4.1 Article

A Predictive Model for Neurodevelopmental Outcome After the Norwood Procedure

期刊

PEDIATRIC CARDIOLOGY
卷 34, 期 2, 页码 327-333

出版社

SPRINGER
DOI: 10.1007/s00246-012-0450-1

关键词

Congenital heart; Neurodevelopment; Outcomes

资金

  1. National Heart, Lung, and Blood Institute [HL068269, HL068270, HL068279, HL068281, HL068285, HL068292, HL068290, HL 068288, HL085057]

向作者/读者索取更多资源

Neurodevelopmental outcomes after the Norwood procedure for single right ventricular lesions are worse than those in the normal population. It would be valuable to identify which patients at the time of Norwood discharge are at greatest risk for neurodevelopmental impairment later in childhood. As such, this study sought to construct and validate a model to predict poor neurodevelopmental outcome using variables readily available to the clinician. Using data from the 14 month neurodevelopmental outcome of the Single-Ventricle Reconstruction (SVR) trial, a classification and regression tree (CART) analysis model was developed to predict severe neurodevelopmental impairment, defined as a Psychomotor Development Index (PDI) score lower than 70 on the Bayley Scales of Infant Development-II. The model then was validated using data from subjects enrolled in the Infant Single Ventricle (ISV) trial. The PDI scores were lower than 70 for 138 (44 %) of 313 subjects. Predictors of a PDI lower than 70 were post-Norwood intensive care unit (ICU) stay longer than 46 days, genetic syndrome or other anomalies, birth weight less than 2.7 kg, additional cardiac surgical procedures, and use of five or more medications at hospital discharge. Using these risk factors, the CART model correctly identified 75 % of SVR subjects with a PDI lower than 70. When the CART model was applied to 70 subjects from the ISV trial, the correct classification rate was 67 %. This model of variables from the Norwood hospitalization can help to identify infants at risk for neurodevelopmental impairment. However, given the overall high prevalence of neurodevelopmental impairment and the fact that nearly one third of severely affected children would not have been identified by these risk factors, close surveillance and assessment for early intervention services are warranted for all infants after the Norwood procedure.

作者

我是这篇论文的作者
点击您的名字以认领此论文并将其添加到您的个人资料中。

评论

主要评分

4.1
评分不足

次要评分

新颖性
-
重要性
-
科学严谨性
-
评价这篇论文

推荐

Article Cardiac & Cardiovascular Systems

Parental post-traumatic stress, overprotective parenting, and emotional and behavioural problems for children with critical congenital heart disease

Linda G. McWhorter, Jennifer Christofferson, Trent Neely, Aimee K. Hildenbrand, Melissa A. Alderfer, Amy Randall, Anne E. Kazak, Erica Sood

Summary: The study explored the relationships between parental post-traumatic stress symptoms, overprotective parenting, and child emotional/behavioral problems in families of children with critical CHD. It found that overprotective parenting fully mediated the association between parental post-traumatic stress symptoms and child emotional/behavioral problems. Both parental post-traumatic stress symptoms and overprotective parenting were identified as modifiable risk factors for poor child outcomes.

CARDIOLOGY IN THE YOUNG (2022)

Article Nursing

Barriers and facilitators to discussing parent mental health within child health care: Perspectives of parents raising a child with congenital heart disease

Melanie K. Franklin, Allison Karpyn, Jennifer Christofferson, Linda G. McWhorter, Abigail C. Demianczyk, Cheryl L. Brosig, Emily A. Jackson, Stacey Lihn, Sinai C. Zyblewski, Anne Kazak, Erica Sood

Summary: This study investigates the barriers and facilitators to discussing parent mental health within child health care for parents of children with CHD. Parents identified multiple barriers to communication, such as the perception that mental health support is beyond the scope of practice, fear of negative judgment, and the preference for compartmentalizing emotions. On the other hand, they also highlighted the importance of a supportive care team who normalizes the impact of the child's illness and creates a comfortable environment for discussions.

JOURNAL OF CHILD HEALTH CARE (2023)

Article Psychology, Developmental

Validation of the COVID-19 Exposure and Family Impact Scales

Paul T. Enlow, Thao-Ly T. Phan, Amanda M. Lewis, Aimee K. Hildenbrand, Erica Sood, Kimberly S. Canter, Gaby Vega, Melissa A. Alderfer, Anne E. Kazak

Summary: The study found that CEFIS is a psychometrically sound measure of the impact of the COVID-19 pandemic on family and caregiver functioning, and may be useful in identifying families in need of psychological supports.

JOURNAL OF PEDIATRIC PSYCHOLOGY (2022)

Review Obstetrics & Gynecology

Opportunities to enhance parental well-being during prenatal counseling for congenital heart disease

Theresa A. Tacy, Nadine A. Kasparian, Ruchika Karnik, Miwa Geiger, Erica Sood

Summary: Prenatal diagnosis of congenital heart disease can have a significant impact on expectant parents, leading to psychological distress and the need to make high-stakes medical decisions. Training for physicians in this area varies, and there is a need for improved guidance and support for both parents and physicians.

SEMINARS IN PERINATOLOGY (2022)

Article Psychology, Developmental

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults

Lisa A. Schwartz, Amanda M. Lewis, Melissa A. Alderfer, Gabriela Vega, Lamia P. Barakat, Sara King-Dowling, Alexandra M. Psihogios, Kimberly S. Canter, Lori Crosby, Kamyar Arasteh, Paul Enlow, Aimee K. Hildenbrand, Nancy Kassam-Adams, Ahna Pai, Thao-Ly Phan, Julia Price, Corinna L. Schultz, Erica Sood, Jordan Wood, Anne Kazak

Summary: This study aimed to understand the impact of the COVID-19 pandemic on adolescents and young adults and developed the CEFIS-AYA scale specifically for this population. The results showed that the pandemic had a slightly negative impact on AYAs, with various factors contributing to their exposure and the resulting impact, and there were differences in scores based on gender and age.

JOURNAL OF PEDIATRIC PSYCHOLOGY (2022)

Review Psychology, Clinical

Establishing a Valid, Reliable, and Efficient Chart Review Process for Research in Pediatric Integrated Primary Care Psychology

Danielle R. Hatchimonji, Jennie David, Carmelita Foster, Franssy Zablah, Alexandra Cross-Knorr, Erica Sood, Meghan Lines, Cheyenne Hughes-Reid

Summary: Retrospective chart review is a commonly used research method in medical fields but is underutilized in behavioral health. The field of pediatric integrated primary care (IPC) would benefit from guidelines for conducting a methodologically sound chart review study. This article provides strategies for optimizing reliability, validity, and efficiency based on experiences in a pediatric IPC research project, aiming to guide researchers in conducting chart review studies in this specific setting.

JOURNAL OF CLINICAL PSYCHOLOGY IN MEDICAL SETTINGS (2022)

Article Cardiac & Cardiovascular Systems

Prevalence and associated factors of post-traumatic stress disorder in parents whose infants have single ventricle heart disease

Jessica Bainton, Felicia Trachtenberg, Brian W. McCrindle, Ke Wang, Richard Boruta, Cheryl L. Brosig, D'Andrea Egerson, Erica Sood, Johanna Calderon, Tammy Doman, Katrina Golub, Amanda Graham, Karen Haas, Michelle Hamstra, Bergen Lindauer, Donna Sylvester, Frances Woodard, Lisa Young-Borkowski, Kathleen A. Mussatto

Summary: This study aimed to determine the prevalence and factors associated with post-traumatic stress disorder symptoms in parents of infants with single ventricle heart disease who underwent staged palliation. The results showed that 50% of mothers and 39% of fathers had probable post-traumatic stress disorder symptoms after the Norwood surgery, with a decrease to 27% of mothers and 24% of fathers at the final follow-up. Intrusive and hyperarousal symptoms were particularly elevated, and higher levels of anxiety, reduced coping, and decreased satisfaction with parenting were significantly associated with post-traumatic stress disorder symptoms.

CARDIOLOGY IN THE YOUNG (2023)

Article Surgery

Reduced incidence of cardiac rejection in multi-organ transplants: A propensity matched study

Jonathan B. Edelson, Xuemei Zhang, Andrew B. Goldstone, Joseph W. Rossano, Matthew J. O'Connor, J. William Gaynor, Jonathan J. Edwards, Carol Wittlieb-Weber, Katsuhide Maeda

Summary: Rejection remains a primary cause of graft loss after heart transplant. Combining heart transplant with kidney or liver transplant reduces the risk of rejection compared to isolated heart transplant.

CLINICAL TRANSPLANTATION (2023)

Article Critical Care Medicine

A Psychosocial Care Model for Families Affected by Congenital Heart Disease

Colleen F. B. Driscoll, Jennifer Christofferson, Linda G. McWhorter, Abigail C. Demianczyk, Cheryl L. Brosig, Emily A. Jackson, Colette Gramszlo, Sinai C. Zyblewski, Anne E. Kazak, Erica Sood

Summary: This study developed a model of family-based psychosocial care for congenital heart disease (CHD) based on qualitative research with 100 parents of young children with CHD. Three pillars of family-based psychosocial care were identified, with corresponding subthemes of intervention strategies. Most parents expressed the need for intervention strategies across multiple pillars. Parents' preferences for psychosocial support changed with changes in their child's medical status and care settings.

PEDIATRIC CRITICAL CARE MEDICINE (2023)

Article Medicine, Research & Experimental

uConsent: Addressing the gap in measuring understanding of informed consent in clinical research

Richard F. Ittenbach, J. William Gaynor, Jenny M. Dorich, Nancy B. Burnham, Guixia Huang, Madisen T. Harvey, Jeremy J. Corsmo

Summary: The purpose of this study was to establish a new measure of understanding of informed consent for use in clinical research. A total of 109 teens/young adults completed the consenting process of a hypothetical biobanking study. The final uConsent scale consisted of 19 items that mapped directly onto the Basic Elements of Informed Consent. The scale showed good reliability and validity.

CTS-CLINICAL AND TRANSLATIONAL SCIENCE (2023)

Article Cardiac & Cardiovascular Systems

Experiences of fetal care, social support, and emotional functioning during the COVID-19 pandemic in women carrying a fetus with CHD

Priya Nigam, Colette Gramszlo, Shubhika Srivastava, Erica Sood

Summary: This study explores the impact of the COVID-19 pandemic on fetal care, social support, and emotional functioning for women carrying a fetus with CHD. The findings indicate that while women had consistent access to fetal care during the pandemic, they experienced negative impacts such as limited family support, restricted social support, and loss of pregnancy traditions. Many women felt isolated and had worries and fears about COVID-19. However, they also noted feeling supported by their healthcare team and recommended partner/family support during appointments and connection to peer-to-peer support as mitigating factors.

CARDIOLOGY IN THE YOUNG (2023)

Article Genetics & Heredity

Patent ductus arteriosus and coarctation of the aorta in association with PRDM6 variants

Helen M. Stanley, Brian R. White, Christopher J. LaRosa, Mark W. Cocalis, J. William Gaynor, Alanna Strong, Balram Gangaram

Summary: Pathogenic variants in PRDM6 have been found to be etiologically associated with non-syndromic PDA. We present three patients with PDA and CoA found to harbor PRDM6 variants, including a novel, likely-pathogenic variant.

AMERICAN JOURNAL OF MEDICAL GENETICS PART A (2023)

Article Biochemistry & Molecular Biology

Diffuse Optical Monitoring of Cerebral Hemodynamics and Oxygen Metabolism during and after Cardiopulmonary Bypass: Hematocrit Correction and Neurological Vulnerability

Emilie J. Benson, Danielle I. Aronowitz, Rodrigo M. Forti, Alec Lafontant, Nicolina R. Ranieri, Jonathan P. Starr, Richard W. Melchior, Alistair Lewis, Jharna Jahnavi, Jake Breimann, Bohyun Yun, Gerard H. Laurent, Jennifer M. Lynch, Brian R. White, J. William Gaynor, Daniel J. Licht, Arjun G. Yodh, Todd J. Kilbaugh, Constantine D. Mavroudis, Wesley B. Baker, Tiffany S. Ko

Summary: The effects of cardiopulmonary bypass on cerebral oxygen supply and metabolic demands during neonatal congenital heart surgery are generally unknown. However, a study using swine models found that following the initiation of cardiopulmonary bypass, oxygen extraction fraction increased while cerebral blood flow and oxygen metabolism decreased, and this persisted for up to 8 hours after cardiopulmonary bypass.

METABOLITES (2023)

Article Genetics & Heredity

Evaluating the Utility of a New Pathogenicity Predictor for Pediatric Cardiomyopathy

Alyssa L. Rippert, Sarah Trackman, Danielle Burstein, J. William Gaynor, Heather Griffis, Christine Seymour, Rebecca Ahrens-Nicklas

Summary: This study aimed to assess the association between CB scores and clinical outcomes in pediatric CM patients. The results showed no significant association between CB scores and clinical outcomes in pediatric CM patients. The study highlights the deficits in variant interpretation for pediatric CM and cautions the use of this tool for stratifying clinical outcomes in the pediatric population.

HUMAN MUTATION (2023)

Article Health Care Sciences & Services

Partnering With Stakeholders to Inform the Co-Design of a Psychosocial Intervention for Prenatally Diagnosed Congenital Heart Disease

Erica Sood, Colette Gramszlo, Alejandra Perez Ramirez, Katherine Braley, Samantha C. Butler, Jo Ann Davis, Allison A. Divanovic, Lindsay A. Edwards, Nadine Kasparian, Sarah L. Kelly, Trent Neely, Cynthia M. Ortinau, Erin Riegel, Amanda J. Shillingford, Anne E. Kazak

Summary: Input from diverse stakeholders is critical in designing healthcare interventions. This study applied a mixed-methods approach and engaged stakeholders to co-design a psychosocial intervention for parents expecting a baby with congenital heart disease, aiming to promote family wellbeing. This approach could be used in the development of healthcare interventions across chronic diseases.

JOURNAL OF PATIENT EXPERIENCE (2022)

暂无数据