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CE Workshop 06: The Cumulative Burden of Congenital Heart Disease Across the Lifespan: Implications for Neuropsychologists in Pediatrics Through Geriatrics
- Adam R. Cassidy, Jacqueline H. Sanz, Kelly R. Wolfe
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- Journal:
- Journal of the International Neuropsychological Society / Volume 29 / Issue s1 / November 2023
- Published online by Cambridge University Press:
- 21 December 2023, pp. 3-4
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The heart and the brain are inextricably linked across development by overlapping genetic programs and transacting physiologies that exist long before birth and endure throughout the lifespan. Congenital heart disease (CHD) refers to a diverse array of conditions in which structural heart development is atypical. Of the roughly 1 million babies born with CHD each year, some 40,000 are born with a “critical” form of CHD that will require intensive surgical intervention within the first year of life. As recently as the 1980s, children born with some forms of critical CHD did not survive; palliation was their only option. This has changed dramatically over the past 30-40 years. Driven by momentous breakthroughs in medical science and technology, approximately 80-95% of children born with CHD today will reach adulthood.
But increased survival is only a part of the CHD story. Indeed, like extreme prematurity, leukemia, and many other previously fatal medical conditions with which neuropsychologists are familiar, increases in longevity among CHD survivors have come with increasing recognition of the many challenging transitions and cumulative medical, neurobehavioral, and psychosocial burdens inherent to “living with CHD.” CHD begins to alter expected brain development in utero with evidence of structural, volumetric, and metabolic differences documented as early as the second or third prenatal trimester. Brain dysmaturation, in turn, increases one’s risk for further acquired brain injury and gives rise to a range of neurobehavioral deficits and psychosocial difficulties that consistently rank among the most salient threats to quality of life among children, adolescents, and adults with CHD.
More recently, as survival into adulthood has become increasingly common for individuals with CHD, we have also begun to more fully appreciate the cascading impact and cumulative neuropsychological burden of CHD across the lifespan, which impact a range of long-term outcomes such as educational and occupational attainment, living independently, and risk for dementia.
In short, CHD can no longer reasonably be considered a child or pediatric condition, but rather a lifespan condition with the potential to adversely impact neurobehavioral and psychosocial outcomes in different ways and at different times across infancy, childhood, adolescence, and adulthood. Over a series of talks presented by a panel of recognized neuropsychologists and experts in CHD, this symposium aims to review the neuropsychology of CHD across the lifespan and to present an integrative lifespan developmental neuropsychological model of CHD that eschews prevailing “child” vs. “adult” distinctions. Each presentation will address a salient developmental epoch (prenatal-early childhood, school-age/adolescence, and adulthood/geriatric timeframes) and will include a comprehensive review of the extant literature pertaining to relevant neuroanatomical and neurodevelopmental/neuropsychological considerations for individuals with CHD during each epoch. Transitions, of which there are myriad for individuals living with CHD (e.g., from acute inpatient care to stepdown unit care; from inpatient to outpatient settings; from early intervention to the school system; from childhood to adolescence; from adolescence to young adulthood; from pediatric to adult CHD care), will feature prominently throughout the symposium, as will recommendations for competent, developmentally-informed clinical neuropsychological management and intervention planning throughout the lifespan. Upon conclusion of this course, learners will be able to:
1. Describe the mechanisms by which congenital heart disease (CHD) impacts brain development and functioning across the lifespan (from infancy to older adulthood).
2. Discuss neurodevelopmental/neuropsychological sequelae of CHD for children, adolescents, and adults.
3. Explain the role of clinical neuropsychologists in evaluating, supporting, and optimizing the neuropsychological trajectories of individuals with CHD across the lifespan.
Implementation of the Cardiac Inpatient Neurodevelopmental Care Optimization (CINCO) programme: an interdisciplinary, generalisable approach to inpatient neurodevelopmental care
- Kelly R. Wolfe, Sherrill D. Caprarola, Caelah Clark, Jesse Davidson, Melanie D. Everitt, Laura Faul, Colton Hageman, Sarah L. Kelly, Emily Maloney, Hilary Patteson, Sarah Scott, Alyse Talbot, Suhong Tong, Kimberly L. DiMaria
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- Journal:
- Cardiology in the Young / Volume 33 / Issue 12 / December 2023
- Published online by Cambridge University Press:
- 12 April 2023, pp. 2581-2588
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Background:
Children with CHD are at risk for neurodevelopmental delays, and length of hospitalisation is a predictor of poorer long-term outcomes. Multiple aspects of hospitalisation impact neurodevelopment, including sleep interruptions, limited holding, and reduced developmental stimulation. We aimed to address modifiable factors by creating and implementing an interdisciplinary inpatient neurodevelopmental care programme in our Heart Institute.
Methods:In this quality improvement study, we developed an empirically supported approach to neurodevelopmental care across the continuum of hospitalisation for patients with CHD using three plan-do-study-act cycles. With input from multi-level stakeholders including parents/caregivers, we co-designed interventions that comprised the Cardiac Inpatient Neurodevelopmental Care Optimization (CINCO) programme. These included medical/nursing orders for developmental care practices, developmental kits for patients, bedside developmental plans, caregiver education and support, developmental care rounds, and a specialised volunteer programme. We obtained data from the electronic health record for patients aged 0–2 years admitted for at least 7 days to track implementation.
Results:There were 619 admissions in 18 months. Utilisation of CINCO interventions increased over time, particularly for the medical/nursing orders and caregiver handouts. The volunteer programme launch was delayed but grew rapidly and within six months, provided over 500 hours of developmental interaction with patients.
Conclusions:We created and implemented a low-cost programme that systematised and expanded upon existing neurodevelopmental care practices in the cardiac inpatient units. Feasibility was demonstrated through increasing implementation rates over time. Key takeaways include the importance of multi-level stakeholder buy-in and embedding processes in existing clinical workflows.
Telehealth services for cardiac neurodevelopmental care during the COVID-19 pandemic: a site survey from the Cardiac Neurodevelopmental Outcome Collaborative
- Nadine A. Kasparian, Anjali Sadhwani, Renee Sananes, Elizabeth Blumenfeld, Jennifer L. Butcher, Adam R. Cassidy, Stephany M. Cox, Joslyn Kenowitz, Thomas A. Miller, Jacqueline H. Sanz, Kelly R. Wolfe, Dawn Ilardi
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- Journal:
- Cardiology in the Young / Volume 33 / Issue 2 / February 2023
- Published online by Cambridge University Press:
- 24 February 2022, pp. 280-287
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Objective:
COVID-19 has markedly impacted the provision of neurodevelopmental care. In response, the Cardiac Neurodevelopmental Outcome Collaborative established a Task Force to assess the telehealth practices of cardiac neurodevelopmental programmes during COVID-19, including adaptation of services, test protocols and interventions, and perceived obstacles, disparities, successes, and training needs.
Study Design:A 47-item online survey was sent to 42 Cardiac Neurodevelopmental Outcome Collaborative member sites across North America within a 3-week timeframe (22 July to 11 August 2020) to collect cross-sectional data on practices.
Results:Of the 30 participating sites (71.4% response rate), all were providing at least some clinical services at the time of the survey and 24 sites (80%) reported using telehealth. All but one of these sites were offering new telehealth services in response to COVID-19, with the most striking change being the capacity to offer new intervention services for children and their caregivers. Only a third of sites were able to carry out standardised, performance-based, neurodevelopmental testing with children and adolescents using telehealth, and none had completed comparable testing with infants and toddlers. Barriers associated with language, child ability, and access to technology were identified as contributing to disparities in telehealth access.
Conclusions:Telehealth has enabled continuation of at least some cardiac neurodevelopmental services during COVID-19, despite the challenges experienced by providers, children, families, and health systems. The Cardiac Neurodevelopmental Outcome Collaborative provides a unique platform for sharing challenges and successes across sites, as we continue to shape an evidence-based, efficient, and consistent approach to the care of individuals with CHD.
Prefrontal cortical thinning links to negative symptoms in schizophrenia via the ENIGMA consortium
- E. Walton, D. P. Hibar, T. G. M. van Erp, S. G. Potkin, R. Roiz-Santiañez, B. Crespo-Facorro, P. Suarez-Pinilla, N. E. M. van Haren, S. M. C. de Zwarte, R. S. Kahn, W. Cahn, N. T. Doan, K. N. Jørgensen, T. P. Gurholt, I. Agartz, O. A. Andreassen, L. T. Westlye, I. Melle, A. O. Berg, L. Morch-Johnsen, A. Færden, L. Flyckt, H. Fatouros-Bergman, Karolinska Schizophrenia Project Consortium (KaSP), E. G. Jönsson, R. Hashimoto, H. Yamamori, M. Fukunaga, N. Jahanshad, P. De Rossi, F. Piras, N. Banaj, G. Spalletta, R. E. Gur, R. C. Gur, D. H. Wolf, T. D. Satterthwaite, L. M. Beard, I. E. Sommer, S. Koops, O. Gruber, A. Richter, B. Krämer, S. Kelly, G. Donohoe, C. McDonald, D. M. Cannon, A. Corvin, M. Gill, A. Di Giorgio, A. Bertolino, S. Lawrie, T. Nickson, H. C. Whalley, E. Neilson, V. D. Calhoun, P. M. Thompson, J. A. Turner, S. Ehrlich
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- Journal:
- Psychological Medicine / Volume 48 / Issue 1 / January 2018
- Published online by Cambridge University Press:
- 26 May 2017, pp. 82-94
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Background
Our understanding of the complex relationship between schizophrenia symptomatology and etiological factors can be improved by studying brain-based correlates of schizophrenia. Research showed that impairments in value processing and executive functioning, which have been associated with prefrontal brain areas [particularly the medial orbitofrontal cortex (MOFC)], are linked to negative symptoms. Here we tested the hypothesis that MOFC thickness is associated with negative symptom severity.
MethodsThis study included 1985 individuals with schizophrenia from 17 research groups around the world contributing to the ENIGMA Schizophrenia Working Group. Cortical thickness values were obtained from T1-weighted structural brain scans using FreeSurfer. A meta-analysis across sites was conducted over effect sizes from a model predicting cortical thickness by negative symptom score (harmonized Scale for the Assessment of Negative Symptoms or Positive and Negative Syndrome Scale scores).
ResultsMeta-analytical results showed that left, but not right, MOFC thickness was significantly associated with negative symptom severity (βstd = −0.075; p = 0.019) after accounting for age, gender, and site. This effect remained significant (p = 0.036) in a model including overall illness severity. Covarying for duration of illness, age of onset, antipsychotic medication or handedness weakened the association of negative symptoms with left MOFC thickness. As part of a secondary analysis including 10 other prefrontal regions further associations in the left lateral orbitofrontal gyrus and pars opercularis emerged.
ConclusionsUsing an unusually large cohort and a meta-analytical approach, our findings point towards a link between prefrontal thinning and negative symptom severity in schizophrenia. This finding provides further insight into the relationship between structural brain abnormalities and negative symptoms in schizophrenia.
Contributors
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- By Robert C. Basner, Carl Bazil, Lee J. Brooks, Sean M. Caples, Kelly A. Carden, Ronald D. Chervin, Christopher Cielo, David G. Davila, Katherine A. Dudley, Judy Fetterolf, W. Ward Flemons, Neil Freedman, Christian Guilleminault, Fauziya Hassan, Shelley Hershner, David M. Hiestand, Mithri Junna, Kristen Kelly-Pieper, Douglas Kirsch, Brian B. Koo, Carin Lamm, Raman Malhotra, Meghna P. Mansukhani, Carole L. Marcus, B. Marshall, Jean K. Matheson, Timothy I. Morgenthaler, Gökhan M. Mutlu, Irina Ok, Vidya Pai, Winnie C. Pao, Sairam Parthasarathy, Shalini Paruthi, Nimesh Patel, Sachin R. Pendharkar, Ravi K. Persaud, Bharati Prasad, Stuart F. Quan, Satish C. Rao, Patti Reed, Alcibiades Rodriguez, Dennis Rosen, Vijay Seelall, Anita Valanju Shelgikar, Jeffrey J. Stanley, Kingman Strohl, Shannon S. Sullivan, Kevin A. Thomas, Robert Thomas, John R. Wheatley, Lisa Wolfe, Peter J.-C. Wu, Motoo Yamauchi
- Edited by Robert C. Basner
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- Book:
- Case Studies in Polysomnography Interpretation
- Published online:
- 05 August 2015
- Print publication:
- 18 October 2012, pp x-xii
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