiovascular Systems
Emily Morell, Mary Katherine Miller, Minmin Lu, Kevin G. Friedman, Roger E. Breitbart, Jeffrey R. Reichman, Julie McDermott, Lynn A. Sleeper, Elizabeth D. Blume
Summary: This study evaluated the understanding of disease burden and prognosis in children with advanced heart disease by parents and physicians. It found that parents were generally more optimistic than physicians, expecting fewer limitations in physical activity, learning/behavior, and life expectancy for their children. Physicians tended to underestimate symptom burden reported by parents. Interventions involving patient-reported outcomes, parent education, and physician communication tools may be beneficial in aligning perspectives and improving care for these children.
JOURNAL OF THE AMERICAN HEART ASSOCIATION
(2021)
Article
Cardiac & Cardiovascular Systems
Sreehari M. Nair, Bistra Zheleva, Adriana Dobrzycka, Peter Hesslein, Rajeev Sadanandan, R. Krishna Kumar
Summary: This study reports the early results of a population health program for Congenital Heart Disease (CHD) in Kerala, India, showing that through innovative measures, including a web-based application for real-time registration, referral, and tracking of CHD cases, improvements in early identification, referral, and treatment of infants with CHD have been achieved.
Article
Medicine, General & Internal
Flaminia Vena, Lucia Manganaro, Valentina D'Ambrosio, Luisa Masciullo, Flavia Ventriglia, Giada Ercolani, Camilla Bertolini, Carlo Catalano, Daniele Di Mascio, Elena D'Alberti, Fabrizio Signore, Antonio Pizzuti, Antonella Giancotti
Summary: The study revealed the significant impact of congenital heart diseases on fetal hemodynamics and brain growth. Specific types of CHDs may lead to correlations between Doppler velocimetry results and fetal brain abnormalities identified by MRI.
JOURNAL OF CLINICAL MEDICINE
(2022)
Article
Cardiac & Cardiovascular Systems
Andrew H. Smith, Andrew Y. Shin, Sarah Tabbutt, Mousumi Banerjee, Wenying Zhang, Santiago Borasino, Justin J. Elhoff, William Gaynor, Nancy S. Ghanayem, Sara K. Pasquali, James D. St Louis, Subhadra Shashidharan, Michael Ruppe, Kurt R. Schumacher, Michael Gaies, John M. Costello
Summary: This study examined the optimal timing for neonatal cardiac surgery and found that surgery performed between day 2 and day 7 was not associated with mortality or major complications. However, delaying the surgery may increase pre-operative resource use.
JOURNAL OF THORACIC AND CARDIOVASCULAR SURGERY
(2023)