63 results on '"Nancy A. Pike"'
Search Results
2. Health-Related Quality of Life in Adolescent and Young Adult Retinoblastoma Survivors
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Paula J. Belson, Jo-Ann Eastwood, Mary-Lynn Brecht, Jonathan W. Kim, Ron D. Hays, and Nancy A. Pike
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Young Adult ,Cross-Sectional Studies ,Adolescent ,Child, Preschool ,Retinal Neoplasms ,Research ,Retinoblastoma ,Quality of Life ,Humans ,Survivors - Abstract
Background: Retinoblastoma (RB) is a malignant intraocular tumor diagnosed in early childhood that requires extensive medical and surgical treatment at a young age. Health-related quality of life (HRQOL) is thought to be diminished due to visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, few studies have identified variables associated with HRQOL among those with RB. Purpose: To compare HRQOL of adolescents and young adults (AYAs) with RB to matched controls and to identify predictors of HRQOL in RB survivors. Methods: Using a cross-sectional design, 198 AYAs (101 RBs and 97 controls) completed HRQOL (PROMIS®-29 profile) and psychosocial questionnaires (Rosenberg self-esteem scale, multidimensional scale of perceived social support, and Hollingshead index for socioeconomic status). Clinical variables (age at diagnosis, visual acuity, laterality, heredity, treatment regime, and anesthesia exposure) were extracted from the medical record. Correlates of HRQOL were estimated using linear regression models. Results: RB survivors reported similar HRQOL compared to controls. Physical function ( p
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- 2023
3. Vision-related quality of life compared to generic measures in retinoblastoma survivors
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Paula J. Belson, Nancy A. Pike, Jo-Ann Eastwood, Mary-Lynn Brecht, Jesse L. Berry, and Ron D. Hays
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Adolescent ,Pediatric Cancer ,Retinal Neoplasms ,PROMIS (R)-29 Profile ,Young Adult ,NIH Toolbox® VRQOL ,Clinical Research ,Surveys and Questionnaires ,Vision-Related Quality of Life ,NIH Toolbox (R) VRQOL ,Humans ,Psychology ,Survivors ,Cancer ,Pediatric ,Rehabilitation ,Public Health, Environmental and Occupational Health ,Retinoblastoma ,Reproducibility of Results ,PROMIS®-29 Profile ,Health Services ,Cross-Sectional Studies ,Good Health and Well Being ,Health-Related Quality of Life ,Quality of Life ,Public Health and Health Services ,Health Policy & Services ,Mind and Body - Abstract
Purpose To (1) Compare vision-related quality of life (VRQOL) in adolescent and young adult (AYA) unilateral versus bilateral retinoblastoma (RB) survivors using a vision-targeted measure and a generic health-related quality of life (HRQOL) measure and (2) Assess associations among VRQOL and generic HRQOL domains and overall QOL and estimate associations of the VRQOL and HRQOL domains with overall QOL. Methods The National Institute for Health (NIH) Toolbox® VRQOL instrument, PROMIS®-29 Profile v 2.1, and a single-item QOL measure were administered in a cross-sectional study of 101 RB survivors. Reliability for multi-item scales was estimated. Product-moment and Spearman rank correlation coefficients and stepwise ordinary least squares were used to measure associations of other variables with overall QOL. Results Significantly worse VRQOL was reported by bilateral than unilateral RB survivors. Cronbach’s alpha coefficients for all VRQOL scales ranged from 0.83 to 0.95. Medium to large correlations were found between all NIH Toolbox® VRQOL scales and the PROMIS®-29 measures. Depression and ability to participate in social roles and activities from the PROMIS®-29 Profile accounted for 38% of the variance in overall QOL with the psychosocial domain of the NIH Toolbox® VRQOL explaining 16% of the variance. Conclusion VRQOL is impaired in bilateral RB survivors. VRQOL is associated substantially with the PROMIS-29 generic HRQOL measure but has significant unique associations with overall QOL. The NIH Toolbox® VRQOL measure provides important information about the vision-related effects on daily life of AYA RB survivors.
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- 2023
4. Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic
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Flerida, Imperial-Perez, Nancy A, Pike, Lynn V, Doering, Jo-Ann, Eastwood, and MarySue V, Heilemann
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Treatment Outcome ,Hypoplastic Left Heart Syndrome ,Pediatrics, Perinatology and Child Health ,COVID-19 ,Humans ,Infant ,Surgery ,General Medicine ,Cardiology and Cardiovascular Medicine ,Home Care Services ,Pandemics - Abstract
Background: Infants born with single ventricle heart disease require in-home medicalized care during the interstage period (time between the first and second staged heart surgery). These caregivers rely on extended family, friends, and hired caretakers to provide respite time. However, the coronavirus pandemic removed these families’ options due to stay-at-home and social distancing directives. We explored the caregivers’ experiences during the interstage period, including impacts on their lifestyle, as they managed their infants’ critical needs during the coronavirus disease 2019 pandemic. Method: In-person or telephonic interviews of 14 caregivers interviewed once or twice were conducted between November 2019 and July 2020. Constructivist Grounded Theory methodology guided both data collection and analysis for the inductive and abductive exploration of caregivers’ experiences. Results: Data analysis led to the development of 2 concepts: Accepting and adapting to a restrictive home environment and Reconciling what is and what is yet to come. Refinement of the relationship between the 2 concepts led to the development of a theory grounded in the words and experiences of the participants called: A Continuous Process of Compromise. Conclusions: Our findings increase understanding of caregivers’ experiences related to psychosocial and lifestyle impacts and the need for additional support during the interstage period.
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- 2022
5. Mixed methods evaluation of an oral health education program for pediatric dental, medical and nursing providers
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Francisco Ramos Gomez, Janni J. Kinsler, Laurie Love‐Bibbero, Cambria Garell, Yan Wang, and Nancy A. Pike
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General Medicine - Published
- 2023
6. Improved oral health knowledge in a primary care pediatric nurse practitioner program
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Nancy A. Pike, Janni J. Kinsler, Jennifer K. Peterson, Inese Verzemnieks, Lauren Lauridsen, Laurie Love-Bibbero, and Francisco Ramos-Gomez
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General Medicine ,General Nursing - Published
- 2022
7. Perioperative Considerations for Pediatric Patients With Congenital Heart Disease Presenting for Noncardiac Procedures: A Scientific Statement From the American Heart Association
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Viviane G, Nasr, Larry W, Markham, Mark, Clay, James A, DiNardo, David, Faraoni, Danielle, Gottlieb-Sen, Wanda C, Miller-Hance, Nancy A, Pike, and Chloe, Rotman
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Continuous advances in pediatric cardiology, surgery, and critical care have significantly improved survival rates for children and adults with congenital heart disease. Paradoxically, the resulting increase in longevity has expanded the prevalence of both repaired and unrepaired congenital heart disease and has escalated the need for diagnostic and interventional procedures. Because of this expansion in prevalence, anesthesiologists, pediatricians, and other health care professionals increasingly encounter patients with congenital heart disease or other pediatric cardiac diseases who are presenting for surgical treatment of unrelated, noncardiac disease. Patients with congenital heart disease are at high risk for mortality, complications, and reoperation after noncardiac procedures. Rigorous study of risk factors and outcomes has identified subsets of patients with minor, major, and severe congenital heart disease who may have higher-than-baseline risk when undergoing noncardiac procedures, and this has led to the development of risk prediction scores specific to this population. This scientific statement reviews contemporary data on risk from noncardiac procedures, focusing on pediatric patients with congenital heart disease and describing current knowledge on the subject. This scientific statement also addresses preoperative evaluation and testing, perioperative considerations, and postoperative care in this unique patient population and highlights relevant aspects of the pathophysiology of selected conditions that can influence perioperative care and patient management.
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- 2022
8. Five-year follow-up of an interdisciplinary oral health education program: Clinical practice behaviors in working pediatric nurse practitioners
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Nancy A. Pike, Laurie Love-Bibbero, Janni J. Kinsler, Inese Verzemnieks, and Francisco Ramos-Gomez
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General Medicine ,General Nursing - Published
- 2022
9. Development of an electronic medical record provider evaluation template for children with attention deficit hyperactivity disorder
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Kamala, Gipson-McElroy and Nancy A, Pike
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Attention deficit hyperactivity disorder (ADHD) is the most common neurobehavioral condition in children. Current guidelines recommend that Diagnostic and Statistical Manual of Mental Disorders Fifth Edition (DSM-V) criteria be met before diagnosing ADHD. However, 14-49% of providers are not documenting the use of DSM-V criteria in screening and diagnosis. The use of a standardized electronic health record (EHR) ADHD template is a potential option to assist providers with documenting the DSM-V criteria. The aim for this project was to provide a 1-hour educational in-service on the use of the DSM-V criteria, Vanderbilt rating scale, and a revised EHR ADHD template, and to assess provider use pre and post intervention. Results showed that few providers (n = 1; 2%) document using DSM-V criteria preintervention and post intervention with only a modest increase in template use (n = 3; 5%). However, there were statistical differences between provider type with advanced practice registered nurses and physician assistants screening more frequently using the EHR DSM-V ADHD template compared with physicians (p = .009). Future studies are needed to evaluate barriers to use, including practice preference, openness to change, and other factors that may affect provider workflow.
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- 2022
10. Developing a sense of self-reliance: caregivers of infants with single-ventricle heart disease during the interstage period
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MarySue V. Heilemann, Nancy A. Pike, Jo-Ann Eastwood, Flerida Imperial-Perez, and Lynn V. Doering
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Heart Defects, Congenital ,Parents ,Heart disease ,media_common.quotation_subject ,Psychology of self ,030204 cardiovascular system & hematology ,Symbolic interactionism ,Univentricular Heart ,Grounded theory ,03 medical and health sciences ,0302 clinical medicine ,Constructivist grounded theory ,Nursing ,Perception ,Hypoplastic Left Heart Syndrome ,medicine ,Humans ,media_common ,030504 nursing ,business.industry ,Palliative Care ,Infant ,General Medicine ,medicine.disease ,Caregivers ,Pediatrics, Perinatology and Child Health ,Female ,0305 other medical science ,Cardiology and Cardiovascular Medicine ,business ,Period (music) ,Qualitative research - Abstract
Background:Caring for infants after the first-stage palliative surgery for single-ventricle heart disease bring challenges beyond the usual parenting responsibilities. Current studies fail to capture the nuances of caregivers’ experiences during the most critical “interstage” period between the first and second surgery.Objectives:To explore the perceptions of caregivers about their experiences while transitioning to caregiver roles, including the successes and challenges associated with caregiving during the interstage period.Methods:Constructivist Grounded Theory methodology guided the collection and analysis of data from in person or telephonic interviews with caregivers after their infants underwent the first-stage palliative surgery for single-ventricle heart disease, and were sent to home for 2–4 months before returning for their second surgery. Symbolic interactionism informed data analyses and interpretation.Results:Our sample included 14 parents, who were interviewed 1–2 times between November, 2019 and July, 2020. Most patients were mothers (71%), Latinx (64%), with household incomes Conclusions:Parents transitioned to caregiver roles by developing a sense of self-reliance and, in the process, gained self-confidence and decision-making skills. Our study responded to the key research priority from the AHA Scientific Statement to address the knowledge gap in home monitoring for interstage infants through qualitative research design.
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- 2021
11. Caudate nuclei volume alterations and cognition and mood dysfunctions in adolescents with single ventricle heart disease
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Rajesh Kumar, Mary A. Woo, Cristina Cabrera-Mino, Nancy Halnon, Bhaswati Roy, Nancy A. Pike, Alan B. Lewis, Sarah Noorani, and Ashish Sahib
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Male ,0301 basic medicine ,medicine.medical_specialty ,Adolescent ,Heart disease ,Beck Anxiety Inventory ,Article ,03 medical and health sciences ,Cellular and Molecular Neuroscience ,0302 clinical medicine ,Internal medicine ,Basal ganglia ,Ventricular Dysfunction ,medicine ,Humans ,Cognitive Dysfunction ,medicine.diagnostic_test ,Mood Disorders ,business.industry ,Montreal Cognitive Assessment ,Cognition ,Magnetic resonance imaging ,Organ Size ,Mental Status and Dementia Tests ,medicine.disease ,030104 developmental biology ,Mood ,Adolescent Behavior ,Cardiology ,Anxiety ,Female ,Caudate Nucleus ,medicine.symptom ,business ,030217 neurology & neurosurgery - Abstract
Adolescents with single ventricle heart disease (SVHD) exhibit mood and cognitive deficits, which may result from injury to the basal ganglia structures, including the caudate nuclei. However, the integrity of the caudate in SVHD adolescents is unclear. Our aim was to examine the global and regional caudate volumes, and evaluate the relationships between caudate volumes and cognitive and mood scores in SVHD and healthy adolescents. We acquired two high-resolution T1-weighted images from 23 SVHD and 37 controls using a 3.0-Tesla MRI scanner, as well as assessed mood (Patient Health Questionnaire-9 [PHQ-9]; Beck Anxiety Inventory [BAI]) and cognition (Montreal Cognitive Assessment [MoCA]; Wide Range Assessment of Memory and Learning–2; General Memory Index [GMI]) functions. Both left and right caudate nuclei were outlined, which were then used to calculate and compare volumes between groups using ANCOVA (covariates: age, gender, and head-size), as well as perform 3D surface morphometry. Partial correlations (covariates: age, gender, and head-size) were used to examine associations between caudate volumes, cognition, and mood scores in SVHD and controls. SVHD subjects showed significantly higher PHQ-9 and BAI scores, indicating more depressive and anxiety symptoms, as well as reduced GMI scores, suggesting impaired cognition, compared to controls. SVHD patients showed significantly reduced caudate volumes (left, 3,198.8 ± 490.1 vs. 3,605.0 ± 480.4 mm(3), p < 0.004; right, 3,162.1 ± 475.4 vs. 3,504.8 ± 465.9 mm(3), p < 0.011) over controls, and changes were localized in the rostral, mid-dorsolateral, and caudal areas. Significant negative correlations emerged between caudate volumes with PHQ-9 and BAI scores and positive correlations with GMI and MoCA scores in SVHD and controls. SVHD adolescents show significantly reduced caudate volumes, especially in sites that have projections to regulate mood and cognition, which may result from developmental and/or hypoxia-/ischemia-induced processes.
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- 2020
12. Improved oral health knowledge in a primary care pediatric nurse practitioner program
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Nancy A, Pike, Janni J, Kinsler, Jennifer K, Peterson, Inese, Verzemnieks, Lauren, Lauridsen, Laurie, Love-Bibbero, and Francisco, Ramos-Gomez
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Primary Health Care ,Child, Preschool ,Pediatric Nurse Practitioners ,COVID-19 ,Humans ,Oral Health ,Curriculum ,Child - Abstract
Pediatric nurse practitioners (PNPs) are a significant workforce in primary care and are uniquely positioned to improve oral health in children through ongoing surveillance in the well-child visit. The purpose of this study was to evaluate PNP student satisfaction and knowledge gained with the integration of the Strategic Partnership for Interprofessional Collaborative Education in Pediatric Dentistry (SPICE-PD) oral health education program into the first-year primary care curriculum. A descriptive, comparative design examined dental test scores across the pre-SPICE-PD (2013-2014; n = 26) and post-SPICE-PD (2015-2020; n = 55) cohorts. An electronic survey was completed (n = 47; 67%), and focus group (n = 12) audio-recordings were analyzed using Atlas.ti 8.0. Chi-square test and independent samples t-test were used to assess differences between groups. The SPICE-PD students reported improved knowledge and skill in clinical practice. Focus group themes were oral health education was beneficial, impact of coronavirus disease 2019, and suggestions for improvement. Mean dental test scores improved pre- and post-SPICE-PD (83 vs. 93; p.001). The SPICE-PD oral health education improved knowledge and was highly satisfying for students. Pediatric nurse practitioners are ideally positioned to integrate oral health into primary care services, thereby improving access to care and ultimately reducing or mitigating early childhood caries. Evaluation of PNP postgraduation practices in the primary care setting is needed to assess whether improved knowledge results in practice change.
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- 2021
13. Reduced brain mammillary body volumes and memory deficits in adolescents who have undergone the Fontan procedure
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Sadhana Singh, Rajesh Kumar, Mary A. Woo, Bhaswati Roy, Nancy Halnon, Nancy A. Pike, Stefanie Moye, Alan B. Lewis, and Cristina Cabrera-Mino
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Male ,Mammillary Bodies ,medicine.medical_treatment ,Neuropsychological Tests ,030204 cardiovascular system & hematology ,Fontan Procedure ,Univentricular Heart ,Pediatrics ,Cognition ,0302 clinical medicine ,2.1 Biological and endogenous factors ,Aetiology ,Pediatric ,medicine.diagnostic_test ,Montreal Cognitive Assessment ,Magnetic Resonance Imaging ,Mental Health ,Treatment Outcome ,Predictive value of tests ,Neurological ,Brain size ,Public Health and Health Services ,Cardiology ,Female ,medicine.medical_specialty ,Adolescent ,Mammillary body ,Article ,Paediatrics and Reproductive Medicine ,Fontan procedure ,03 medical and health sciences ,Predictive Value of Tests ,Memory ,Internal medicine ,Behavioral and Social Science ,Acquired Cognitive Impairment ,medicine ,Humans ,Cognitive Dysfunction ,Memory Disorders ,Recall ,business.industry ,Prevention ,Neurosciences ,Magnetic resonance imaging ,Brain Disorders ,Case-Control Studies ,Pediatrics, Perinatology and Child Health ,business ,030217 neurology & neurosurgery - Abstract
Background: Adolescents with single ventricle heart disease (SVHD), who have undergone the Fontan procedure, show cognitive/memory deficits. Mammillary bodies are key brain sites that regulate memory; however, their integrity in SVHD is unclear. We evaluated mammillary body (MB) volumes and their associations with cognitive/memory scores in SVHD and controls. Methods: Brain MRI data were collected from 63 adolescents (25 SVHD; 38 controls) using a 3.0-Tesla MRI scanner. Cognition and memory were assessed using Montreal Cognitive Assessment (MoCA) and Wide Range Assessment of Memory and Learning 2. MB volumes were calculated and compared between groups (ANCOVA, covariates: age, sex, and total-brain-volume [TBV]). Partial correlations and linear regression were performed to examine associations between volumes and cognitive scores (covariates: age, sex, and TBV). Results: SVHD group showed significantly lower MoCA and WRAML2 scores over controls. MB volumes were significantly reduced in SVHD over controls. After controlling for age, sex, and TBV, MB volumes correlated with MoCA and delayed memory recall scores in SVHD and controls. Conclusion: Adolescents with SVHD show reduced MB volumes associated with cognitive/memory deficits. Potential mechanisms of volume losses may include developmental and/or hypoxic/ischemic-induced processes. Providers should screen for cognitive deficits and explore possible interventions to improve memory.
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- 2019
14. The Bayley-III scale may underestimate neurodevelopmental disability after cardiac surgery in infants
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Hedwig H. Hövels-Gürich, David C. Bellinger, Kim F. Duncan, Robert N. Justo, Andrew B. Goldstone, Joseph Atallah, J. William Gaynor, Anne Synnes, Christian Stopp, Beatrice Latal, Mary T. Donofrio, Andrew M. Atz, David Wypij, Dean B. Andropoulos, William T. Mahle, Nancy S. Ghanayem, Lara S. Shekerdemian, Nancy A. Pike, Patrick S. McQuillen, Shaji C. Menon, Caren S. Goldberg, Jeffrey P. Jacobs, John Beca, Fukiko Ichida, Michael Baiocchi, Jane W. Newburger, Ismee A. Williams, Jennifer S. Li, Christian Pizarro, University of Zurich, and Gaynor, J William
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Pulmonary and Respiratory Medicine ,medicine.medical_specialty ,Pediatrics ,Developmental Disabilities ,610 Medicine & health ,030204 cardiovascular system & hematology ,Bayley Scales of Infant Development ,2705 Cardiology and Cardiovascular Medicine ,03 medical and health sciences ,Child Development ,0302 clinical medicine ,030225 pediatrics ,medicine ,Humans ,Cardiac Surgical Procedures ,Toddler ,Child ,Psychomotor learning ,Cardiopulmonary Bypass ,business.industry ,Infant ,General Medicine ,Odds ratio ,Child development ,Confidence interval ,2746 Surgery ,Cardiac surgery ,10036 Medical Clinic ,2740 Pulmonary and Respiratory Medicine ,Propensity score matching ,Surgery ,Cardiology and Cardiovascular Medicine ,business - Abstract
OBJECTIVES Neurodevelopmental disability is the most common complication among congenital heart surgery survivors. The Bayley scales are standardized instruments to assess neurodevelopment. The most recent edition (Bayley Scales of Infant and Toddler Development 3rd Edition, Bayley-III) yields better-than-expected scores in typically developing and high-risk infants than the second edition (Bayley Scales of Infant Development 2nd Edition, BSID-II). We compared BSID-II and Bayley-III scores in infants undergoing cardiac surgery. METHODS We evaluated 2198 infants who underwent operations with cardiopulmonary bypass between 1996 and 2009 at 26 institutions. We used propensity score matching to limit confounding by indication in a subset of patients (n = 705). RESULTS Overall, unadjusted Bayley-III motor scores were higher than BSID-II Psychomotor Development Index scores (90.7 ± 17.2 vs 77.6 ± 18.8, P CONCLUSIONS The Bayley-III yielded higher scores than the BSID-II and classified fewer children as severely impaired. The systematic bias towards higher scores with the Bayley-III precludes valid comparisons between early and contemporary cardiac surgery cohorts.
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- 2019
15. Abstract 13327: Worse Cerebral Blood Flow in Single Right verses Left Ventricle After Fontan Completion
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Rajesh Kumar, Bhaswati Roy, Nancy A. Pike, Mary A. Woo, Danny J.J. Wang, Alan B. Lewis, and Nancy J Halnon
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medicine.medical_specialty ,Single left ventricle ,Heart disease ,business.industry ,Single right ventricle ,medicine.disease ,medicine.anatomical_structure ,Cerebral blood flow ,Ventricle ,Physiology (medical) ,Internal medicine ,medicine ,Cardiology ,Cardiology and Cardiovascular Medicine ,Cognitive impairment ,business - Abstract
Introduction: Single ventricle heart disease (SVHD) adolescents with a single right ventricle (RV) have worse cognition and mood function compared to single left ventricle (LV) which may result from variability in ventricular function or structure related sequela after Fontan completion. However, it is unclear whether RV SVHD has worse cerebral blood flow (CBF) in cognitive and mood regulatory areas over LV SVHD compared to healthy controls. Methods: Cross-sectional, comparative design, 14 adolescents with RV SVHD (age 16.1±1.5 years; 7 male), 6 LV SVHD (age, 16.3±1.0 years; 4 male), and 25 healthy controls (age, 15.9±1.4 years; 13 male) were studied. SVHD participants were recruited who have undergone surgical palliation with Fontan completion from local pediatric cardiology clinics. Self-reported healthy controls were recruited from the community. Brain MRI studies were performed using a 3.0-Tesla MRI scanner and 3D pseudo-continuous arterial spin labelling data were collected. We calculated whole-brain CBF maps, normalized to a common space, and assessed brain changes between RV and LV SVHD and controls [ANCOVA; covariates, age and sex; p Results: Regional brain CBF was reduced in single RV over LV SVHD. Multiple brain sites showed more widespread reduced CBF values in RV over LV SVHD compared to controls (Figure 1, p Conclusion: Single RV adolescents show more widespread reduced CBF than single LV in cognitive and mood regulatory sites, which may result from variable function or structure related sequela between ventricle types. The findings indicate that the therapeutic approach should recognize the differences in CBF based on ventricle type and investigate interventions to optimize CBF in single RV SVHD.
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- 2020
16. Optimism despite profound uncertainty: school and social relationships in adolescents with single ventricle heart disease
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Ellen Olshansky, Yuqing Guo, Nancy A. Pike, Jennifer K. Peterson, and Lorraine S. Evangelista
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Heart disease ,Adolescent ,Heart Diseases ,media_common.quotation_subject ,Academic achievement ,Disease ,Ableism ,030204 cardiovascular system & hematology ,Article ,03 medical and health sciences ,Social support ,0302 clinical medicine ,Optimism ,030225 pediatrics ,medicine ,Humans ,Interpersonal Relations ,media_common ,Schools ,business.industry ,Uncertainty ,Social Support ,General Medicine ,medicine.disease ,Pediatrics, Perinatology and Child Health ,Cardiology and Cardiovascular Medicine ,business ,Psychosocial ,Clinical psychology ,Qualitative research - Abstract
Background:Survivors of single ventricle heart disease must cope with the physical, neurodevelopmental, and psychosocial sequelae of their cardiac disease, which may also affect academic achievement and social relationships. The purpose of this study was to qualitatively examine the experiences of school and social relationships in adolescents with single ventricle heart disease.Methods:A descriptive phenomenological methodology was employed, utilising semi-structured interviews. Demographic and clinical characteristics were obtained via chart review.Results:Fourteen adolescents (aged 14 to 19 years) with single ventricle heart disease participated. Interviews ranged from 25 to 80 minutes in duration. Four themes emerged from the interviews, including “Don’t assume”: Pervasive ableism; “The elephant in the room”: Uncertain future; “Everyone finds something to pick on”: Bullying at school; “They know what I have been through”: Social support. The overall essence generated from the data was “optimism despite profound uncertainty.”Conclusions:Adolescents with single ventricle heart disease identified physical limitations and school challenges in the face of an uncertain health-related future. Despite physical and psychosocial limitations, most remained optimistic for the future and found activities that were congruent with their abilities. These experiences reflect “optimism despite profound uncertainty.”
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- 2020
17. Author response for 'Reduced hippocampal volumes and memory deficits in adolescents with single ventricle heart disease'
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Nancy A. Pike, Stefanie Moye, Alan B. Lewis, Cristina Cabrera-Mino, Bhaswati Roy, Nancy J Halnon, Rajesh Kumar, and Mary A. Woo
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medicine.medical_specialty ,medicine.anatomical_structure ,Heart disease ,Ventricle ,business.industry ,Internal medicine ,medicine ,Cardiology ,Hippocampal formation ,business ,medicine.disease - Published
- 2020
18. Interstage Home Monitoring for Infants With Single Ventricle Heart Disease: Education and Management
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Nancy Rudd, Kathleen A. Mussatto, Jo Ann Nieves, Sarah Robinson, Girish S Shirali, Garick D. Hill, Michelle Steltzer, Vascular Biology, Nancy S. Ghanayem, Linda M. Lambert, Karen Uzark, and Nancy A. Pike
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Reoperation ,caregivers ,medicine.medical_specialty ,Quality management ,Heart disease ,Home Nursing ,cardiovascular abnormalities ,Statement (logic) ,Primary care ,030204 cardiovascular system & hematology ,Norwood Procedures ,Weight Gain ,univentricular heart ,03 medical and health sciences ,Enteral Nutrition ,0302 clinical medicine ,Risk Factors ,Hypoplastic Left Heart Syndrome ,Health care ,medicine ,Humans ,Decompensation ,Oximetry ,030212 general & internal medicine ,Intensive care medicine ,Monitoring, Physiologic ,Patient Care Team ,business.industry ,Communication ,Palliative Care ,Infant ,American Heart Association ,Transitional Care ,medicine.disease ,Caregiver support ,Quality Improvement ,Patient Discharge ,United States ,Checklist ,Oxygen ,AHA Scientific Statements ,medicine.anatomical_structure ,Ventricle ,AHA Scientific Statement ,Cardiology and Cardiovascular Medicine ,business - Abstract
This scientific statement summarizes the current state of knowledge related to interstage home monitoring for infants with shunt‐dependent single ventricle heart disease. Historically, the interstage period has been defined as the time of discharge from the initial palliative procedure to the time of second stage palliation. High mortality rates during the interstage period led to the implementation of in‐home surveillance strategies to detect physiologic changes that may precede hemodynamic decompensation in interstage infants with single ventricle heart disease. Adoption of interstage home monitoring practices has been associated with significantly improved morbidity and mortality. This statement will review in‐hospital readiness for discharge, caregiver support and education, healthcare teams and resources, surveillance strategies and practices, national quality improvement efforts, interstage outcomes, and future areas for research. The statement is directed toward pediatric cardiologists, primary care providers, subspecialists, advanced practice providers, nurses, and those caring for infants undergoing staged surgical palliation for single ventricle heart disease.
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- 2020
19. Council on Cardiovascular and Stroke Nursing Liaison Report: Pediatric Cardiovascular Nursing Committee
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Linda M. Lambert, Ruth E. Taylor-Piliae, Anne M. Fink, and Nancy A. Pike
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Advanced and Specialized Nursing ,Cardiovascular Nursing ,medicine.medical_specialty ,business.industry ,Advisory Committees ,MEDLINE ,Health Promotion ,Congresses as Topic ,medicine.disease ,Pediatric Nursing ,Societies, Nursing ,Emergency medicine ,Practice Guidelines as Topic ,Medicine ,Humans ,Cardiology and Cardiovascular Medicine ,business ,Stroke ,Cardiovascular nursing - Published
- 2020
20. Author response for 'Caudate nuclei volume alterations and cognition and mood dysfunctions in adolescents with single ventricle heart disease'
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null Sarah Noorani, null Bhaswati Roy, null Ashish K. Sahib, null Cristina Cabrera‐Mino, null Nancy J. Halnon, null Mary A. Woo, null Alan B. Lewis, null Nancy A. Pike, and null Rajesh Kumar
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- 2020
21. Author response for 'Caudate nuclei volume alterations and cognition and mood dysfunctions in adolescents with single ventricle heart disease'
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Nancy J Halnon, Mary A. Woo, Sarah Noorani, Nancy A. Pike, Cristina Cabrera-Mino, Rajesh Kumar, Bhaswati Roy, Alan B. Lewis, and Ashish Sahib
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medicine.medical_specialty ,medicine.anatomical_structure ,Mood ,Heart disease ,business.industry ,Ventricle ,Internal medicine ,medicine ,Cardiology ,Cognition ,medicine.disease ,business ,Volume (compression) - Published
- 2020
22. A Review of Literature on Health-Related Quality of Life of Retinoblastoma Survivors
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Paula J Belson, Nancy A. Pike, Mary-Lynn Brecht, Ron D. Hays, and Jo-Ann Eastwood
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Male ,Pediatrics ,medicine.medical_specialty ,Adolescent ,Retinal Neoplasms ,Population ,Visual impairment ,Psychological intervention ,03 medical and health sciences ,Young Adult ,0302 clinical medicine ,Quality of life ,Cancer Survivors ,Surveys and Questionnaires ,medicine ,Humans ,Early childhood ,Young adult ,education ,Child ,education.field_of_study ,Oncology (nursing) ,Retinoblastoma ,business.industry ,Infant, Newborn ,Infant ,medicine.disease ,humanities ,030220 oncology & carcinogenesis ,Child, Preschool ,Quality of Life ,Female ,Self Report ,medicine.symptom ,business ,Psychosocial ,030217 neurology & neurosurgery - Abstract
Background: Retinoblastoma is a malignant tumor of the eye that typically presents in early childhood and occurs in approximately 1 in 20,000 births. While active treatment of the tumor is typically completed in childhood, survivors often suffer from long-term effects from treatment including visual impairment, facial deformities, and fear of recurrence or secondary cancer. However, little is known how these long-term effects affect their health-related quality of life (HRQOL). Purpose: To review the literature on HRQOL in retinoblastoma survivors. Method: We searched three electronic databases from January 2005 to December 2018 for original research articles reporting on HRQOL or individual domains such as function, cognition, and psychosocial outcomes in retinoblastoma survivors. Results: A total of 59 articles were reviewed and 15 were identified as eligible. Five of the studies reported worse HRQOL in retinoblastoma survivors than controls or general population norms. Parent-proxy ratings were worse than survivors’ self-reports. Conclusion: Our findings confirm the need for further HRQOL research to assess the factors influencing long-term outcomes associated with treatment in adolescent and young adult retinoblastoma survivors. By identifying any potential deficits in specific domains of HRQOL, early interventions might be developed to improve HRQOL in retinoblastoma survivors.
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- 2019
23. Brain abnormalities in cognition, anxiety, and depression regulatory regions in adolescents with single ventricle heart disease
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Ritika Gupta, Mary A. Woo, Nancy A. Pike, Bhaswati Roy, Nancy Halnon, Rajesh Kumar, Sadhana Singh, and Alan B. Lewis
- Subjects
Male ,medicine.medical_specialty ,Adolescent ,Heart Diseases ,Beck Anxiety Inventory ,Hippocampus ,Anxiety ,030204 cardiovascular system & hematology ,Audiology ,Corpus callosum ,Amygdala ,Article ,03 medical and health sciences ,Cellular and Molecular Neuroscience ,Sex Factors ,0302 clinical medicine ,medicine ,Humans ,Cognitive Dysfunction ,Depression (differential diagnoses) ,Depression ,business.industry ,Montreal Cognitive Assessment ,Cognition ,Cross-Sectional Studies ,medicine.anatomical_structure ,Brain Injuries ,Female ,medicine.symptom ,business ,030217 neurology & neurosurgery - Abstract
BACKGROUND Single ventricle heart disease (SVHD) adolescents show cognitive impairments and anxiety and depressive symptoms, indicating the possibility of brain injury in regions that control these functions. However, brain tissue integrity in cognition, anxiety, and depression regulatory sites in SVHD remains unclear. We examined brain tissue changes in SVHD compared to controls using T2-relaxometry procedures, which measure free water content and show tissue injury. METHODS Proton-density and T2-weighted images, using a 3.0-Tesla MRI, as well as anxiety (Beck anxiety inventory [BAI]), depressive symptoms (patient health questionnaire-9 [PHQ-9]), and cognition (wide range assessment of memory and learning 2 [WRAML2] and Montreal cognitive assessment [MoCA]) data were collected from 20 SVHD (age: 15.8 ± 1.1 years, male/female: 11/9) and 36 controls (age: 16.0 ± 1.1 years, male/female: 19/17). Whole-brain T2-relaxation maps were calculated, normalized to a common space, smoothed, and compared between groups and sexes (analysis of covariance; covariates: age, sex; p
- Published
- 2018
24. Validity of the Montreal Cognitive Assessment Screener in Adolescents and Young Adults With and Without Congenital Heart Disease
- Author
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Marie Kanne Poulsen, Mary A. Woo, and Nancy A. Pike
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Adult ,Heart Defects, Congenital ,Male ,Pediatrics ,medicine.medical_specialty ,Adolescent ,Concurrent validity ,Neuropsychological Tests ,Sensitivity and Specificity ,Article ,California ,Young Adult ,03 medical and health sciences ,0302 clinical medicine ,030225 pediatrics ,medicine ,Humans ,Cognitive Dysfunction ,Generalizability theory ,Young adult ,General Nursing ,Receiver operating characteristic ,Reproducibility of Results ,Montreal Cognitive Assessment ,Construct validity ,Cognition ,Mann–Whitney U test ,Female ,Psychology ,030217 neurology & neurosurgery - Abstract
Background Cognitive deficits are common, long-term sequelae in children and adolescents with congenital heart disease (CHD) who have undergone surgical palliation. However, there is a lack of a validated brief cognitive screening tool appropriate for the outpatient setting for adolescents with CHD. One candidate instrument is the Montreal Cognitive Assessment (MoCA) questionnaire. Objective The purpose of the research was to validate scores from the MoCA against the General Memory Index (GMI) of the Wide Range Assessment of Memory and Learning, 2nd Edition (WRAML2), a widely accepted measure of cognition/memory, in adolescents and young adults with CHD. Methods We administered the MoCA and the WRAML2 to 156 adolescents and young adults ages 14–21 (80 youth with CHD and 76 healthy controls who were gender and age matched). Spearman’s rank order correlations were used to assess concurrent validity. To assess construct validity, the Mann–Whitney U test was used to compare differences in scores in youth with CHD and the healthy control group. Receiver operating characteristic curves were created and area under the curve, sensitivity, specificity, positive predictive value, and negative predictive value were also calculated. Results The MoCA median scores in the CHD versus healthy controls were (23, range 15–29 vs. 28, range 22–30; p < .001), respectively. With the screening cutoff scores at
- Published
- 2017
25. Evaluation and Management of the Child and Adult With Fontan Circulation: A Scientific Statement From the American Heart Association
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Michael A. Gatzoulis, Tain-Yen Hsia, Adrienne H. Kovacs, Jack Rychik, Bradley S. Marino, Karen K. Stout, Marc Gewillig, Gruschen R. Veldtman, Nancy A. Pike, Yves d'Udekem, Adel K. Younoszai, Mark D. Rodefeld, Andrew M. Atz, Kurt R. Schumacher, Brian W. McCrindle, David S. Celermajer, Jane W. Newburger, Barbara J. Deal, Daphne T. Hsu, and David N. Rosenthal
- Subjects
medicine.medical_specialty ,Cardiac & Cardiovascular Systems ,Heart disease ,PROTEIN-LOSING ENTEROPATHY ,medicine.medical_treatment ,Population ,ACUTE KIDNEY INJURY ,030204 cardiovascular system & hematology ,Fontan procedure ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,PULMONARY ARTERIOVENOUS-MALFORMATIONS ,QUALITY-OF-LIFE ,Physiology (medical) ,MAJOR ADVERSE EVENTS ,medicine ,030212 general & internal medicine ,Tricuspid atresia ,Intensive care medicine ,education ,Heart transplantation ,education.field_of_study ,Science & Technology ,CARDIAC MAGNETIC-RESONANCE ,business.industry ,LONG-TERM SURVIVAL ,medicine.disease ,congenital heart defects ,AHA Scientific Statements ,FUNCTIONAL SINGLE-VENTRICLE ,TOTAL CAVOPULMONARY CONNECTION ,medicine.anatomical_structure ,Peripheral Vascular Disease ,quality of life ,Ventricle ,Circulatory system ,Cardiovascular System & Cardiology ,Cardiology and Cardiovascular Medicine ,business ,Life Sciences & Biomedicine ,INTRAATRIAL REENTRANT TACHYCARDIA - Abstract
It has been 50 years since Francis Fontan pioneered the operation that today bears his name. Initially designed for patients with tricuspid atresia, this procedure is now offered for a vast array of congenital cardiac lesions when a circulation with 2 ventricles cannot be achieved. As a result of technical advances and improvements in patient selection and perioperative management, survival has steadily increased, and it is estimated that patients operated on today may hope for a 30-year survival of >80%. Up to 70 000 patients may be alive worldwide today with Fontan circulation, and this population is expected to double in the next 20 years. In the absence of a subpulmonary ventricle, Fontan circulation is characterized by chronically elevated systemic venous pressures and decreased cardiac output. The addition of this acquired abnormal circulation to innate abnormalities associated with single-ventricle congenital heart disease exposes these patients to a variety of complications. Circulatory failure, ventricular dysfunction, atrioventricular valve regurgitation, arrhythmia, protein-losing enteropathy, and plastic bronchitis are potential complications of the Fontan circulation. Abnormalities in body composition, bone structure, and growth have been detected. Liver fibrosis and renal dysfunction are common and may progress over time. Cognitive, neuropsychological, and behavioral deficits are highly prevalent. As a testimony to the success of the current strategy of care, the proportion of adults with Fontan circulation is increasing. Healthcare providers are ill-prepared to tackle these challenges, as well as specific needs such as contraception and pregnancy in female patients. The role of therapies such as cardiovascular drugs to prevent and treat complications, heart transplantation, and mechanical circulatory support remains undetermined. There is a clear need for consensus on how best to follow up patients with Fontan circulation and to treat their complications. This American Heart Association statement summarizes the current state of knowledge on the Fontan circulation and its consequences. A proposed surveillance testing toolkit provides recommendations for a range of acceptable approaches to follow-up care for the patient with Fontan circulation. Gaps in knowledge and areas for future focus of investigation are highlighted, with the objective of laying the groundwork for creating a normal quality and duration of life for these unique individuals. ispartof: CIRCULATION vol:140 issue:6 pages:E234-E284 ispartof: location:United States status: published
- Published
- 2019
26. Impact of Operative and Postoperative Factors on Neurodevelopmental Outcomes After Cardiac Operations
- Author
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Fukiko Ichida, Dean B. Andropoulos, Kim F. Duncan, Jane W. Newburger, Christian Pizarro, David C. Bellinger, William T. Mahle, Hedwig H. Hövels-Gürich, Jennifer S. Li, David Wypij, Lara S. Shekerdemian, Anne Synnes, J. William Gaynor, Jeffrey P. Jacobs, John Beca, Nancy S. Ghanayem, Ismee A. Williams, Shaji C. Menon, Andrew M. Atz, Caren S. Goldberg, Robert N. Justo, Mary T. Donofrio, Joseph Atallah, Nancy A. Pike, Patrick S. McQuillen, Victoria L. Pemberton, Christian Stopp, and Beatrice Latal
- Subjects
Heart Defects, Congenital ,Male ,Pulmonary and Respiratory Medicine ,Pediatrics ,medicine.medical_specialty ,medicine.medical_treatment ,030204 cardiovascular system & hematology ,dextro-Transposition of the great arteries ,Bayley Scales of Infant Development ,law.invention ,Hypoplastic left heart syndrome ,03 medical and health sciences ,Child Development ,0302 clinical medicine ,law ,030225 pediatrics ,medicine ,Cardiopulmonary bypass ,Extracorporeal membrane oxygenation ,Humans ,Cardiopulmonary resuscitation ,Cardiac Surgical Procedures ,Psychomotor learning ,Cardiopulmonary Bypass ,business.industry ,Brain ,Infant ,medicine.disease ,Child, Preschool ,Ventricular assist device ,Anesthesia ,Female ,Surgery ,Cardiology and Cardiovascular Medicine ,business - Abstract
Neurodevelopmental disability is common after operations for congenital heart defects. We previously showed that patient and preoperative factors, center, and calendar year of birth explained less than 30% of the variance for the Psychomotor Development Index (PDI) and the Mental Development Index (MDI) of the Bayley Scales of Infant Development-Second Edition. Here we investigate how much additional variance in PDI and MDI is contributed by operative variables and postoperative events.We analyzed neurodevelopmental outcomes after operations with cardiopulmonary bypass at age 9 months or younger between 1996 and 2009. We used linear regression to investigate the effect of operative factors (age, weight, and cardiopulmonary bypass variables) and postoperative events on neurodevelopmental outcomes, adjusting for center, type of congenital heart defect, year of birth, and preoperative factors.We analyzed 1,770 children from 22 institutions with neurodevelopmental testing at age 13.3 months (range, 6 to 30 months). Among operative factors, longer total support time was associated with lower PDI and MDI (p0.05). When postoperative events were added, use of either extracorporeal membrane oxygenation or ventricular assist device support, and longer postoperative length of stay were associated with lower PDI and MDI (p0.05). Longer total support time was not a significant predictor in these models. After adjusting for patient, preoperative, intraoperative, and postoperative factors, measured intraoperative and postoperative factors accounted for 5% of the variances in PDI and MDI.Operative factors may be less important than innate patient and preoperative factors and postoperative events in predicting early neurodevelopmental outcomes after cardiac operations in infants. Neurodevelopmental outcomes improved over calendar time when adjusted for patient and medical variables.
- Published
- 2016
27. Altered brain diffusion tensor imaging indices in adolescents with the Fontan palliation
- Author
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Ebenezer Daniel, Luke Ehlert, Alan B. Lewis, Bhaswati Roy, Mary A. Woo, Sadhana Singh, Rajesh Kumar, Nancy Halnon, and Nancy A. Pike
- Subjects
Male ,Internal capsule ,Corpus callosum ,Fontan Procedure ,030218 nuclear medicine & medical imaging ,0302 clinical medicine ,Cognition ,Surveys and Questionnaires ,Medicine ,2.1 Biological and endogenous factors ,Brain injury ,Aetiology ,Pediatric ,Brain Diseases ,Fornix ,Nuclear Medicine & Medical Imaging ,medicine.anatomical_structure ,Diffusion tensor imaging ,Diffusion Tensor Imaging ,Neurological ,Cardiology ,Biomedical Imaging ,Mental health ,Female ,Cardiology and Cardiovascular Medicine ,Parahippocampal gyrus ,medicine.medical_specialty ,Adolescent ,Mammillary body ,Thalamus ,Clinical Sciences ,Basic Behavioral and Social Science ,Article ,03 medical and health sciences ,Clinical Research ,Internal medicine ,Fractional anisotropy ,Behavioral and Social Science ,Acquired Cognitive Impairment ,Humans ,Radiology, Nuclear Medicine and imaging ,Single ventricle heart disease ,business.industry ,Neurosciences ,Precentral gyrus ,Brain Disorders ,nervous system ,Anisotropy ,Neurology (clinical) ,business ,030217 neurology & neurosurgery - Abstract
PURPOSE: Single ventricle heart disease (SVHD) patients show injury in brain sites that regulate autonomic, mood, and cognitive functions. However, the nature (acute or chronic changes) and extent of brain injury in SVHD are unclear. Our aim was to examine regional brain tissue damage in SVHD over controls using DTI-based mean diffusivity (MD), axial diffusivity (AD), radial diffusivity (RD), and fractional anisotropy (FA) procedures. METHODS: We collected two DTI series (3.0–Tesla MRI), mood and cognitive data from 27 SVHD and 35 control adolescents. Whole-brain MD, AD, RD, and FA maps were calculated from each series, realigned and averaged, normalized to a common space, smoothed, and compared between groups using ANCOVA (covariates, age and sex; false-discovery-rate, p
- Published
- 2018
28. Acculturation, Medication Adherence, Lifestyle Behaviors, and Blood Pressure Control Among Arab Americans
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Donald E. Morisky, Linda R. Phillips, Janet C. Mentes, Ayman Tailakh, Lorraine S. Evangelista, and Nancy A. Pike
- Subjects
Cultural Studies ,Blood pressure control ,Gerontology ,hypertension ,Transcultural Nursing ,Cross-sectional study ,Health Behavior ,Medication adherence ,Blood Pressure ,Arab americans ,Nursing ,030204 cardiovascular system & hematology ,Article ,03 medical and health sciences ,0302 clinical medicine ,Surveys and Questionnaires ,Arab Americans ,Humans ,Medicine ,030212 general & internal medicine ,General Nursing ,business.industry ,United States ,Acculturation ,Arabs ,Cross-Sectional Studies ,Blood pressure ,medication adherence ,Hypertension ,Transcultural nursing ,Public Health and Health Services ,Patient Compliance ,business ,acculturation ,Body mass index ,lifestyle behaviors ,self-care management - Abstract
Purpose: The aim of this study was to examine the relationship between acculturation, medication adherence, lifestyle behaviors (e.g., physical activity, nutrition, weight control), and blood pressure control among hypertensive Arab Americans. Design: The study utilized a cross-sectional descriptive design. A convenience sample of 126 participants completed questionnaires and had measures of blood pressure, weight, and height. Forty-six participants were hypertensive and were included in the analysis. Results: Only 29.2% of participants reported high medication adherence. High medication adherence was associated with lower diastolic blood pressure, eating a healthy diet, and following lifestyle modifications. Acculturation was significantly associated with physical activity and body mass index. Conclusion: Our study found that acculturated participants were more adherent to medications and physical activity and had better blood pressure control. Further studies are needed to explore how acculturation improves adherence and what factors contribute to better adherence in order to design culturally sensitive interventions. © 2014, SAGE Publications. All rights reserved.
- Published
- 2014
29. Healthy Work Environments and Staff Nurse Retention
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Wendy Robbins, Nancy Blake, Nancy A. Pike, Linda Searle Leach, and Jack Needleman
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Adult ,Male ,medicine.medical_specialty ,Leadership and Management ,Physician-Nurse Relations ,Personnel Turnover ,Nursing Staff, Hospital ,Intensive Care Units, Pediatric ,Job Satisfaction ,Occupational safety and health ,law.invention ,Nursing ,law ,Intensive care ,medicine ,Humans ,Nurse Administrators ,Cooperative Behavior ,Child ,Workplace ,Occupational Health ,Aged ,Pediatric intensive care unit ,business.industry ,Communication ,General Medicine ,Middle Aged ,Intensive care unit ,Leadership ,Family medicine ,Scale (social sciences) ,Workforce ,Female ,Job satisfaction ,business - Abstract
BACKGROUND A healthy work environment can improve patient outcomes and registered nurse (RN) turnover. Creating cultures of retention and fostering healthy work environments are 2 major challenges facing nurse leaders today. SPECIFIC AIMS Examine the effects of the healthy work environment (communication, collaboration, and leadership) on RN turnover from data collected from a research study. METHODS Descriptive, cross-sectional, correlational design. Pediatric critical care RNs from 10 pediatric intensive care units (PICU) completed the Practice Environment Scale of the Nursing Work Index Revised and a subscale of the Intensive Care Unit Nurse-Physician Communication Questionnaire. These staff nurses were asked whether they intend to leave their current job in the next 6 months. Statistical analysis included correlations, multiple linear regression, t tests (2-tailed), and 1-way analysis of variance. RESULTS A total of 415 RNs completed the survey. There was a statistically significant relationship between leadership and the intent to leave (P < .05). There was also an inverse relationship between years of experience and intent to leave. None of the communication variables between RNs and among RNs and MDs or collaboration were significantly associated with PICU nurses' intention to leave. CONCLUSION Effective leadership in the PICU is important to PICU RNs and significantly influences their decisions about staying in their current job.
- Published
- 2013
30. Hypertension prevalence, awareness, and control in Arab countries: A systematic review
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Nancy A. Pike, Lorraine S. Evangelista, Donald E. Morisky, Linda R. Phillips, Janet C. Mentes, and Ayman Tailakh
- Subjects
Pediatrics ,medicine.medical_specialty ,education.field_of_study ,business.industry ,Population ,Scopus ,Rate control ,social sciences ,General Medicine ,CINAHL ,Cochrane Library ,eye diseases ,Lifestyle modification ,Hypertension prevalence ,medicine ,business ,education ,geographic locations ,General Nursing ,Demography - Abstract
One billion of the world's population has hypertension, resulting in four million deaths per year. Data on the prevalence of hypertension in the Arab world are very limited. This review summarizes existing knowledge regarding prevalence, awareness, and control of hypertension in Arab countries. The PubMed, Cochrane Library, Scopus, and CINAHL databases were searched for publications on HTN among Arab people from 1980 to January 2011. Only 13 studies were identified in the literature from 10 Arab countries. The overall estimated prevalence of hypertension was 29.5% (n = 45 379), which indicates a higher prevalence of hypertension among Arabs compared to people from the USA (28%) and sub-Saharan African (27.6%). Awareness of hypertension was reported for 46% of the studies and varied from 18% (Jordan) to 79.8% (Syria). The control rate varied from 56% (Tunisia) to 92% (Egypt and Syria). The prevalence of hypertension was found to increase with age, occurring more frequently in Arab women.
- Published
- 2013
31. Predictors of Memory Deficits in Adolescents and Young Adults with Congenital Heart Disease Compared to Healthy Controls
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Nancy Halnon, Mary A. Woo, Rajesh Kumar, Alan B. Lewis, Nancy A. Pike, Dylan Faire, Marie Kanne Poulsen, and Wendy Evangelista
- Subjects
Pediatrics ,medicine.medical_specialty ,030204 cardiovascular system & hematology ,Anxiety ,verbal memory ,Cardiovascular ,working memory ,memory ,Paediatrics and Reproductive Medicine ,03 medical and health sciences ,0302 clinical medicine ,Visual memory ,Quality of life ,7.1 Individual care needs ,Clinical Research ,030225 pediatrics ,Behavioral and Social Science ,Medicine ,Young adult ,Psychiatry ,Depression (differential diagnoses) ,Original Research ,Pediatric ,Other Medical and Health Sciences ,business.industry ,Working memory ,lcsh:RJ1-570 ,Neurosciences ,lcsh:Pediatrics ,anxiety ,congenital heart disease ,3. Good health ,Heart Disease ,Mental Health ,Pediatrics, Perinatology and Child Health ,Management of diseases and conditions ,Verbal memory ,medicine.symptom ,business ,visual memory ,Psychosocial ,self-efficacy - Abstract
Introduction Adolescents and young adults with congenital heart disease (CHD) show a range of memory deficits, which can dramatically impact their clinical outcomes and quality of life. However, few studies have identified predictors of these memory changes. The purpose of this investigation was to identify predictors of memory deficits in adolescents and young adults with CHD after surgical palliation compared to healthy controls. Method One hundred fifty-six adolescents and young adults (80 CHD and 76 controls; age 14–21 years) were recruited and administered an instrument to assess memory [Wide Range Assessment of Memory and Learning Second Edition – general memory index (GMI) score] and completed questionnaires that measure anxiety, depression, sleepiness, health status, and self-efficacy. Descriptive and non-parametric statistics were used to assess group differences, and logistic regression to identify predictors of memory deficits. Results CHD subjects consisted of 58% males, median age 17 years, 43% Hispanic, and medians of 2 previous heart surgeries and 14 years since last surgery. Memory deficits (GMI ≤ 85) were identified in 50% CHD compared to 4% healthy controls (median GMI 85 vs. 104, p
- Published
- 2016
32. Challenges and successes of recruitment in the 'angiotensin-converting enzyme inhibition in infants with single ventricle trial' of the Pediatric Heart Network
- Author
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Teresa Atz, Kari Crawford, Jeffrey P. Jacobs, Chitra Ravishankar, Gail D. Pearson, Daphne T. Hsu, Nancy A. Pike, Mingfen Xu, Kerstin Allen, James F. Cnota, Linda M. Lambert, Alan B. Lewis, Nancy S. Ghanayem, Rosalind Korsin, and Victoria L. Pemberton
- Subjects
Heart Defects, Congenital ,Canada ,medicine.medical_specialty ,MEDLINE ,Angiotensin-Converting Enzyme Inhibitors ,Placebo ,Article ,Health care ,medicine ,Humans ,Multicenter Studies as Topic ,Intensive care medicine ,Randomized Controlled Trials as Topic ,business.industry ,Patient Selection ,Infant, Newborn ,Infant ,General Medicine ,United States ,Clinical trial ,medicine.anatomical_structure ,Clinical research ,Ventricle ,Pediatrics, Perinatology and Child Health ,Observational study ,Cardiology and Cardiovascular Medicine ,business ,Healthcare providers - Abstract
Advances in paediatric healthcare are often the result of randomised clinical trials.1,2 Notable examples include trials on vaccines,3 surfactant in preterm infants,4 and oncology.5 Researchers, healthcare providers, and parents acknowledge the importance of research, but effective recruitment into paediatric clinical trials remains a difficult task.6-9 Barriers to participation in paediatric research have been well described in the literature,10-16 but the literature on strategies for recruiting critically ill infants for clinical trials is limited.17-19 The concept of equipoise or the “uncertainty principle” can present challenges to recruitment in randomised controlled trials, especially when the study drug is routinely used in clinical practice.20 The ethical principle is upheld if there is true uncertainty about which trial arm is most likely to benefit the patient.20 Preconceived notions of efficacy on the part of the investigators should be discussed in advance to eliminate the lack of equipoise as a potential barrier to recruitment. The purpose of this report is to describe the key challenges for recruitment, the strategies implemented to address these challenges, and lessons learned from this experience. In the case of neonates with complex congenital cardiac diseases and functionally univentricular hearts, parents are under extreme stress when approached to participate in research, especially if the diagnosis was not made prenatally. Parents are mourning the loss of an expected “healthy child” and adjusting to the new realities of a child who will require multiple surgical and other procedures before 3 years of age. Appropriate practices and strategies of recruitment during this emotional time are key to engaging parents and their medical providers in a conversation about clinical research and securing successful enrolment of infants. In 2001, the Pediatric Heart Network was established by the National Heart, Lung, and Blood Institute, National Institutes of Health to conduct multi-centre clinical research in children with cardiovascular disease.21 After successful recruitment to an observational study22 and a randomised placebo-controlled drug trial in Kawasaki disease,23 the Pediatric Heart Network launched the “Angiotensin-Converting Enzyme Inhibition in Infants with Single Ventricle Trial” or the “Infant Single Ventricle Trial”.24,25 This double-blind, randomised placebo-controlled trial compared the effects of enalapril with placebo on somatic growth in 230 neonates with functionally univentricular hearts. After the “Infant Single Ventricle Trial” began, recruitment was more challenging than in previous studies and enrolment began to lag. Efforts to understand and remediate the problems were further complicated by the launch of the Pediatric Heart Network’s “Single Ventricle Reconstruction Trial”, a randomised surgical trial comparing two types of surgical shunts, in May, 2005,26,27 which recruited shortly after birth a subset of infants eligible for the “Infant Single Ventricle Trial”.
- Published
- 2012
33. Early Developmental Outcome in Children With Hypoplastic Left Heart Syndrome and Related Anomalies
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Jane W. Newburger, Kathryn E. Gustafson, Lynn A. Sleeper, David C. Bellinger, David S. Cooper, Erica Sood, Shaji C. Menon, Richard G. Ohye, Catherine D. Krawczeski, Chitra Ravishankar, Sarah Tabbutt, Victoria L. Pemberton, J. William Gaynor, Theresa W. Atz, Ismee A. Williams, William T. Mahle, Minmin Lu, Seema Mital, Nancy A. Pike, Caren S. Goldberg, Kathleen A. Mussatto, Allan Lewis, and Carolyn Dunbar-Masterson
- Subjects
Male ,medicine.medical_specialty ,Pediatrics ,Developmental Disabilities ,Heart Ventricles ,Birth weight ,medicine.medical_treatment ,Neuropsychological Tests ,Pulmonary Artery ,Norwood Procedures ,Bayley Scales of Infant Development ,Article ,Hypoplastic left heart syndrome ,law.invention ,Postoperative Complications ,Randomized controlled trial ,Risk Factors ,law ,Physiology (medical) ,Internal medicine ,Hypoplastic Left Heart Syndrome ,Early Intervention, Educational ,Cardiopulmonary bypass ,Humans ,Medicine ,Abnormalities, Multiple ,Prospective Studies ,Child ,Hypoxia, Brain ,Prospective cohort study ,Blalock-Taussig Procedure ,business.industry ,Infant, Newborn ,Infant ,medicine.disease ,Cardiac surgery ,Socioeconomic Factors ,Child, Preschool ,Cardiology ,Brain Damage, Chronic ,Female ,Vascular Grafting ,Norwood procedure ,Psychomotor Disorders ,Cardiology and Cardiovascular Medicine ,business - Abstract
Background— Survivors of the Norwood procedure may experience neurodevelopmental impairment. Clinical trials to improve outcomes have focused primarily on methods of vital organ support during cardiopulmonary bypass. Methods and Results— In the Single Ventricle Reconstruction trial of the Norwood procedure with modified Blalock-Taussig shunt versus right-ventricle-to-pulmonary-artery shunt, 14-month neurodevelopmental outcome was assessed by use of the Psychomotor Development Index (PDI) and Mental Development Index (MDI) of the Bayley Scales of Infant Development-II. We used multivariable regression to identify risk factors for adverse outcome. Among 373 transplant-free survivors, 321 (86%) returned at age 14.3±1.1 (mean±SD) months. Mean PDI (74±19) and MDI (89±18) scores were lower than normative means (each P R 2 =26%) were clinical center ( P =0.003), birth weight P =0.023), longer Norwood hospitalization ( P P R 2 =34%) included center ( P P =0.04), genetic syndrome/anomalies ( P =0.04), lower maternal education ( P =0.04), longer mechanical ventilation after the Norwood procedure ( P P Conclusions— Neurodevelopmental impairment in Norwood survivors is more highly associated with innate patient factors and overall morbidity in the first year than with intraoperative management strategies. Improved outcomes are likely to require interventions that occur outside the operating room. Clinical Trial Registration— URL: http://www.clinicaltrials.gov . Unique identifier: NCT00115934.
- Published
- 2012
34. Abstract 13543: Brain Injury in Adolescents With Single Ventricle Heart Disease Compared to Healthy Controls
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Nancy A Pike, Sudhakar Tummala, Marie K Poulsen, Nancy J Halnon, Alan B Lewis, and Rajesh Kumar
- Subjects
nervous system ,Physiology (medical) ,Cardiology and Cardiovascular Medicine - Abstract
Background: Adolescents with single ventricle heart disease (SVHD), who have undergone staged surgical palliation, have increased risk for neurocognitive deficits. However, the type and location of brain injury in SVHD adolescents remains unclear. Purpose: Examine brain injury, using Diffusion Tensor Imaging (DTI) based axial (gray matter injury) and radial diffusivity (white matter injury) procedures in adolescents with SVHD who have undergone surgical palliation compared to controls. Methods: Six SVHD (age 16.2±1 years; 4 males; BMI 20±3.5 kg/m2), and 8 controls (age 16.2±1 years; 4 males; BMI 25.4±8.1 kg/m2) were examined via brain DTI on a 3T MRI. No subject had a history of prematurity, cardiac arrest, ECMO use, genetic syndrome, head trauma or severe developmental delays. Whole-brain axial/radial diffusivity maps were calculated. Statistics consisted of ANCOVA, with age and gender as covariates (uncorrected threshold, p < 0.005). Results: Increased axial diffusivity in SVHD compared to controls were found in several brain sites that include frontal gyrus (p=.03), temporal gyrus (p=.01), parahippocampal gyrus (p=.008), occipital gyrus (p=.02), insular cortex (p=.04), cerebellar cortex (p=.004), pons (p=.02), and cingulate gyrus (p=.006) (Fig1). Increased radial diffusivity appeared in frontal gyrus (p=.01), cingulate gyrus (p=.001), corpus callosum (p=.04), cerebellum (p=.004), temporal gyrus (p=.004), parahippocampal gyrus (p=.004), and pons (p=.004) (Fig2). Conclusions/Implications: Brain injury was more extensive in gray matter than white matter and was located in autonomic and cognitive areas of the brain in adolescents with SVCHD. These findings indicate that the neurocognitive deficits commonly reported in SVCHD are likely related to brain injury. Further investigation is needed to clarify these relationships and to evaluate potential interventions to repair and/or protect these brain regions in this high risk patient population.
- Published
- 2015
35. Reporting adverse events in a surgical trial for complex congenital heart disease: The Pediatric Heart Network experience
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Richard G. Ohye, Carolyn Dunbar-Masterson, Alan B. Lewis, Teresa Atz, Gail D. Pearson, Elizabeth Radojewski, Linda M. Lambert, Teresa Barnard, Nancy S. Ghanayem, Christian Pizarro, Jeffrey P. Jacobs, David F. Teitel, Sarah Tabbutt, Victoria L. Pemberton, Lisa Virzi, Nancy A. Pike, Mingfen Xu, and Minmin Lu
- Subjects
Pulmonary and Respiratory Medicine ,Pediatrics ,medicine.medical_specialty ,Randomization ,Context (language use) ,Documentation ,Article ,Hypoplastic left heart syndrome ,Adverse Event Reporting System ,symbols.namesake ,Postoperative Complications ,Hypoplastic Left Heart Syndrome ,Medicine ,Humans ,Poisson regression ,Cardiac Surgical Procedures ,Adverse effect ,business.industry ,Common Terminology Criteria for Adverse Events ,medicine.disease ,Institutional review board ,Emergency medicine ,symbols ,Regression Analysis ,Surgery ,business ,Cardiology and Cardiovascular Medicine - Abstract
ObjectiveThe purpose of this analysis was to evaluate a novel strategy for reporting adverse events in the Pediatric Heart Network’s randomized surgical trial of systemic–pulmonary artery shunt versus right ventricle–pulmonary artery conduit in infants with hypoplastic left heart syndrome. The strategy was developed to align the reporting process with the needs of a surgical trial while maintaining participant safety.MethodsAdverse event reporting was analyzed for 2 groups of study subjects: those randomized to a trial arm during a period in which a standard adverse event reporting system was used (period 1) and those randomized after institution of a system that focused serious adverse event reporting on 6 sentinel events (period 2). The analysis encompassed the period from randomization (Norwood surgery) to hospital discharge from stage II surgery. Adverse event rates were compared using a Poisson regression model for the number of events per subject.ResultsFrom period 1 to period 2, the rate of serious adverse events requiring expedited reporting decreased as expected (0.42 vs 0.14/subject/month of follow-up; P
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- 2011
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36. Clinical Profile of the Adolescent/Adult Fontan Survivor
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Nancy A. Pike, Lorraine S. Evangelista, Deborah Koniak-Griffin, Lynn V. Doering, John S. Child, and Alan B. Lewis
- Subjects
Pediatrics ,medicine.medical_specialty ,education.field_of_study ,Ejection fraction ,Heart disease ,business.industry ,medicine.medical_treatment ,Population ,General Medicine ,medicine.disease ,Fontan procedure ,Double inlet left ventricle ,Pediatrics, Perinatology and Child Health ,medicine ,Palpitations ,Radiology, Nuclear Medicine and imaging ,Surgery ,Tricuspid atresia ,medicine.symptom ,Cardiology and Cardiovascular Medicine ,education ,business ,New York Heart Association Class I - Abstract
Clinical Profile of the Adolescent/Adult Fontan Survivor chd_475 Nancy A. Pike, RN, PhD,* Lorraine S. Evangelista, RN, PhD,* Lynn V. Doering, RN, PhD,* Deborah Koniak-Griffin, RN, EdD,* Alan B. Lewis, MD, † and John S. Child, MD ‡ *School of Nursing, University of California, † Division of Pediatric Cardiology, Childrens Hospital Los Angeles, Ahmanson—UCLA Adult Congenital Heart Disease Center, Los Angeles, Calif, USA ABSTRACT Objectives. The study aims to describe the clinical profile of the adult Fontan survivor and identify the worries, symptoms, and the impact of cardiac surveillance most commonly experienced. Design. A descriptive, cross-sectional design was used. Setting. The study was performed in outpatient adult and pediatric cardiology clinics in university-affiliated and private practice offices. Patients. Fifty-four adolescent and adult patients with single ventricle congenital heart disease who have undergone the Fontan procedure participated in the study. The mean age was 26 ⫾ 9 years with 52% female and 63% Caucasian. Outcome Measures. Demographic and clinical data were obtained by a standard intake form and retrospective chart reviews. The Congenital Heart Disease TNO/AZL Adult Quality Of Life questionnaire was completed to assess worries, symptoms, and the impact of cardiac surveillance. Results. The majority were single (73%), employed or full-time students (93%), with health insurance (94%), had a single left ventricle (78%), the diagnosis of tricuspid atresia or double inlet left ventricle (59%), lateral tunnel Fontan type (44%), history of arrhythmias (76%), left ventricle ejection fraction percentage >50 (66%), oxygen saturations >90% (70%), frequent headaches (50%), scoliosis (22%), varicose veins, ascites, and liver cirrhosis (46%), normal body mass index (59%), and New York Heart Association class I (48%) and II–III (52%). Primary worries related to current health (83%), job/employment (69%), ability to work, (61%) and living independently (54%). The most bothersome symptoms were shortness of breath with ambulation (69%), dizziness (61%), and palpitations Conclusions. Fontan survivors experience residua and sequelae from multiple surgical procedures and the natural disease course. Our results support the need for ongoing assessment of both physical symptoms and psychosocial concerns, and suggest the need for multiple risk factor intervention strategies that improve physical and emotional health in Fontan survivors Key Words. Single Ventricle; Congenital Heart Disease; Fontan; Health-related Quality of Life Introduction C ongenital heart disease (CHD) not only is a disease of pediatrics but also represents a chronic adult disease population. The clinical profile of the general CHD population is changing related to advanced age, improved surgical tech- niques, and the survival of more complex con- genital heart defects. Approximately 1.3 million children in the United States with significant heart defects have survived into adulthood. 1 At the © 2011 Copyright the Authors Congenital Heart Disease © 2011 Wiley Periodicals, Inc. present time, there are as many adults with CHD as there are children with this disease. 2 Furthermore, this population is estimated to grow at a rate of 5% per year. 3 The current and future resources required to provide optimal care for this growing population reflect the increased size and number of adult CHD programs across the United States. 4 Over the past two decades, life expec- tancy for children with single ventricle CHD has increased significantly. This is related to Congenit Heart Dis. 2011;6:9–17
- Published
- 2011
37. Reduced Hippocampal Volume is Associated with Mood and Memory Deficits in Adolescents with Single Ventricle Heart Disease Compared to Controls
- Author
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Rajesh Kumar, Alan B. Lewis, Mary A. Woo, Bhaswati Roy, Stefi Moye, Nancy A. Pike, and Nancy Halnon
- Subjects
medicine.medical_specialty ,Mood ,medicine.anatomical_structure ,Heart disease ,business.industry ,Ventricle ,Internal medicine ,Pediatrics, Perinatology and Child Health ,Cardiology ,medicine ,Hippocampal volume ,medicine.disease ,business - Published
- 2018
38. Correlates of Fatigue in Patients With Heart Failure
- Author
-
Debra K. Moser, Alvina Ter-Galstanyan, Cheryl Westlake, Kathleen Dracup, Lorraine S. Evangelista, and Nancy A. Pike
- Subjects
Adult ,Male ,medicine.medical_specialty ,Nursing (miscellaneous) ,Cross-sectional study ,Health Status ,Nursing Methodology Research ,Workload ,Severity of Illness Index ,California ,Article ,Quality of life ,Risk Factors ,Surveys and Questionnaires ,Prevalence ,Humans ,Medicine ,Fatigue ,Depression (differential diagnoses) ,Aged ,Heart Failure ,Ejection fraction ,Depression ,business.industry ,Beck Depression Inventory ,Middle Aged ,medicine.disease ,Cross-Sectional Studies ,Mood ,Heart failure ,Multivariate Analysis ,Quality of Life ,Physical therapy ,Female ,Cardiology and Cardiovascular Medicine ,business ,Attitude to Health ,Psychosocial - Abstract
This study was conducted to determine the prevalence of fatigue and identify its demographic, clinical, and psychological correlates in 150 heart failure (HF) patients (73% men, 66% Caucasian, mean age 55.0 years, mean ejection fraction 26.7%+/-11%), from a single HF center, using the Profile of Mood States-Fatigue Subscale, the Minnesota Living With Heart Failure Questionnaire, and the Beck Depression Inventory. Sociodemographic and clinical data were obtained through self-report and chart abstraction. High levels of fatigue were reported in 50.4% of men and 51.2% of women. In a multivariate model, maximal workload, physical health, emotional health, and depression explained 51% of the variance in fatigue (P
- Published
- 2008
39. Stage I palliation for hypoplastic left heart syndrome: Norwood versus Sano modification
- Author
-
Brian Reemtsen, Nancy A. Pike, and Vaughn A. Starnes
- Subjects
Pulmonary Circulation ,medicine.medical_specialty ,Ventricular Dysfunction, Right ,medicine.medical_treatment ,Pulmonary Artery ,Anastomosis ,Hypoplastic left heart syndrome ,law.invention ,Randomized controlled trial ,law ,Hypoplastic Left Heart Syndrome ,medicine ,Humans ,Cardiac Surgical Procedures ,business.industry ,Anastomosis, Surgical ,Palliative Care ,Infant, Newborn ,Infant, Low Birth Weight ,medicine.disease ,Tricuspid Valve Insufficiency ,Surgery ,Shunt (medical) ,medicine.anatomical_structure ,Ventricle ,Blood Circulation ,Perioperative care ,Norwood procedure ,Hemodynamic stability ,Cardiology and Cardiovascular Medicine ,business ,Infant, Premature - Abstract
Purpose of review Advancements in surgical technique and perioperative care have significantly improved the survival of infants born with hypoplastic left heart syndrome. A recent modification to the Norwood procedure is being adopted by many centers to improve postoperative hemodynamic stability and survival to stage II palliation. The late effects of this modification, however, are speculated and have not been investigated. Recent findings Center-specific improved short-term outcomes have been reported in a few small, nonrandomized studies of a new approach to the Norwood procedure, which utilizes a right ventricle to pulmonary artery shunt or Sano modification to provide pulmonary blood flow rather than the standard modified Blalock-Taussig shunt. Summary The classic Norwood procedure and Sano modification each have specific advantages and disadvantages in both the short and long term. Data comparing the two techniques are nonrandomized, contradictory, and utilize historical controls. The optimal shunt to improve survival to the second-stage palliation is unknown. A multicenter randomized clinical trial comparing the Sano with the modified Blalock-Taussig shunt in hypoplastic left heart syndrome or variants is currently in progress and should hopefully provide future guidelines for shunt selection based on clinical presentation.
- Published
- 2007
40. Neurodevelopmental outcomes after cardiac surgery in infancy
- Author
-
J William, Gaynor, Christian, Stopp, David, Wypij, Dean B, Andropoulos, Joseph, Atallah, Andrew M, Atz, John, Beca, Mary T, Donofrio, Kim, Duncan, Nancy S, Ghanayem, Caren S, Goldberg, Hedwig, Hövels-Gürich, Fukiko, Ichida, Jeffrey P, Jacobs, Robert, Justo, Beatrice, Latal, Jennifer S, Li, William T, Mahle, Patrick S, McQuillen, Shaji C, Menon, Victoria L, Pemberton, Nancy A, Pike, Christian, Pizarro, Lara S, Shekerdemian, Anne, Synnes, Ismee, Williams, David C, Bellinger, and Jane W, Newburger
- Subjects
Heart Defects, Congenital ,Male ,medicine.medical_specialty ,Pediatrics ,Time Factors ,Heart disease ,Birth weight ,Developmental Disabilities ,Clinical Trials and Supportive Activities ,Population ,Cardiovascular ,Medical and Health Sciences ,Bayley Scales of Infant Development ,Nervous System ,neurodevelopmental outcomes ,Hypoplastic left heart syndrome ,Congenital ,Postoperative Complications ,Clinical Research ,Risk Factors ,Medicine ,Humans ,International Cardiac Collaborative on Neurodevelopment (ICCON) Investigators ,Cardiac Surgical Procedures ,education ,Heart Defects ,Pediatric ,Psychomotor learning ,education.field_of_study ,business.industry ,Psychology and Cognitive Sciences ,Infant ,Perinatal Period - Conditions Originating in Perinatal Period ,medicine.disease ,congenital heart defects ,Confidence interval ,Cardiac surgery ,Quality Education ,Heart Disease ,Pediatrics, Perinatology and Child Health ,Multivariate Analysis ,Congenital Structural Anomalies ,Female ,cardiopulmonary bypass ,business ,cardiac surgery - Abstract
BACKGROUND: Neurodevelopmental disability is the most common complication for survivors of surgery for congenital heart disease (CHD). METHODS: We analyzed individual participant data from studies of children evaluated with the Bayley Scales of Infant Development, second edition, after cardiac surgery between 1996 and 2009. The primary outcome was Psychomotor Development Index (PDI), and the secondary outcome was Mental Development Index (MDI). RESULTS: Among 1770 subjects from 22 institutions, assessed at age 14.5 ± 3.7 months, PDIs and MDIs (77.6 ± 18.8 and 88.2 ± 16.7, respectively) were lower than normative means (each P < .001). Later calendar year of birth was associated with an increased proportion of high-risk infants (complexity of CHD and prevalence of genetic/extracardiac anomalies). After adjustment for center and type of CHD, later year of birth was not significantly associated with better PDI or MDI. Risk factors for lower PDI were lower birth weight, white race, and presence of a genetic/extracardiac anomaly (all P ≤ .01). After adjustment for these factors, PDIs improved over time (0.39 points/year, 95% confidence interval 0.01 to 0.78; P = .045). Risk factors for lower MDI were lower birth weight, male gender, less maternal education, and presence of a genetic/extracardiac anomaly (all P < .001). After adjustment for these factors, MDIs improved over time (0.38 points/year, 95% confidence interval 0.05 to 0.71; P = .02). CONCLUSIONS: Early neurodevelopmental outcomes for survivors of cardiac surgery in infancy have improved modestly over time, but only after adjustment for innate patient risk factors. As more high-risk CHD infants undergo cardiac surgery and survive, a growing population will require significant societal resources.
- Published
- 2015
41. Reduced pleural drainage, length of stay, and readmissions using a modified Fontan management protocol
- Author
-
Nancy A. Pike, Vaughn A. Starnes, Barbara P. Gross, Winfield J. Wells, Carol Okuhara, and Joy Toyama
- Subjects
Pulmonary and Respiratory Medicine ,Heart Defects, Congenital ,Male ,medicine.medical_specialty ,Nothing by mouth ,Time Factors ,Pleural effusion ,medicine.medical_treatment ,Fontan Procedure ,Patient Readmission ,law.invention ,Fontan procedure ,law ,Interquartile range ,Cost Savings ,medicine ,Cardiopulmonary bypass ,Humans ,Hospital Costs ,Retrospective Studies ,Postoperative Care ,business.industry ,Retrospective cohort study ,Length of Stay ,medicine.disease ,Los Angeles ,Surgery ,Chest tube ,Pleural Effusion ,Parenteral nutrition ,Treatment Outcome ,Child, Preschool ,Drainage ,Female ,Parenteral Nutrition, Total ,Cardiology and Cardiovascular Medicine ,business - Abstract
Background Persistent pleural effusions after the Fontan procedure contribute to prolonged hospitalization and increased costs. We report our experience using a modified Wisconsin Fontan protocol to reduce chest tube drainage and hospital length of stay (LOS). Methods Single institutional retrospective chart review of 120 consecutive patients (60 before and 60 after initiation of our protocol) undergoing an extracardiac Fontan procedure from January 2004 to February 2007. Protocol influence was assessed by comparing group differences on duration of pleural drainage, requirement for nothing by mouth/total parenteral nutrition, hospital LOS, readmission for pleural effusion, and total hospital costs. Results Groups were similar in demographic characteristics, single ventricle morphology, preoperative hemodynamic parameters, and operative and immediate postoperative management. Median duration of pleural drainage and hospital LOS was reduced in the post- versus preprotocol groups: 4 days (interquartile range [IQR], 4-5 days) pre versus 6 days (IQR, 5-10 days) ( P P = .005), respectively. Pleural drainage lasting >1 week was also less common postprotocol: 23 (38%) before versus 7 (12%) after ( P = .001). Fewer postprotocol patients required nothing by mouth/total parenteral nutrition to control effusions: 5 pre versus 0 post ( P = .06), and fewer readmissions for effusions (14 before vs 7 after [ P = .1]). An average total cost savings of 22% and readmissions savings of 29% resulted in nearly $500,000 in institutional savings over the study period. Conclusions A modified Fontan protocol resulted in reduced time to chest tube removal, hospital LOS, and chest tube drainage lasting >1 week. There was a strong trend toward avoiding nothing by mouth/total parenteral nutrition to control pleural effusion and lower hospital costs.
- Published
- 2015
42. Innovations and Future Directions in Pediatric Cardiac Anesthesia and Surgery
- Author
-
Gail Boltz, Michelle Humel, Gregory B. Hammer, Michael D. Black, Shoichi Uezono, Nancy A. Pike, Mark Koransky, Patrick J. McCarthy, Vinit Wellis, and Robert D. Smith
- Subjects
Suction (medicine) ,medicine.medical_specialty ,Heart disease ,business.industry ,Spinal anesthesia ,030204 cardiovascular system & hematology ,medicine.disease ,Surgery ,Cardiac Anesthesia ,law.invention ,Cardiac surgery ,03 medical and health sciences ,0302 clinical medicine ,Anesthesiology and Pain Medicine ,030228 respiratory system ,law ,medicine ,Cardiopulmonary bypass ,Cardiology and Cardiovascular Medicine ,business ,Intensive care medicine ,Surgical interventions - Abstract
Minimally invasive pediatric cardiac surgery, although still evolving, lacks much of the corporate "thunder" directed to wards the adult patient. Because the majority of pediatric procedures remain "open" requiring cardiopulmonary bypass, innovations and/or modifications of already established tech niques might have important adult medical applications. The care of children born with congenital heart disease at our institution presently incorporates cardioscopy, active venous suction, epidural/spinal anesthesia, and, most recently, robotic video assistance. This mufti-disciplinary combination has not only optimized the cosmetics of the operation and use of hospital resources but also has maintained the safety and reproducibility of the surgical interventions.
- Published
- 2001
43. The Use of Regional Anesthesia in Combination With General Anesthesia for Cardiac Surgery in Children
- Author
-
Gregory B. Hammer, Shoichi Uezono, M. Gail Boltz, Nancy A. Pike, Mark D. Rodefeld, Michael D. Black, and Vinit Wellis
- Subjects
Mechanical ventilation ,medicine.medical_specialty ,Surgical stress ,business.industry ,medicine.medical_treatment ,030208 emergency & critical care medicine ,medicine.disease ,Surgery ,Cardiac surgery ,03 medical and health sciences ,0302 clinical medicine ,Anesthesiology and Pain Medicine ,Epidural hematoma ,Tracheal extubation ,Regional anesthesia ,030225 pediatrics ,Anesthesia ,medicine ,In patient ,Cardiology and Cardiovascular Medicine ,business ,Surgical patients - Abstract
The use of regional anesthesia in combination with general anesthesia for children undergoing cardiac surgery is the subject of a growing number of publications and presenta tions. Benefits of regional anesthesia in patients having car diac surgery include attenuation of the neuroendocrine response to surgical stress, improved postoperative pulmo nary function, enhanced cardiovascular stability, and im proved postoperative analgesia. To the extent that regional anesthesia facilitates early tracheal extubation in cardiac surgical patients, complications and costs associated with postoperative mechanical ventilation may be reduced. These benefits must, however, be weighed against the ad verse effects that may accompany the use of regional anes thesia, including hypotension, postoperative respiratory de pression, and epidural hematoma formation. In this article, the benefits and risks of regional anesthesia in infants and children undergoing open heart surgery are reviewed. In addition, specific spinal and epidural techniques currently in use are described, including management of side effects. Copyright © 2001 by W.B. Saunders Company.
- Published
- 2001
44. A Report of Two Hundred Twenty Cases of Regional Anesthesia in Pediatric Cardiac Surgery
- Author
-
William M. DeCampli, Nancy A. Pike, Bruce A. Reitz, Kristi L. Peterson, and Robert C. Robbins
- Subjects
medicine.medical_specialty ,business.industry ,Urinary retention ,medicine.medical_treatment ,Retrospective cohort study ,medicine.disease ,Surgery ,Cardiac surgery ,Anesthesiology and Pain Medicine ,Hematoma ,Lumbar ,Cardiothoracic surgery ,Anesthesia ,Anesthetic ,Medicine ,Intubation ,medicine.symptom ,business ,medicine.drug - Abstract
The use of regional anesthesia (ie, epidural, spinal, or caudal) has been reported in a few small series of children undergoing cardiac surgery, but not in larger studies. In this retrospective, descriptive study, we report the results of the use of regional anesthesia in 220 pediatric cardiac operations. We reviewed the records of children receiving a regional anesthetic for cardiothoracic surgery at Stanford Medical Center between January 1993 and February 1997. All patients were targeted for early tracheal extubation. A variety of regional techniques were used. Time to extubation, control of pain, incidence of respiratory depression and other complications, and length of hospital stay were determined. There were no deaths. Eighty-nine percent of the patients were tracheally extubated in the operating room; 4.1% of whom required reintubation within 24 h. Ninety-five percent +/-2.5% of the patients had pain scores < or =4.0 at all intervals postoperatively. Adverse effects of regional anesthesia included emesis (39%), pruritus (10%), urinary retention (7%), postoperative transient paresthesia (3%), and respiratory depression (1.8%). The incidence of peridural hematoma was zero. The rate of adverse effects was lower in the thoracic catheter epidural approach as compared with various caudal, lumbar epidural, and spinal approaches. Hospital duration of stay was not effected by the presence of regional anesthetic complications. In this study, regional anesthesia was safe and effective in the management of pediatric patients undergoing cardiac surgery.
- Published
- 2000
45. Variation in feeding practices following the Norwood procedure
- Author
-
Linda M, Lambert, Nancy A, Pike, Barbara, Medoff-Cooper, Victor, Zak, Victoria L, Pemberton, Lisa, Young-Borkowski, Martha L, Clabby, Kathryn N, Nelson, Richard G, Ohye, Bethany, Trainor, Karen, Uzark, Nancy, Rudd, Louise, Bannister, Rosalind, Korsin, David S, Cooper, Christian, Pizarro, Sinai C, Zyblewski, Bronwyn H, Bartle, Richard V, Williams, and Catherine L, Webb
- Subjects
Male ,Pediatrics ,medicine.medical_specialty ,medicine.medical_treatment ,Population ,Standard score ,Stage ii ,Norwood Procedures ,Weight Gain ,Article ,Hypoplastic left heart syndrome ,Enteral Nutrition ,Hypoplastic Left Heart Syndrome ,medicine ,Hospital discharge ,Humans ,education ,Retrospective Studies ,Gastrostomy ,education.field_of_study ,business.industry ,Infant, Newborn ,Length of Stay ,medicine.disease ,Patient Discharge ,Treatment Outcome ,Gastrostomy tube ,Anesthesia ,Pediatrics, Perinatology and Child Health ,Feeding mode ,Norwood procedure ,Female ,business ,Follow-Up Studies - Abstract
To assess variation in feeding practice at hospital discharge after the Norwood procedure, factors associated with tube feeding, and associations among site, feeding mode, and growth before stage II.From May 2005 to July 2008, 555 subjects from 15 centers were enrolled in the Pediatric Heart Network Single Ventricle Reconstruction Trial; 432 survivors with feeding data at hospital discharge after the Norwood procedure were analyzed.Demographic and clinical variables were compared among 4 feeding modes: oral only (n = 140), oral/tube (n = 195), nasogastric tube (N-tube) only (n = 40), and gastrostomy tube (G-tube) only (n = 57). There was significant variation in feeding mode among sites (oral only 0%-81% and G-tube only 0%-56%, P.01). After adjusting for site, multivariable modeling showed G-tube feeding at discharge was associated with longer hospitalization, and N-tube feeding was associated with greater number of discharge medications (R(2) = 0.65, P.01). After adjusting for site, mean pre-stage II weight-for-age z-score was significantly higher in the oral-only group (-1.4) vs the N-tube-only (-2.2) and G-tube-only (-2.1) groups (P = .04 and .02, respectively).Feeding mode at hospital discharge after the Norwood procedure varied among sites. Prolonged hospitalization and greater number of medications at the time of discharge were associated with tube feeding. Infants exclusively fed orally had a higher weight-for-age z score pre-stage II than those fed exclusively by tube. Exploring strategies to prevent morbidities and promote oral feeding in this highest risk population is warranted.
- Published
- 2013
46. Regression of severe pulmonary arteriovenous malformations after Fontan revision and 'hepatic factor' rerouting
- Author
-
Michael D. Black, Jeffrey A. Feinstein, Bruce A. Reitz, Luca A. Vricella, and Nancy A. Pike
- Subjects
Heart Defects, Congenital ,Pulmonary and Respiratory Medicine ,medicine.medical_specialty ,Palliative care ,Heart Ventricles ,medicine.medical_treatment ,Hepatic Veins ,Pulmonary Artery ,Fontan Procedure ,Venous flow ,Fontan procedure ,Arteriovenous Shunt, Surgical ,Postoperative Complications ,medicine ,Humans ,Abnormalities, Multiple ,In patient ,Child ,Cyanosis ,Pulmonary Valve ,Vascular disease ,business.industry ,Palliative Care ,Prostheses and Implants ,Situs Inversus ,medicine.disease ,Univentricular heart ,Surgery ,Situs inversus ,Arteriovenous Fistula ,Hemorheology ,Circulatory system ,Female ,Venae Cavae ,Cardiology and Cardiovascular Medicine ,business - Abstract
Although previously described in patients undergoing staged palliation for univentricular heart disease, the mechanism by which hepatic venous flow prevents development of pulmonary arteriovenous malformations is still not completely understood. We present a case in which successful H-type Fontan revision with rerouting of hepatic venous flow through a hemiazygous vein successfully reversed the progression of severe left pulmonary arteriovenous malformations.
- Published
- 2004
47. A crossover randomized prospective pilot study evaluating a central venous catheter team in reducing catheter-related bloodstream infections in pediatric oncology patients
- Author
-
Rita Secola, Nancy A. Pike, Jack Needleman, Richard Sposto, Mary Ann Lewis, C. Azen, and Lynn V. Doering
- Subjects
Male ,medicine.medical_specialty ,Catheterization, Central Venous ,medicine.medical_treatment ,MEDLINE ,Pilot Projects ,Pediatrics ,law.invention ,Randomized controlled trial ,law ,Neoplasms ,Sepsis ,medicine ,Infection control ,Humans ,Prospective Studies ,Intensive care medicine ,Prospective cohort study ,Child ,Cross-Over Studies ,Oncology (nursing) ,business.industry ,Experimental Unit ,equipment and supplies ,Hospitals, Pediatric ,Crossover study ,Catheter ,Female ,business ,Central venous catheter - Abstract
Background: Treatment for most children with cancer includes the use of a central venous catheter (CVC). CVCs provide reliable venous access for delivery of chemotherapy and supportive care. This advantage is mitigated by an increased risk of bloodstream infections (BSIs). Despite the ubiquitous use of CVCs, few prospective studies have been conducted to address infection prevention strategies in pediatric oncology patients. Design: Prospective, crossover pilot study of a CVC team intervention versus standard care. Setting: Two inpatient oncology units in a metropolitan children’s hospital. Patients: A total of 41 patients/135 admissions for the experimental unit (EU) and 41/129 admissions for the control unit (CU). Methods: Patients received a CVC blood draw bundle procedure by a CVC registered nurse (RN) team member (experimental intervention: EU) for 6 months and by the assigned bedside RN (standard care: CU) for 6 months. Feasibility of implementing a CVC RN team; a significant difference in CVC-related BSIs between the team intervention versus standard care and risk factors associated in the development of CVC-related BSIs were determined. Results: There were 7 CVC-related BSIs/1238 catheter days in the EU group (5.7/1000 catheter days) versus 3 CVC-related BSIs/1419 catheter days in the CU group (2.1/1000 catheter days; P = .97). Selected risk factors were not significantly associated with the development of a CVC-related BSI. Conclusions: A CVC team in the care of pediatric oncology patients is feasible; however, a larger cohort will be required to adequately determine the effectiveness of the team reducing CVC-related BSIs.
- Published
- 2012
48. Factors affecting Fontan length of stay: Results from the Single Ventricle Reconstruction trial
- Author
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Jane W. Newburger, Jeremy T. Affolter, Victoria L. Pemberton, Christian Pizarro, Jeffrey P. Jacobs, Bryan H. Goldstein, Kurt R. Schumacher, Lynn A. Sleeper, Heather T. Henderson, Eric Gerstenberger, Timothy J. Bradley, Ismee A. Williams, Christopher J. Petit, Andrew M. Atz, Alan B. Lewis, Shaji C. Menon, J. William Gaynor, Carolyn Dunbar-Masterson, Nancy A. Pike, and Chitra Ravishankar
- Subjects
Male ,Pulmonary and Respiratory Medicine ,congenital, hereditary, and neonatal diseases and abnormalities ,medicine.medical_specialty ,Time Factors ,medicine.medical_treatment ,030204 cardiovascular system & hematology ,Fontan Procedure ,Medical Records ,Hypoplastic left heart syndrome ,Fontan procedure ,03 medical and health sciences ,0302 clinical medicine ,Risk Factors ,Interquartile range ,Internal medicine ,Hypoplastic Left Heart Syndrome ,medicine ,Humans ,Prospective Studies ,Child ,Prospective cohort study ,Blalock-Taussig Procedure ,Proportional Hazards Models ,business.industry ,Hazard ratio ,Length of Stay ,medicine.disease ,Surgery ,Shunt (medical) ,Treatment Outcome ,medicine.anatomical_structure ,030228 respiratory system ,Ventricle ,Child, Preschool ,Multivariate Analysis ,North America ,Deep hypothermic circulatory arrest ,Cardiology ,Female ,Cardiology and Cardiovascular Medicine ,business - Abstract
In the Single Ventricle Reconstruction trial, infants with hypoplastic left heart syndrome (HLHS) who received a right-ventricle-to-pulmonary-artery shunt (RVPAS) versus a modified Blalock-Taussig shunt (MBTS) had lower early postoperative mortality, but more complications at 14 months. We explored the effect of shunt type and other patient, medical, and surgical factors on postoperative length of stay (LOS) after the Fontan operation.Fontan postoperative course was ascertained from medical record review. Cox proportional hazards modeling was used to identify factors associated with LOS.Of 327 subjects who underwent Fontan, 323 were analyzed (1 death, 1 biventricular repair, 2 with missing data). Median age and weight at Fontan were 2.8 years (interquartile range [IQR]: 2.3, 3.4) and 12.7 kg (IQR: 11.4, 14.1), respectively. Fontan type was extracardiac in 55% and lateral tunnel in 45%; 87% were fenestrated. The RVPAS and MBTS subjects had similar LOS (median 11 days [IQR: 9, 18] vs 10 days [IQR: 9, 13]; P = .23). Independent risk factors for longer LOS were treatment center (P.01), LOS at stage II (hazard ratio [HR] 1.02 for each additional day; P.01), and pre-Fontan complications (HR 1.03 for each additional complication; P = .04). Use of deep hypothermic circulatory arrest at Fontan (HR 0.64; P = .02) was independently associated with shorter LOS. When center was excluded from the model, pre-Fontan complications and use of circulatory arrest were no longer significant; instead, older age at stage II (HR 1.08 for each additional month; P = .01) predicted longer LOS. In 254 subjects who had a pre-Fontan echocardiogram, at least moderate tricuspid regurgitation was independently associated with longer LOS, both with center (HR 1.72; P.01) and without center in the model (HR 1.49; P = .02).In this multicenter prospective cohort of subjects with HLHS, Norwood shunt type was not associated with Fontan LOS. Rather, global measures of earlier medical complexity indicate greater likelihood of longer LOS after the Fontan operation.
- Published
- 2016
49. 'Targeting to zero' in pediatric oncology: a review of central venous catheter-related bloodstream infections
- Author
-
Lynn V. Doering, Jack Needleman, Mary Ann Lewis, Nancy A. Pike, and Rita Secola
- Subjects
Adult ,medicine.medical_specialty ,Catheterization, Central Venous ,medicine.medical_treatment ,MEDLINE ,Disease ,Pediatrics ,Neoplasms ,medicine ,Pediatric oncology ,Humans ,Models, Nursing ,Intensive care medicine ,Child ,Cross Infection ,Oncology (nursing) ,business.industry ,Oncology Nursing ,equipment and supplies ,Pediatric Nursing ,Oncology nursing ,Catheter-Related Infections ,Nursing models ,Pediatric nursing ,business ,Central venous catheter ,Venous cannulation - Abstract
Reducing or eliminating hospital acquired infections is a national quality of care priority. The majority of the 12 400 children diagnosed with cancer each year require long-term intravenous access to receive intensive and complex therapies. These children are at high risk for infection by nature of their disease and treatment, which often involves use of a central venous catheter (CVC). Throughout the nation, nurses assume frontline responsibility for safe, quality CVC care to minimize the risk of potentially life-threatening infections. Substantial financial and human costs are associated with CVC-related bloodstream infections, including prolonged hospital lengths of stay and increased care required to treat these infections. The purpose of this review of the literature is to summarize existing adult and pediatric data on CVC-related bloodstream infections and explore nursing models of CVC care that may improve pediatric oncology patient outcomes.
- Published
- 2012
50. Feasibility of the use of a reliable and valid central venous catheter blood draw bundle checklist
- Author
-
Mary Ann Lewis, Lynn V. Doering, Jack Needleman, Nancy A. Pike, and Rita Secola
- Subjects
medicine.medical_specialty ,Catheterization, Central Venous ,Quality Assurance, Health Care ,medicine.medical_treatment ,Bacteremia ,Pilot Projects ,Phlebotomy ,Consistency (statistics) ,Neoplasms ,Content validity ,medicine ,Humans ,Medical physics ,Prospective Studies ,Intensive care medicine ,Child ,General Nursing ,Reliability (statistics) ,Cross Infection ,business.industry ,Oncology Nursing ,Reproducibility of Results ,Checklist ,Pediatric Nursing ,Inter-rater reliability ,Nursing Evaluation Research ,Bundle ,Catheter-Related Infections ,Evidence-Based Practice ,Practice Guidelines as Topic ,Feasibility Studies ,Guideline Adherence ,business ,Quality assurance ,Hospital Units ,Central venous catheter - Abstract
The primary objective of this study was to test the feasibility of creating a central venous catheter blood draw bundle checklist to ensure adherence to the evidence-based blood draw procedure. This study included establishing checklist reliability and validity and periodic observations in 2 inpatient pediatric oncology units. The findings provided support for the reliability and validity of this checklist based on content validity, test-retest reliability, interrater agreement, and internal consistency and reinforced the need for periodic observations to ensure consistency in proper central venous catheter blood draw procedures.
- Published
- 2012
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