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Sarwark, Anne E., Robert H. Anderson, and Diane E. Spicer. "Inferior and right-sided juxtaposition of the left atrial appendage with an unexpected type of inter-atrial communication." Cardiology in the Young 26, no. 1 (March 12, 2015): 179–82. http://dx.doi.org/10.1017/s1047951115000165.
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AbstractWe have re-investigated an unusual cardiac specimen with juxtaposition of the atrial appendages. The original description dates to 1962, when the autopsy was performed at the Children’s Memorial Hospital in Chicago, now Ann & Robert H. Lurie Children’s Hospital of Chicago. The heart was subsequently stored in the Farouk S. Idriss Cardiac Registry at the same institution. The specimen shows usual atrial arrangement, but with the morphologically left appendage juxtaposed in a rightward manner, passing behind the heart rather than through the transverse sinus so as to reach its location inferior to the morphologically right appendage. The heart also demonstrated an inter-atrial communication between the cavities of the juxtaposed left appendage and the morphologically right atrium. We provide a detailed description of the morphology, and provide images of this lesion, which to the best of our knowledge has not previously been described.
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Badawy, Sherif M., Amanda B. Payne, Mark J. Rodeghier, and Robert I. Liem. "Cardiopulmonary Fitness and Clinical Outcomes in Adults Followed in the Cooperative Study for Sickle Cell Disease." Blood 128, no. 22 (December 2, 2016): 1304. http://dx.doi.org/10.1182/blood.v128.22.1304.1304.
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Abstract Introduction: Cardiopulmonary fitness is significantly reduced among individuals with sickle cell disease (SCD). Cardiopulmonary fitness is also an important predictor of morbidity and all-cause mortality in the general population. However, the relationship between fitness and clinical outcomes in SCD has not been well studied. The objectives of this analysis were to: 1) determine the factors associated with fitness in a cohort of adults with SCD, and 2) evaluate the relationship of fitness to hospitalization for pain and acute chest syndrome (ACS) and overall mortality. We hypothesized that clinical factors such as age, sex, hemoglobin, SCD genotype and cardiopulmonary disease significantly affect fitness, and that poor fitness is a predictor of more frequent hospitalizations for pain and ACS and higher mortality in adults with SCD. Methods: A cohort of adults with SCD was constructed from participants enrolled in phase 2 of the Cooperative Study of Sickle Cell Disease (CSSCD) who underwent exercise testing (modified Balke treadmill protocol). Primary measure for fitness was total treadmill duration. Retrospective pain or ACS hospitalization rates were calculated using events in the 3 years prior to exercise testing. Mortality and prospective hospitalization rates for pain and ACS were calculated using events after exercise testing with a minimum 6 month follow-up. Results of pulmonary function testing (PFT), echocardiography, and laboratory testing within 3 years of exercise testing were included in our analysis. Standard descriptive analyses were performed (SPSS V24). Multivariable negative binomial and Cox proportional hazards models were constructed to evaluate the relationship of fitness to ACS and pain hospitalization rates and mortality, respectively. Multivariable linear models were constructed to determine factors associated with fitness. Results: A total of 223 participants had valid exercise testing data (64% female, 70% hemoglobin SS or S/b0 thalassemia, mean age 43.3 ± 7.5 years, mean hemoglobin 9.1 ± 2.2 g/dl, mean follow-up 2.7 ± 0.7 years after exercise testing). Participants completed a mean of 11.6 ± 5.2 min on the treadmill, with 87% completing ≥ 3 stages but only 17% completing all 10 stages. We categorized fitness into tertiles of treadmill duration (5.7 vs. 11.8 vs. 18.1 min, p < 0.001). Age (45.2 vs. 43.1 vs. 41.3 years, p = 0.007), baseline hemoglobin (8.5 vs. 9 vs. 9.8 g/dl, p = 0.003), as well as the proportion of females (77 vs. 71 vs. 40%, p < 0.001) and participants with abnormal PFT (58 vs. 35 vs. 39%, p = 0.008), differed significantly across fitness tertiles. Pain or ACS hospitalization rates during the 3 years prior to exercise testing were not significantly different across fitness tertiles. Using multivariable linear regression, male sex (β = 3.1, p < 0.001), lower age at exercise testing (β = -0.14, p = 0.003), and higher hemoglobin (β = 0.44, p = 0.049) were independently associated with higher fitness, with abnormal PFT trending toward significance (β = -1.28, p = 0.07). In this model, genotype, tricuspid regurgitant jet velocity (TRJV) ≥ 2.5 m/s, and pain and ACS hospitalization rates prior to exercise testing were not significantly associated with fitness. Using a negative binomial regression model, we found that fitness did not predict future pain or ACS episodes after adjustment for age, sex, genotype, hemoglobin and TRJV. Fitness also did not predict survival in our cohort (hazard ratio, 0.97; 95% CI [0.84, 1.13], p = 0.71), in which death was reported in only 9 participants. In our Cox regression model, male sex (HR 7.1; 95% CI [1.3, 38.9]; p = 0.02) and lower hemoglobin (HR 0.56; 95% CI [0.36, 0.88]; p = 0.01) were independent predictors of death, but age at exercise testing, abnormal PFT and TRJV ≥ 2.5 m/s were not. Conclusions: In adults with SCD, lower fitness is significantly associated with female sex, older age, lower hemoglobin and abnormal PFT. Fitness did not predict survival or future pain or ACS events in the CSSCD. Given that cardiopulmonary fitness remains an important predictor of all-cause mortality in the general population, larger scale prospective studies in SCD are needed to evaluate the impact of regular exercise on improving fitness, quality of life, clinical outcomes and mortality in this population. Disclosures Badawy: Ann & Robert H. Lurie Children's Hospital of Chicago: Employment; Ann & Robert H. Lurie Children's Hospital of Chicago: Research Funding; Salveo Health Communications LLC: Consultancy. Payne:National Center on Birth Defects and Developmental Disabilities: Employment. Liem:Ann & Robert H. Lurie Children's Hospital of Chicago: Employment; Ann & Robert H. Lurie Children's Hospital of Chicago: Research Funding; National Institute of Health: Research Funding.
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Butala, Anish, Jill Woodman, Alfred Rademaker, Yasmin Gosiengfiao, Jennifer Reichek, Joanna L. Weinstein, Elaine Morgan, Nobuko Hijiya, and David Walterhouse. "Recurrence detection in children with extra-cranial tumors at Ann & Robert H. Lurie Children's Hospital (LCH) of Chicago." Journal of Clinical Oncology 33, no. 15_suppl (May 20, 2015): e21012-e21012. http://dx.doi.org/10.1200/jco.2015.33.15_suppl.e21012.
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Higham, Christine, Yasmin C. Gosiengfiao, David Otto Walterhouse, Elaine Morgan, Jennifer Reichek, Elizabeth Jones Perlman, and Jill Woodman. "Wilms tumor outcome and biology in adolescent and young adult patients at Ann and Robert H. Lurie Children's Hospital of Chicago." Journal of Clinical Oncology 32, no. 15_suppl (May 20, 2014): e21016-e21016. http://dx.doi.org/10.1200/jco.2014.32.15_suppl.e21016.
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Tomita, Tadanori, and Paolo Frassanito. "Tumors of the superior medullary velum in infancy and childhood: report of 6 cases." Journal of Neurosurgery: Pediatrics 11, no. 1 (January 2013): 52–59. http://dx.doi.org/10.3171/2012.9.peds12236.
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Object The superior medullary velum (SMV) is a thin lamina of white matter located between the superior cerebellar peduncles horizontally and between the midbrain and cerebellum vertically. The SMV has not previously been described as the primary location of a posterior fossa tumor, although it can be secondarily invaded by a tumor from the cerebellum or quadrigeminal plate. This paper aims to define clinical and radiological features of tumors primarily arising from the SMV during childhood. Methods The authors observed 6 infants and children harboring neoplasms of the SMV who were treated at Ann & Robert Lurie Children's Hospital of Chicago (formerly Children's Memorial Hospital) in Chicago, Illinois. Pathological diagnosis of the neoplasms was an atypical teratoid/rhabdoid tumor (ATRT) in 5 patients, and a juvenile pilocytic astrocytoma (JPA) in the remaining child. The tumors were diagnosed during infancy in all patients, with ages ranging from 3 months to 10 months, except for the patient with a JPA (diagnosed at 5 years old). All patients presented with signs and symptoms of increased intracranial pressure due to obstructive hydrocephalus. Results Characteristic MRI features were noted, consistent with a mass in both the fourth ventricle and the cerebellomesencephalic fissure and quadrigeminal cistern, resulting in the circumferential displacement of the neural structures surrounding the SMV. The tumor was removed effectively in gross-total fashion through the occipital transtentorial approach in all patients. This approach offers a wide exposure of the region. However, all infants with ATRT suffered tumor dissemination and died between 4 and 11 months after diagnosis, in spite of radical resection and oncological treatment. The 1 child with JPA is alive and well 30 months after tumor resection. Conclusions To the best of the authors' knowledge, this is the first description in the literature that focuses on tumors originating from the SMV. This entity must be promptly recognized on preoperative radiological studies to carefully plan the subsequent surgical and clinical management.
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Chen, Diane, Marco Hidalgo, Robert Garofalo, Lisa K. Simons, and Jennifer Leininger. "209. Ann & Robert H. Lurie Children's Hospital of Chicago's Gender Development Clinic: Year 1 Descriptive Data." Journal of Adolescent Health 56, no. 2 (February 2015): S107. http://dx.doi.org/10.1016/j.jadohealth.2014.10.214.
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Jain, Priya G., Mary E. McBride, Anne Caliendo, and Walter Eppich. "Effects of Longitudinal Coaching on Relationships and Feedback Processes in Pediatric Subspecialty Fellowships—An Interpretive Description Study." Journal of Graduate Medical Education 14, no. 4 (August 1, 2022): 458–65. http://dx.doi.org/10.4300/jgme-d-21-00936.1.
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ABSTRACT Background Coaching in graduate medical education provides a facilitative approach to feedback as well as opportunities for residents and fellows to engage with feedback and develop individualized improvement goals. Objective To explore the roles and actions of successful coaches in longitudinal coaching relationships and how they enable feedback processes. Methods Using interpretive description methodology, we performed semi-structured interviews with pediatrics fellows (n=11), faculty coaches (n=9), and program directors (n=2) from 2 pediatric subspecialty fellowship training programs at Ann and Robert H. Lurie Children's Hospital of Chicago. Both training programs had previously implemented longitudinal clinical coaching programs. Interview questions aimed to explore the roles and impacts of coaches within a longitudinal coaching program. Interviews took place in 2019 and 2020. Results We identified 4 major actions to the coaching role in longitudinal coaching relationships: (1) establish the coach-fellow relationship; (2) prepare for the coaching conversation; (3) facilitate feedback dialogue; and (4) serve as the go-to person to raise uncomfortable issues. Additionally, nearly all participants expressed support for a longitudinal coaching program to support fellows' growth and development of personalized learning goals. Conclusions By fulfilling these 4 key aspects to the coaching role, coaches in longitudinal relationships with coachees enable feedback processes.
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Hebal, Ferdynand, and Susanna McColley. "2206 Chicago Kids Advisory Board: A novel approach to engaging adolescent students in pediatric clinical research." Journal of Clinical and Translational Science 2, S1 (June 2018): 65. http://dx.doi.org/10.1017/cts.2018.239.
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OBJECTIVES/SPECIFIC AIMS: Stakeholder engagement has been proposed to help realign clinical and translational research with the needs of clinicians, patients, and policymakers. Increasingly, funders and researchers seek to partner with stakeholders to inform study design, execution and dissemination of results. Kids and families Impacting Disease through Science (KIDS) is a program of the American Academy of Pediatrics that seeks to engage youth in clinical research. United States KIDS programs participate in International Children’s Advisory Network activities. The Chicago KIDS Advisory Board program at Walter Payton College Preparatory School, a Chicago Public School, was initiated in 2015 to foster and develop interest in careers in science, research and healthcare and provide youth perspectives to academic and industry researchers on the design and development of pediatric research studies. This project engaged youth advisors in creation and evaluation of a video explaining clinical research and informed consent for Ann & Robert H. Lurie Children’s Hospital, a clinical partner of the Northwestern University Clinical and Translational Sciences Institute. METHODS/STUDY POPULATION: The Payton program advisory board sessions are 1.5hr interactive seminars held on 1–2 school days each month. During the 2016–2017 school year, students participated in 3 stakeholder sessions, led by Lurie Children’s hospital researchers, to advise development of a script, storyboards, and ultimately an animated video that informs children and families about participation in clinical research to aid in the decision-making process. Qualitative research methods were used to examine attitudes towards clinical research and assess the video on content objectives, clarity of concept, and appropriateness for a pediatric audience. Following production, students from the 2017–2018 advisory board viewed the final video and presurvey and postsurvey were administered to assess the effect of video on the comprehension of 8 key concepts of informed consent on a 5-point Likert scale. The Wilcoxon signed-rank test was used to compare median pretest and post-test ranks. Results of this analysis were reviewed in seminar and students provided written contribution to this abstract. RESULTS/ANTICIPATED RESULTS: In total, 11 Walter Payton high school students participated in video development and 27, who were naïve to development, participated in the pre and post evaluation sessions. Students ranged from Freshman to Seniors and reflected the diverse ethnic and racial background of Chicago. A positive change from pre to post-test survey was observed in all questions presented assessing comprehension of key concepts of informed consent. The median post-test ranks were statistically significantly higher than the median pre-test ranks for all questions (p<0.01 in all). DISCUSSION/SIGNIFICANCE OF IMPACT: Chicago KIDS youth advisors were engaged in all aspects of the design of the research tool and gained experience in stakeholder contribution from study design to evaluation and publication. The students will next be involved in the design of a prospective randomized study to test the efficacy of the video compared with standard recruitment and consent practices. Given the difficulty of recruiting youth for clinical trials, development of effective engagement practices in is critically important. Our findings demonstrate the feasibility of utilizing youth advisors in a public school based setting.
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Merchant, Mehboob, Reggie E. Duerst, Alfred Rademaker, and Morris Kletzel. "Increased Transplant Related Mortality and Poor Donor Cell Chimerism in African American Children Undergoing Umbilical Cord Blood Transplantation. Institutional Experience at Lurie Children's Hospital of Chicago." Biology of Blood and Marrow Transplantation 20, no. 2 (February 2014): S235—S236. http://dx.doi.org/10.1016/j.bbmt.2013.12.395.
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Heiferman, Daniel M., Hasan R. Syed, Daphne Li, Brian D. Rothstein, Ali Shaibani, and Tadanori Tomita. "Resection of an Embolized Cirsoid Aneurysm With Intracranial Venous Drainage: 2-Dimensional Operative Video." Operative Neurosurgery 16, no. 3 (October 5, 2018): E94. http://dx.doi.org/10.1093/ons/opy303.
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Abstract Cirsoid aneurysms, also known as scalp arteriovenous malformations (AVM), are rare congenital extracranial vascular anomalies that often present as an enlarging pulsatile scalp mass. A 14-yr-old male presented with a pulsatile scalp lesion that was first noticed 3 yr prior and had progressively enlarged. No history of trauma was reported. MRI demonstrated a 4 cm wide and 2 cm tall nidus and catheter angiography was performed to further define the vascular supply and drainage. The patient underwent transvenous endovascular embolization followed by surgical excision via a bicoronal incision, as shown in this operative video. Care was taken to identify, cauterize, and transect feeding vessels from the superficial temporal, supratrochlear, and supraorbital arteries circumferentially to completely devascularize and resect the galeal nidus from overlying scalp tissue and underlying pericranium. Previously unreported in the literature, transosseous emissary veins partially draining the lesion were noted on angiography and were waxed thoroughly during surgery. Six-month follow-up examination demonstrated a well-healed incision without evidence of AVM recurrence. The unique venous drainage of this cirsoid aneurysm highlights the value of diagnostic angiography to fully characterize these rare and complex vascular lesions prior to pursuing definitive treatment. IRB approval was obtained from the Ann & Robert H. Lurie Children's Hospital of Chicago Institutional Review Board (IRB #2018-1799). The IRB waives the requirement of obtaining informed consent for this study in accordance with 45 CFR 46.116(d).
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Danner-Koptik, Karina, Morris Kletzel, and Kimberley J. Dilley. "Exostoses as a Long-Term Sequela After Pediatric Hematopoietic Progenitor Cell Transplantation: Potential Causes and Increase Risk of Secondary Malignancies from Ann & Robert H. Lurie Children's Hospital of Chicago." Biology of Blood and Marrow Transplantation 19, no. 8 (August 2013): 1267–70. http://dx.doi.org/10.1016/j.bbmt.2013.05.015.
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Purnell, Chad A., Rachel Skladman, Tord D. Alden, Julia F. Corcoran, and Jeffrey C. Rastatter. "Nasal dermoid cysts with intracranial extension: avoiding coronal incision through midline exposure and nasal bone osteotomy." Journal of Neurosurgery: Pediatrics 25, no. 3 (March 2020): 298–304. http://dx.doi.org/10.3171/2019.9.peds19132.
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OBJECTIVEUp to 10% of midline nasal dermoid cysts have intracranial extension. Previous techniques of excision include frontal and frontonasal craniotomies via a coronal approach, combined with a direct cutaneous excision of the dermoid cyst. While the coronal incision allows for wide visualization, it carries significant risks of transfusion, blood loss, and scarring. The authors present an alternative technique in which access is gained through a midline extension of the dermoid cyst excision that provides direct access for a keyhole frontal craniotomy.METHODSThe authors utilize a nasal bone osteotomy, pericranial flap, and keyhole-type craniotomy performed through a nasal midline incision for the treatment of nasal dermoid cysts with intracranial extension. They performed a retrospective chart review of all patients with nasal dermoid cysts treated at the Ann & Robert H. Lurie Children’s Hospital of Chicago from 2009 to 2017. Patient demographic data, operative data, and in- and outpatient complication data were collected.RESULTSIn 10 patients with cyst extension near or into the intracranial cavity (7 with true intracranial extension), the nasal osteotomy technique was performed. The mean blood loss was 13 ml, with a 0% transfusion rate. The mean length of inpatient stay was 1 day. A durotomy was made and repaired as part of the dermoid cyst dissection in 3 patients. One patient underwent intraoperative placement of a lumbar drain. The mean operative time was 228 minutes. There were no intraoperative or postoperative complications, including the need for a reoperation. No patients had any long-term complications, and no patients have had dermoid cyst recurrence. The appearance of the scar was acceptable in all cases.CONCLUSIONSThe midline approach to nasal dermoid cysts with intracranial extension is safe and results in limited blood loss, short operative times, and short lengths of inpatient hospital stay. This is a viable technique for the treatment of this challenging pathology.
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Fölster-Holst, Regina. "Progressive Pigmentpurpura: Welche Vorteile Vitamin C oder Rutosid in der Behandlung bieten." Kompass Dermatologie 8, no. 3 (2020): 117–18. http://dx.doi.org/10.1159/000509560.
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Background: Data regarding the course and treatment of pigmented purpuric dermatoses (PPD) in the paediatric population are limited. Although treatments for pigmented purpura are not well established, vitamin C and rutoside have been reported to be an effective treatment option and are widely utilized. Objective: To assess the clinical course and utility of vitamin C and rutoside in paediatric patients with PPD treated at Ann & Robert H. Lurie Children’s Hospital of Chicago between 2008 and 2018. Methods: A retrospective review of all children with PPD managed at our hospital between 2008 and 2018 was performed. Additional follow-up was obtained via telephone interviews. Results: A total of 101 patients met inclusion criteria. The female: male ratio was 1.3 : 1, and the median age at diagnosis was 8.8 years (IQR, 5.7–12.9). Median follow-up was 7.13 months (IQR, 3–17.4). The most common PPD subtypes were lichen aureus (43%) and Schamberg (34%). Fifty-three (52%) patients had evaluable follow-up documentation via their medical record or phone questionnaire. Twenty-eight patients were treated with vitamin C or rutoside or combination therapy. Twenty-five patients received no treatment. Clearance of the rash was noted in 24 (45.3%) patients overall, including 10 (42%) patients in the treated group and 14 (58%) patients in the untreated group. Recurrence was noted in seven (13.2%) patients. Treatment with vitamin C and/or rutoside was well tolerated without side effects. None of the patients were subsequently diagnosed with vasculitis, coagulopathy or cutaneous T-cell lymphoma. Conclusion: Pigmented purpuric dermatosis in children is a benign disorder with high rates of complete resolution. Treatment with vitamin C and rutoside is well tolerated, but in this cohort, there did not appear to be an advantage over watchful waiting without therapy.
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Pozin, Jacob J., Ashley L. Devonshire, Kevin Tom, Melanie Makhija, and Anne Marie Singh. "Legume and sesame oral food challenge outcomes." Journal of Food Allergy 3, no. 2 (September 1, 2021): 42–49. http://dx.doi.org/10.2500/jfa.2021.3.210009.
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Background: Legume and sesame are emerging food allergens. The utility of specific immunoglobulin E (sIgE) testing to predict clinical reactivity to these allergens is not well described. Objective: To describe clinical outcomes and sIgE in sesame and legume oral food challenges (OFC). Methods: We performed a retrospective review of 74 legume and sesame OFCs between 2007 and 2017 at the Ann and Robert H. Lurie Children’s Hospital of Chicago. Clinical data, OFC outcome, and sIgE to legume and sesame were collected. Receiver operating characteristic curves and logistic regression models that predicted OFC outcome were generated. Results: Twenty-eight patients (median age, 6.15 years) passed legume OFC (84.9%), and 25 patients (median age, 5.91 years) passed sesame OFC (61.0%). The median sIgE to legume was 1.41 kUA/L and, to sesame, was 2.34 kUA/L. In patients with failed legume OFC, 60.0% had cutaneous symptoms, 20.0% had gastrointestinal symptoms, and 20.0% had anaphylaxis. Of these reactions, 80.0% were controlled with antihistamine alone and 20.0% required epinephrine. In patients for whom sesame OFC failed, 50.0% had cutaneous symptoms, 12.5% had gastrointestinal symptoms, and 37.50% had anaphylaxis. Of these reactions, 6.3% required epinephrine, 31.3% were controlled with diphenhydramine alone, and 63.50% required additional epinephrine or prednisone. Conclusion: Most OFCs to legumes were passed and reactions to failed legume OFCs were more likely to be nonsevere. Sesame OFC that failed was almost twice as likely compared with legume OFC that failed, and reactions to sesame OFC that failed were often more severe. Sesame sIgE did not correlate with OFC outcome.
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Merchant, Mehboob, Reggie E. Duerst, Alfred Rademaker, and Morris Kletzel. "Addition Of Thiotepa To The Conditioning Regimen Significantly Improves Transplant Outcomes In Children Undergoing Cord Blood Transplantation For Non-Malignant Disease. Lurie Children's Hospital Of Chicago's Experience." Biology of Blood and Marrow Transplantation 20, no. 2 (February 2014): S234—S235. http://dx.doi.org/10.1016/j.bbmt.2013.12.394.
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Parzen-Johnson, Simon, Shan Sun, Ami B. Patel, Tonya L. Scardina, Seema K. Shah, and Sameer J. Patel. "Sociodemographic Comparison of Children With High-risk Medical Conditions Referred vs Identified Through Screening Plus Outreach for COVID-19 Therapeutics." JAMA Network Open 5, no. 12 (December 28, 2022): e2248671. http://dx.doi.org/10.1001/jamanetworkopen.2022.48671.
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ImportanceMinoritized groups are less likely to receive COVID-19 therapeutics, but few studies have identified potential methods to reduce disparities.ObjectiveTo determine whether screening plus outreach, when compared with referral alone, increases identification of vulnerable pediatric patients at high risk for severe disease eligible for COVID-19 therapeutics from low-resourced communities.Design, Setting, and ParticipantsA retrospective cohort study of COVID-19 medication allocation between January 1, 2022, and February 15, 2022, at Lurie Children’s Hospital, a quaternary care children’s hospital, in Chicago, Illinois. The cohorts were pediatric patients referred for COVID-19 therapeutics or with a positive SARS-CoV-2 polymerase chain reaction within the hospital system followed by outreach. Screening involved daily review of positive cases of SARS-CoV-2, followed by medical record review for high-risk conditions, and communication with clinicians and/or patients and families to offer therapy.ExposuresDiagnosis of COVID-19.Main Outcomes and MeasuresThe primary measure was difference in child opportunity index (COI) scores between the 2 cohorts. Secondary measures included presence and duration of symptoms at diagnosis, medication uptake, race and ethnicity, insurance type, qualifying medical condition, sex, primary language, and age.ResultsOf 145 total patients, the median (IQR) age was 15 (13-17) years, and most were male (87 participants [60.0%]), enrolled in public insurance (83 participants [57.2%]), and members of minoritized racial and ethnic groups (103 participants [71.0%]). The most common qualifying conditions were asthma and/or obesity (71 participants [49.0%]). From 9869 SARS-CoV-2 tests performed, 94 eligible patients were identified via screening for COVID-19 therapeutics. Fifty-one patients were identified via referral. Thirty-two patients received medication, of whom 8 (25%) were identified by screening plus outreach alone. Compared with referred patients, patients in the screening plus outreach group were more likely to have moderate, low, or very low COI composite scores (70 patients [74.5%] vs 27 patients [52.9%]); public insurance (65 patients [69.1%] vs 18 patients [35.3%]); and asthma or obesity (60 patients [63.8%] vs 11 patients [21.6%]). Patients in the referral group were more likely to be non-Hispanic White (23 patients [45.1%] vs 19 patients [20.2%]) and receive medication (24 patients [47.1%] vs 8 patients [8.5%]).Conclusions and RelevanceCompared with referral patients, screening plus outreach patients for COVID-19 medications were more socially vulnerable, with lower COI scores, and more likely to have asthma or obesity. Future studies should investigate communication strategies to improve uptake of these medications after outreach.
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Newman, Alexander M., Leila C. Posch, Lauren Gianchetti, Elizabeth B. Rand, Saeed Mohammad, Kevin J. Downes, and William J. Muller. "1396. Live Virus Vaccination Following Pediatric Liver Transplantation: Results from Two Academic Children’s Hospitals." Open Forum Infectious Diseases 7, Supplement_1 (October 1, 2020): S707—S708. http://dx.doi.org/10.1093/ofid/ofaa439.1578.
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Abstract Background Guidelines for immunization following solid organ transplantation discourage live virus vaccination (LVV) in most recipients. Single-center studies support LVV as safe and effective in orthotopic liver transplant (OLT) recipients on steroid-free immunosuppression (IS). We retrospectively evaluated LVV after OLT at 2 pediatric hospitals. Methods Records from OLT recipients between Jan 2007 and Dec 2017 at Lurie Children’s (Chicago) and Children’s Hospital of Philadelphia were reviewed. Patients who underwent OLT at either institution, had ≥ 2 years of follow up, and had documentation of vaccination prior to OLT were included. Adverse events (AEs) within two weeks of receipt of LVV were captured. Factors that might influence the selection of patients for LVV were reviewed, including choice, dose, frequency, and levels of IS medications. IS in non-vaccinated patients was compared to vaccinated patients at two year post-transplant follow-up in both groups using Chi-Square and T-test. Results Data from 249 patients met inclusion criteria. Varicella zoster (VZV) vaccine was given at least once to 92 patients post-transplant, and MMR to 91 (Table 1). Compared to patients who were re-vaccinated after transplant, those who received their first LVV after OLT were transplanted at a younger age (0.8 v 2.2 years) and received LVV sooner post-OLT (649 v 907 days). AEs were rare for either LVV: 2 experienced injection site reaction, 2 localized rash, and 1 had fever. One recipient experienced worsening rejection one month after MMR and received IV steroids and increased IS, but had no clinical findings concerning for viral infection from vaccination. Most LVV recipients were on a single IS agent both at time of LVV and 2 year post-OLT (Table 2), with tacrolimus the most frequent agent. Compared to those that did not received LVV post-OLT, those that did were on one IS agent more often. Tacrolimus levels were similar among patients receiving LVV post-OLT compared with those who did not. Table 1 Table 2 Conclusion In a series of pediatric OLT recipients, post-OLT LVV was generally safe and well tolerated. Patients who received LVV post-OLT were more often on one IS agent at 2 year follow up compared to those who did not. Our study supports prospective efforts to define guidelines for patients who may safely receive LVV after OLT. Disclosures Kevin J. Downes, MD, Merck, Inc. (Grant/Research Support)
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Loomba, Rohit S., Justin T. Tretter, Timothy J. Mohun, Robert H. Anderson, Scott Kramer, and Diane E. Spicer. "Identification and Morphogenesis of Vestibular Atrial Septal Defects." Journal of Cardiovascular Development and Disease 7, no. 3 (September 10, 2020): 35. http://dx.doi.org/10.3390/jcdd7030035.
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Background: The vestibular atrial septal defect is an interatrial communication located in the antero-inferior portion of the atrial septum. Reflecting either inadequate muscularization of the vestibular spine and mesenchymal cap during development, or excessive apoptosis within the developing antero-inferior septal component, the vestibular defect represents an infrequently recognized true deficiency of the atrial septum. We reviewed necropsy specimens from three separate archives to establish the frequency of such vestibular defects and their associated cardiac findings, providing additional analysis from developing mouse hearts to illustrate their potential morphogenesis. Materials and methods: We analyzed the hearts in the Farouk S. Idriss Cardiac Registry at Ann and Robert H. Lurie Children’s Hospital in Chicago, IL, the Van Mierop Archive at the University of Florida in Gainesville, Florida, and the archive at Johns Hopkins All Children’s Heart Institute in St. Petersburg, Florida, identifying all those exhibiting a vestibular atrial septal defect, along with the associated intracardiac malformations. We then assessed potential mechanisms for the existence of such defects, based on the assessment of 450 datasets of developing mouse hearts prepared using the technique of episcopic microscopy. Results: We analyzed a total of 2100 specimens. Of these, 68 (3%) were found to have a vestibular atrial septal defect. Comparable defects were identified in 10 developing mouse embryos sacrificed at embryonic data 15.5, by which stage the antero-inferior component of the atrial septum is usually normally formed. Conclusion: The vestibular defect is a true septal defect located in the muscular antero-inferior rim of the oval fossa. Our retrospective review of autopsied hearts suggests that the defect may be more common than previously thought. Increased awareness of the location of the defect should optimize its future clinical identification. We suggest that the defect exists because of failure, during embryonic development, of union of the components that bind the leading edge of the primary atrial septum to the atrioventricular junctions, either because of inadequate muscularisation or excessive apoptosis.
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Molinaro, Laura Hinkes, and Wendy Stellpflug. "Team Approach for Education and Support of Postoperative Pediatric Cerebellar Mutism Syndrome in the Preoperative and Immediately Postoperative Phase." Perspectives of the ASHA Special Interest Groups 4, no. 1 (February 26, 2019): 97–99. http://dx.doi.org/10.1044/2018_pers-sig2-2018-0024.
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Purpose Postoperative pediatric cerebellar mutism syndrome (CMS) is a known complication following surgical resection of posterior fossa tumors. However, minimal information exists describing the progression of the syndrome and how to best support these patients. At Ann & Robert H. Lure Children's Hospital of Chicago, the brain tumor team has been fortunate enough to work together for years. Throughout the time that this particular team has been collaborating, a typical protocol has been developed for children at most risk for postoperative pediatric CMS, refined with each patient experience, to the current model. Much of what has been written about postoperative pediatric CMS (and varying terminology) has focused on potential risk factors, surgical approach, and causes, as well as definitively defining the syndrome. We would like to focus on the impact the mutism has on this constellation of symptoms. We would like to focus on the patient and family and how we as caregivers can prepare, educate, and support the family throughout this difficult diagnosis and early management of mutism. Conclusions There is much work to be done in describing and quantifying postoperative pediatric CMS. In the care of children with pediatric brain tumors in the preoperative and immediately postoperative phase, a team approach is paramount. When discussing expectations following surgery, consistent message and communication of hope are essential.
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Sharma, Shelly, Reid Colliander, and Michael DeCuypere. "SURG-10. Pediatric PF-A ependymoma: a case series of cytogenetics and progression-free survival." Neuro-Oncology 24, Supplement_1 (June 1, 2022): i144. http://dx.doi.org/10.1093/neuonc/noac079.528.
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Abstract Ultra-high risk PF-A ependymoma, defined as 6q chromosome deletion in the setting of 1q gain, represents a biologically unique entity. These tumors are associated with significantly worse progression-free survival and 6q loss is an independent predictor of overall survival. Here, we present cytogenetics and progression-free survival from all PF-A ependymomas diagnosed at Lurie Children’s Hospital of Chicago over a 10-year period (2011 and 2021). Twelve patients were identified with the diagnosis of PF-A ependymoma (42% males, average age at diagnosis 5.75 years) during the study period. Four patients demonstrated gain of 1q on methylation profiling. Two patients with a gain of 1q also had a deletion of 6q, carrying the ultra high-risk designation. All patients underwent surgical resection and post-operative radiation therapy. Patients who received chemotherapy had a significant increase in overall number of surgical resections (p-value < 0.0001). Patients without 1q gain had an average of 2.1 surgeries, while patients with 1q gain had an average 2.75 surgeries. Patients with 1q gain and 6q deletion had an average of 3.5 surgeries. All patients with 1q gain had recurrence of their tumor, compared to 38% of patients without 1q gain. In this series, progression-free survival for the PF-A without 1q gain, 1q gain, and 1q gain with 6q deletion cohort was 27.9, 18.4, and 19.5 months, respectively. The most common complications were radiation toxicity and cerebellar dysfunction (ataxia, dysmetria, and gait imbalance). Not surprisingly, complications were more common in those patients undergoing a greater number of subsequent resections. All PF-A ependymomas should be evaluated for 1q gain and 6q deletion, which can be reliably ascertained using cytogenetic markers in routine clinical use. In this series, 1q gain was associated with a decrease in progression-free survival. Only 2 patients were designated ultra high-risk based on cytogenetic analysis.
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Mack, Joana Marie, Pawel Wiczling, Joseph Moen, Guolian Kang, Robert I. Liem, Julie A. Panepinto, Gregory Kearns, Kathleen A. Neville, and Jeremie H. Estepp. "Pharmacokinetics in Children with Sickle Cell Anemia Following Single Dose Versus Chronic Treatment with Hydroxyurea." Blood 128, no. 22 (December 2, 2016): 1314. http://dx.doi.org/10.1182/blood.v128.22.1314.1314.
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Abstract Introduction: Hydroxyurea (HU) reduces vaso-occlusive complications, hospitalizations and transfusion requirements in children with sickle cell anemia (SCA; HbSS and HbSβ0thalassemia). Despite linear pharmacokinetics (PK) and apparent dose dependency for HU effect, there remains unexplained large inter-individual variability in drug response. To better understand this variability, we conducted a PK study of HU to assess: 1) effect of multiple dosing on PK of HU, and 2) explore the utility of using a single post-dose HU plasma concentration as a basis for therapeutic drug monitoring. Methods: Data from two prospective trials, "Pharmacokinetics of Liquid Hydroxyurea in Pediatric Patients with Sickle Cell Anemia" (NCT01506544) and "Single-Dose (SD) and Steady-State (SS) Pharmacokinetics of Hydroxyurea in Children and Adolescents with Sickle Cell Disease", were utilized for this analysis. Participants were children (≤18 years) with HgbSS and HbSβ0 thalassemia from 8 medical centers in the U.S. One cohort of patients had never been treated with HU and the second cohort had been treated with HU for at least ≥3 months at a stable dose. All participants received a single oral dose of HU and plasma PK samples were collected pre-dose, then at 15, 30, 45, and 60 minutes, and 1.5, 2, 4, 6, and 8 hours after study drug was administered under direct supervision. HU was quantitated from plasma and urine using a validated HPLC method. PK parameters for HU were determined from each patient using a standard model-independent approach (apparent Cmax observed from plasma concentration vs time data; AUC determined via a log-linear approach). PK parameters were compared using parametric (two-sample t-test) or nonparametric (Wilcoxon Rank Sum test) as appropriate based on normality of distribution. The coefficient of determination was used to determine the most predictive relationship between post-peak HU plasma concentrations and systemic exposure (AUC). The significance limit accepted for all statistical analyses was a = 0.05. Results: A complete plasma HU PK profile was obtained for 59 children. Participants with PK after the first dose (n=7, HUfirst) group received an average dose of 17.9 ±2.6 mg/Kg of HU whereas those with PK after multiple doses (n=52, HUchronic group) received an average dose of 23.8 ±5.1 mg/Kg (p < 0.01). Absorption of HU was rapid in both groups with a time to maximal plasma concentration (Tmax) of 0.9 ±0.58 hours in the HUfirst group and 0.8 ±0.47 hours in the HUchronic group (p=0.68). The mean dose/weight- normalized Cmax in the HUfirst group (2.0 mg/L per 1 mg/kg dose) was 1.4 fold higher than in the HUchronic (1.4 mg/L per 1 mg/kg) (p=0.03). A similar relationship was observed in mean dose/weight-normalized AUCinf, where the HUfirst group was 1.3 fold higher than in the HUchronic group (5.9 vs 4.6 mg/L*hr per 1 mg/kg; p=0.002). Weight-normalized mean apparent oral clearance (Cl/F) was significantly lower in the HUfirst cohort (0.17 L/hr/kg) as compared to the HUchronic (0.23 L/hr/kg) (p<0.001). The mean apparent volume of distribution (Vz/F) for the HUfirst cohort (0.52 L/kg) was not significantly different than that in the HUchronic cohort (0.61 L/kg) (Table 1). As suggested by data in Figure 1a, the apparent mean elimination half-life did not vary between the groups (e.g., 2.1 hr in HUfirst vs. 2.3 hr in HUchronic). Finally, between 45 minutes post-dose and through the last blood sampling point, the 4 hour post-dose concentration most accurately predicted the AUC of HU (r2= 0.78) (Figure 1b). Conclusion: Weight and dose-normalized PK parameters for HU suggest potential differences in the bioavailability of the drug with multiple dosing. This finding may contribute to the known wide variability in HU response. Finally, a single 4 hour post-dose HU plasma concentration adequately predicts systemic exposure (AUC) to HU and thus, could provide an approach to facilitate dose individualization / optimization. Mean hydroxyurea (HU) concentration (μg/mL) per time (hour) profiles in children on chronic HU therapy (HUchronic) and children who are receiving the first dose of drug (HUfirst). Error bars represent standard deviation of the mean.Figure 1A. The coefficient of determination (R2) of the linear correlation between plasma concentration (DV) and observed AUCinf at 4.0 hours in all children (HUtreated and HUfirst) to therapy. Mean hydroxyurea (HU) concentration (μg/mL) per time (hour) profiles in children on chronic HU therapy (HUchronic) and children who are receiving the first dose of drug (HUfirst). Error bars represent standard deviation of the mean.Figure 1A. The coefficient of determination (R2) of the linear correlation between plasma concentration (DV) and observed AUCinf at 4.0 hours in all children (HUtreated and HUfirst) to therapy. Figure 1B Figure 1B. Disclosures Liem: National Institute of Health: Research Funding; Ann & Robert H. Lurie Children's Hospital of Chicago: Research Funding; Ann & Robert H. Lurie Children's Hospital of Chicago: Employment. Estepp:Daiichi Sankyo: Membership on an entity's Board of Directors or advisory committees, Research Funding; Global Blood Therapeutics: Membership on an entity's Board of Directors or advisory committees, Research Funding; Pfizer: Research Funding; National Institute of Health: Research Funding.
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Li, Daphne, Daniel M. Heiferman, Hasan R. Syed, João Gustavo Santos, Robin M. Bowman, Arthur J. DiPatri, Tadanori Tomita, Nitin R. Wadhwani, and Tord D. Alden. "Pediatric primary spinal atypical teratoid rhabdoid tumor: a case series and review of the literature." Journal of Neurosurgery: Pediatrics 24, no. 3 (September 2019): 267–83. http://dx.doi.org/10.3171/2019.4.peds19113.
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Atypical teratoid rhabdoid tumors (ATRTs) are rare malignant central nervous system tumors, commonly occurring before 3 years of age. Median overall survival (OS) of patients with these tumors is about 1 year, despite aggressive multimodal therapy. Pediatric primary spinal ATRTs are even more rare, with fewer than 50 cases reported. The authors present a series of four patients who were treated at Ann and Robert H. Lurie Children’s Hospital of Chicago in the period from 1996 to 2017.These patients, with ages 2–11 years, presented with pain and a decline in motor functions. They were found to have lesions in the lumbar, thoracic, and/or cervical spine. One patient’s tumor was intramedullary with exophytic components, while another patient’s tumor had both intra- and extradural components. All patients underwent resection followed by chemotherapy (systemic and intrathecal). Two patients had fractionated radiation therapy and one had an autologous stem cell transplant. Three patients are known to be deceased (OS 8.5–45 months). The fourth patient was in remission 19 years after her initial diagnosis. To the authors’ knowledge, this is the largest series of pediatric primary spinal ATRTs documented at a single institution. These cases illustrate a variety of presentations of spinal ATRT and add to the body of literature on this aggressive pathology.A systematic MEDLINE search was also conducted using the keywords “atypical teratoid rhabdoid tumor,” “pediatric spinal rhabdoid tumor,” and “malignant rhabdoid tumor spine.” Reports were included for patients younger than 21 years, without evidence of intracranial or systemic disease at the time of diagnosis. Clinical characteristics and outcomes of the four institutional cases were compared to those in the literature. This review yielded an additional 48 cases of primary pediatric spinal ATRTs reported in the English-language literature. Patients (ages 2 months to 19 years) presented with symptoms of pain, regression of motor function, and spinal cord compression. The majority of tumors were intradural (14 extramedullary, 8 intramedullary, 1 both). Eleven cases in the literature described tumors limited to extradural structures, while 10 tumors involved the intra- and extradural spine. Four reports did not specify tumor location. Although rare, spinal ATRT should be considered in the differential diagnosis of pediatric patients presenting with a new spinal mass.
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Tse, William T., Jessica Ward, Jennifer Schneiderman, Sonali Chaudhury, Ramsay Fuleihan, Reggie Duerst, and Morris Kletzel. "Robust Immune Reconstitution in Children with Severe Primary Immunodeficiency after Reduced-Intensity Conditioning Hematopoietic Stem Cell Transplantation." Blood 124, no. 21 (December 6, 2014): 3923. http://dx.doi.org/10.1182/blood.v124.21.3923.3923.
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Abstract Hematopoietic stem cell transplantation (HSCT) is a potentially curative therapy for severe primary immunodeficiency diseases (PID), but it is still unclear what is the optimal transplant approach. To help answer this question, the stem cell transplant team at Ann & Robert H. Lurie Children's Hospital of Chicago (formerly Children's Memorial Hospital) evaluated the risks and benefits of a reduced-intensity conditioning (RIC) transplant approach for treatment of severe PID. Between 2000 and 2013, 42 children with severe PID were treated with allogeneic HSCT following a RIC regimen consisting of fludarabine (30mg/m2/day x 6), rabbit anti-thymocyte globulin (once daily x 4), and intravenous busulfan (once daily x 2). Total busulfan exposure, as measured by the plasma concentration-time area-under-the-curve (AUC), was targeted individually for each patient at 4000 µM*min/day in an earlier cohort (n=14), and 5000 in a later cohort (n=28). Patients were treated in an ambulatory setting and were hospitalized only for specific medical or social reasons. There were 31 male and 11 female patients. The median age at the time of transplant was 8.2 months (range 1 month-17.4 years). The median weight was 7.6 kg (range 2.5-81.5 kg). Patients were diagnosed with severe combined immunodeficiency (n=17), Wiscott-Aldrich syndrome (n=7), hyper-IgM syndrome (n=5), major histocompatibility complex II deficiency (n=3), X-linked lymphoproliferative disease (n=3), NEMO syndrome (n=2), Omenn syndrome, reticular dysgenesis, Chediak-Higashi syndrome, IPEX (immune dysregulation, polyendocrinopathy, enteropathy, X-linked) syndrome, and IPEX-like syndrome (n=1 each). Fourteen patients had related donors and 28 had unrelated donors. Twenty-eight patients received peripheral blood HSC, 12 received cord blood, and 2 received bone marrow as the source of HSC. All patients tolerated the conditioning regimen with minimal nausea, vomiting, or pain. No severe mucositis, sinusoidal occlusion syndrome, seizure, grade III/IV acute GVHD or extensive chronic GVHD were seen. In most patients, the engraftment was rapid, with ANC ≥ 500 at a median of +15 days post-transplant, following a nadir at day +10 with a median ANC nadir of 60. In the AUC 4000 cohort, 2 patients (14%) developed primary graft failure and 2 patients (14%) developed immune-mediated secondary graft failure; in the AUC 5000 cohort, 2 patient (7%) developed primary graft failure and 1 patient developed secondary graft failure after primary EBV infection. Two patients died from complications associated with primary graft failure, 2 from complications caused by EBV infections, and 2 from complications related to their underlying diseases in the early post-transplant period. Kaplan–Meier analysis shows overall and event-free survival rates of 81.9% and 73.6%, respectively, at a median follow-up of 4.3 years. Most engrafted patients have stable donor chimerism over time. At a mean of 3.5 years post-transplant, the median donor chimerism in total white blood cells was 97% and the first and third quartiles were 77% and 99%, respectively. Engrafted patients demonstrated robust immune reconstitution with B and T cell counts normalized by 3 months and 9 months post-transplant, and CD45RA+ naive T cells by 1 year. Between 1 to 4 years post-transplant, the median absolute CD4+, CD8+ and CD19+ cell counts were 1388, 976 and 720 per mm3, respectively, percentage of CD45RA+ naive CD4 and CD8 cells were 68% and 81%, and endogenous IgG and IgM levels were 840 and 97 mg/dL. T cells showed regular responses to antigen and mitogen stimulation and exhibited normal TCRVβ repertoires. Endogenous IgG levels returned to normal by day +100, and no intravenous immunoglobulin infusion was required after day +100 in all but 1 patients. Positive vaccine-specific antibody responses were seen in patients after reimmunization at 12-24 months post-transplant. Clinically, patients have normal growth and development and do not exhibit increased susceptibility to infection. Our data showed that HSCT after RIC offers an optimal treatment for severe PID by providing robust post-transplant immune reconstitution while minimizing side effects. To reduce the risk of graft failure, we recommend a targeted busulfan AUC of 5000 µM*min/day for 2 days. Disclosures No relevant conflicts of interest to declare.
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Omwanghe, Osarhiemen A., Soyang Kwon, Devin S. Muntz, Simone Montgomery, Opeyemi Kemiki, Lewis L. Hsu, Alexis A. Thompson, and Robert I. Liem. "Habitual Physical Activity and Exercise Patterns in Children and Adolescents with Sickle Cell Disease." Blood 124, no. 21 (December 6, 2014): 4099. http://dx.doi.org/10.1182/blood.v124.21.4099.4099.
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Abstract Background Sickle cell disease (SCD) and its complications have a major impact on physical functioning in affected children and adolescents. However, little is known about habitual physical activity patterns and exercise routines in this population. The aims of this study were to evaluate the amount of time spent in moderate (MPA) or vigorous (VPA) physical activity, examine participation in school-based physical education or organized sports, and explore factors that influence physical activity or exercise habits in children and adolescents with SCD. Methods A58-question, self-administered survey was given to a cross-sectional group of children with SCD (all genotypes) in grades 6 through 12 followed in the Comprehensive Sickle Cell Programs at Ann & Robert H. Lurie Children’s Hospital of Chicago and the University of Illinois at Chicago. Children on hydroxyurea therapy and chronic transfusions were included. The survey included 2 sections: 1) questions adapted from the National Health and Nutrition Examination Survey (NHANES) Physical Activity Questionnaire and 2) supplemental questions addressing participation in school-based physical education and organized sports; disease severity and impact on physical activity; and attitudes about physical activity and exercise. We performed standard descriptive analyses and bivariate analysis using Pearson’s chi-square or Student’s t-test for independent samples for comparison of categorical and continuous data, respectively. Responses from NHANES questions were compared to age, sex and race matched data collected from the 2009-2010 NHANES survey. Results A total of 88 surveys have been collected to date. Among respondents with SCD, 59% were between 11 and 15 years old, 51% were male, 66% had hemoglobin SS disease, 44% were on hydroxyurea and 19% were on chronic transfusions. Data were compared to extracted data from 1362 NHANES participants weighted to adjust for differences in distributions in age, sex and race between groups. The proportion of children with SCD who reported at least 10 minutes of VPA in a typical week (66 vs. 65%, p = 0.91) and their frequency of VPA (2.8 vs. 2.5 days per week, p = 0.44) did not differ from that of children from the NHANES cohort. However, a higher proportion of children with SCD reported MPA (67 vs. 42%, p < 0.001) with a frequency (2.3 vs. 1.4 days per week, p < 0.001) that was significantly higher than that reported in NHANES. The duration of VPA or MPA on a typical day also differed significantly between groups. Compared to children from NHANES, fewer children with SCD reported spending more than 60 minutes in VPA or MPA on a typical day. Overall, only 13% of children with SCD met US physical activity guidelines recommending at least 60 minutes of physical activity every day. Of those children with SCD surveyed, 47% reported participating in school-based sports teams or physical activity clubs and 74% reported participating in physical education when offered at their school. Finally, we examined those variables that were associated with physical activity and participation in organized sports or physical education in children with SCD. Children 11 to 15 years old, when compared to children greater than 15 years old, were more likely to report 60 min of physical activity on more than 2 days per week (73 vs. 27%, p < 0.05). However, neither age nor sex affected participation in organized sports or physical education. We found that physical activity and participation in organized sports or physical education were not significantly affected by respondent beliefs regarding the impact of SCD on enjoyment of those activities. Sickle cell genotype, hydroxyurea use, chronic transfusions, and parental and personal attitudes toward physical activity also had no influence on participation in physical activity, organized sports or physical education in children with SCD. Conclusions When compared to matched peers in the NHANES study, children with SCD participate in comparable levels of VPA and even exceed their peers in levels of MPA. Participation in school-based organized sports and physical education was also common in children with SCD despite the previously reported impact of SCD on physical functioning in this population. Further studies are needed to determine the safety and potential health benefits of regular exercise and athletic participation in this population. Disclosures No relevant conflicts of interest to declare.
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Badawy, Sherif M., Leonardo Barrera, Graham Zolkowski, and Zeinab Alward. "Home-Based Assessment of Patient Reported Outcome Measures Using a Smartphone App Platform: A Feasibility Study." Blood 134, Supplement_1 (November 13, 2019): 420. http://dx.doi.org/10.1182/blood-2019-131334.
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Background: Sickle cell disease (SCD) is the most common genetic disorder in the United States, affecting 100,000-120,000 Americans. SCD Complications include pain episodes, chronic anemia and long-term end organ damage. These complications result in significant declines in health-related quality of life (HRQOL) and other patient-reported outcomes (PROs) across the lifespan. However, PROs are not routinely monitored in the clinical setting or at home in SCD, and the ideal frequency of HRQOL assessment remains unclear. Additionally, prior studies suggested that frequent PRO assessments result in patient survey fatigue. Patient Reported Outcomes Measurement Information System (PROMIS®) is an NIH-endorsed, novel, reliable platform for the assessment of PROs, including physical, mental, and social aspects of HRQOL. PROMIS® also utilizes a unique approach for patient- or parent proxy-report using Computerized Adaptive Testing (CAT) with a comprehensive, item-response theory optimized item bank. Specific Aims: (1) To evaluate the feasibility and acceptability of the assessment of patients HRQOL at home using smartphones with PROMIS®-CAT measures integrated into a SCD-app; (2) To examine the effect of the frequency of HRQOL assessments on participants' completion rate over 24-week period with HRQOL evaluated every 2 weeks (Group 1) vs. every 4 weeks (Group 2); and (3) To explore participants' experience and preferences with the process and the frequency of HRQOL assessment at home using their smartphones with PROMIS®-CAT measures integrated into a SCD-app as a user-centered approach. Hypotheses: The assessment of patients' HRQOL at home using a SCD smartphone application (app) platform is feasible and acceptable, and that less frequent assessments of HRQOL at home will have an overall higher completion rate when compared to more frequent ones. Methods: In this pilot randomized trial, patients and their parents were enrolled from comprehensive sickle cell clinic at Lurie Children's Hospital of Chicago. Patients were eligible if they were 12 years or older and had a SCD diagnosis. Loaner smartphones were provided to eligible participants who did not have access to a smartphone. Participants were randomly assigned to either Group A (every 2 weeks) or Group B (every 4 weeks) HRQOL assessment using PROMIS®-CAT measures using our SCD-app. PROMIS®-CAT measures included fatigue, pain intensity, depression, anxiety and peer relationships. At enrollment, participants had SCD-app downloaded and set-up on their smartphones and completed demographics and technology comfort questionnaire. At the end of the study, participants completed a semi-structured interview with an app usability evaluation as well as acceptability and satisfaction questionnaires. Results: A total of 42 patients participated (57% males, 91% Black, age [mean±SD] 15.7±3 years old) with 94% enrollment rate. Overall HRQOL assessment completion rate was 56.4% among all participants, meeting our feasibility criteria of ≥50%, including 65% for patients and 47.9% for parents (P=0.13). Completion rates were significantly higher in Group B [every 4 weeks] compared to Group A [every 2 weeks] among patients only (71.7% vs. 59.3, P=0.005) and all participants [patients/parents] (65.4% vs. 45.5%, P<0.001), respectively. Similar findings were seen among parents with trend towards significance (Group B [58.3%] vs. Group A [37.5%], P=0.09). Participants who completed assessments using iPads had significantly higher completion rates compared to iPhones (100% vs. 45.2%, P<0.001), respectively. Similar findings were seen among participants who installed SCD-app at home compared to those who did so in clinic (83.3% vs. 47%, P<0.001), respectively. Acceptability, usability and satisfaction scores were high among participants (86-100%). Participants provided additional detailed feedback to improve the user interface for the next iteration of our SCD-app. Conclusions: The completion of HRQOL assessments at home using PROMIS®-CAT measures integrated into a SCD-app is feasible and acceptable. Completion rates were significantly higher with less frequent HRQOL assessment (every 4 weeks) and using iPads. Future longitudinal studies are needed to better understand how to present PRO scores to patients, use them to direct clinical decisions and how to integrate PRO assessments as part of routine care for patients with SCD. Disclosures No relevant conflicts of interest to declare.
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Badawy, Sherif M., Kathryn King, Olivia E. Atherton, Daniel Mroczek, Alexis A. Thompson, David Cella, Tonya M. Palermo, Jane L. Holl, and Robert I. Liem. "Relationship of Hydroxyurea Adherence to Depression and Fatigue Among Children and Adolescents with Sickle Cell Disease: A Longitudinal Cohort Study." Blood 138, Supplement 1 (November 5, 2021): 3104. http://dx.doi.org/10.1182/blood-2021-149902.
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Abstract Background: Sickle cell disease (SCD) is the most common genetic disorder in the United States, seen in 100,000 Americans. SCD complications include pain episodes, chronic anemia and long-term end organ damage, leading to significant impairment in health-related quality of life (HRQOL) across the lifespan. Hydroxyurea (HU) reduces morbidity and mortality, improves HRQOL and lowers healthcare utilization, yet adherence remains suboptimal. Limited evidence from cross-sectional studies demonstrates an association between lower HU adherence and worse HRQOL scores. Objective: To assess the longitudinal relationship of HU adherence to HRQOL domains, including fatigue and depression. We hypothesized that higher HU adherence over time would be associated with improvement in HRQOL domain scores, especially depression and fatigue. Methods: In this longitudinal cohort study (NCT04675645), patients were enrolled from the comprehensive sickle cell clinic at Lurie Children's Hospital of Chicago. Patients were eligible if they were ³8 years old, had SCD (any genotype), and on HU with a stable dose for ³2 months. Study assessments included PROMIS ® measures for depression and fatigue, self-report of adherence using visual analogue scale (VAS), and patient demographics. Assessments were completed at baseline and every 3 months with a total of 5 visits (0, 3, 6, 9 and 12 months). Laboratory markers of adherence collected from chart review, including fetal hemoglobin (HbF%) and mean corpuscular volume (MCV). We conducted bivariate correlations among demographic variables, adherence markers and HRQOL scores as well as among adherence variables (VAS, HbF, MCV) at each visit. We conducted different multilevel models (MLMs), fixed and random effects, to understand the extent to which between- and within-person variation in adherence was associated with HRQOL scores over the 12-month period. We report unstandardized betas (B) and 95% Confidence Intervals (CI) from the MLMs. Results: Twenty-three patients have been enrolled (96% HbSS, 65% females, 100% Black, median age 15 [range 9-22] years old). At baseline, participants had a median Hb level of 9.5 (IQR 8.3-10.3 g/dl) with a HbF of 16.4% (IQR 13.1-28.7%) and MCV of 106.5 fl (IQR 91.6-113.9 fl). Participants' MCV levels significantly correlated with HbF% and VAS at visit 1 (r=0.58, P <0.01; r=0.6, P <0.01), visit 2 (r=0.66, P <0.01; r=0.63, P <0.01), visit 4 (r=0.76, P <0.01; r=0.72, P <0.01) and visit 5 (r=0.71, P <0.01; r=0.59, P <0.05), respectively. Participants' VAS adherence levels significantly increased from visit 1 to visit 5 (median 72 [IQR 60-92] vs. 88 [IQR 75-95], P=0.04, respectively) along with significant improvement in their fatigue scores (median 52.8 [IQR 35.1-70.5] vs. 30.8 [IQR 13.2-48.4], P=0.001, respectively). Variation in fatigue and depression scores across the study period was due to between-person differences (38% and 71%, respectively) or within-person fluctuations (62% and 29%, respectively). Using fixed and random effect MLMs, between-person differences in HU adherence over 12 months using VAS and HbF% were significantly related to participants' reported depression (B -0.43, 95% CI -0.69 to -0.17, P <0.01; B -0.58, 95% CI -1 to -0.15, P <0.05, respectively) (Figure 1) and fatigue scores (B -0.42, 95% CI -0.68 to -0.16, P <0.01; B -0.43, 95% CI -0.78. to -0.06, P <0.05, respectively) (Figure 2). In contrast, we found no statistically significant effects of within-person variation in adherence, using VAS and HbF, on participants' reported fatigue and depression scores over 12 months, which could be due our small sample size. Conclusions: Children and adolescents who were more adherent to HU across the entire study period were less likely to experience fatigue and depression, compared to those who were less adherent. Participants' self-report and laboratory markers of adherence were significantly correlated across study visits. Within-person fluctuations in adherence were not associated with changes in fatigue and depression scores across the study period. Future multi-institutional studies with a larger sample size are needed to better understand the within-person effects of variation in HU adherence on HRQOL scores over time. Behavioral interventions, such as mHealth apps, that are focused on improving HU adherence among children and adolescents with SCD has the potential to improve HRQOL and other important health outcomes. Figure 1 Figure 1. Disclosures Badawy: Bluebird Bio Inc: Consultancy; Vertex Pharmaceuticals Inc: Consultancy; Sanofi Genzyme: Consultancy. Thompson: Biomarin: Research Funding; Baxalta: Research Funding; bluebird bio, Inc.: Consultancy, Research Funding; Celgene/BMS: Consultancy, Research Funding; CRISPR Therapeutics: Research Funding; Vertex: Research Funding; Editas: Research Funding; Graphite Bio: Research Funding; Novartis: Research Funding; Agios: Consultancy; Beam: Consultancy; Global Blood Therapeutics: Current equity holder in publicly-traded company. Cella: FACIT: Membership on an entity's Board of Directors or advisory committees.
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Dalzell, Victoria, Nina L. Gotteiner, C. Elise Duffy, Elfriede Pahl, Constantine Mavroudis, Carl L. Backer, and Stanford T. Shulman. "Coronary Artery Bypass Grafting for Kawasaki Disease at Children's Memorial Hospital, Chicago. • 696." Pediatric Research 41 (April 1997): 118. http://dx.doi.org/10.1203/00006450-199704001-00716.
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Emanuel, Benjamin, Neil Aronson, and Stanford Shulman. "Malaria in Children in Chicago." Pediatrics 92, no. 1 (July 1, 1993): 83–85. http://dx.doi.org/10.1542/peds.92.1.83.
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Objective. To review the experience of a large children's hospital and two community hospitals in Chicago in which malaria was diagnosed in children during a recent 6-year period. Methods. Retrospective medical record review covering the years 1985 to 1990. Results. Twenty cases of childhood malaria were diagnosed, generally in patients hospitalized for fever unresponsive to oral antibiotics also associated with splenomegaly, with presumptive diagnoses of malignancy, typhoid fever, acute appendicitis, or urinary tract infection. History of recent immigration to the United States or travel to a malaria-endemic area was frequently not elicited until several days into hospitalization, thus delaying diagnosis and therapy. Conclusions. Because malaria in the United States pediatric population has increased as a result of foreign immigration and overseas travel, pediatricians must be alert to the possibility of malaria in febrile children, and the importance of antimalarial prophylaxis should be communicated to parents of children traveling to endemic areas.
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Ford, Edward G. "Forty-six years of patent ductus arteriosus division at children's memorial hospital of Chicago. Standards of comparison." Journal of Pediatric Surgery 31, no. 1 (January 1996): 209. http://dx.doi.org/10.1016/s0022-3468(96)90361-9.
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Schwartz, Denise B. "Hospital Malnutrition: A 33-Hospital Screening Study SAVITRI K. KAMATH, MARILYN LAWLER, ALICE E. SMITH, AND RONALD OLSON University of Illinois at Chicago, University of Chicago Hospitals, and Children's Memorial Hospital, Chicago J Am Dietetic Assoc 86: 203-206, 1986." Nutrition in Clinical Practice 1, no. 4 (August 1986): 223–24. http://dx.doi.org/10.1177/088453368600100415.
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Morgan, Elaine. "Prenatal Detection of Neuroblastoma—A Noninvasive Approach." Pediatrics 95, no. 1 (January 1, 1995): 161. http://dx.doi.org/10.1542/peds.95.1.161.
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In the September 1993 issue of Pediatrics, Ho et al presented the experience of the Dana-Farber Cancer Institute in the management and outcome of 11 infants with neuroblastoma detected by prenatal ultrasound.1 Those patients demonstrated favorable biology and were managed with operative resection. One patient with progressive disease responded to chemotherapy. All patients had a good outcome. I have similarly reported one patient with prenatally detected neuroblastoma managed at Children's Memorial Hospital in Chicago. This patient is being reported with two additional cases in association with Drs Saylors, Cohn, and Brodeur.2
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Zucker, Aaron R. "Red Book Recommendations on Ribavirin Challenged." Pediatrics 93, no. 5 (May 1, 1994): 872–73. http://dx.doi.org/10.1542/peds.93.5.872a.
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I am the Director of Pediatric Critical Care at Wyler Children's Hospital at the University of Chicago. Because I had personally witnessed problems when administering ribavirin for respiratory syncytial virus (RSV) lung disease, I became interested in learning about others' experiences with the drug. At that time, no studies particular to the drug's use in mechanically ventilated infants had been published, yet the 1991 Red Book stated that "infants who require mechanical ventilation because of severe RSV infection are those who may be most likely to benefit from ribavirin treatment."
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MADDALOZZO, JOHN, ANDREW FRANKEL, and LAUREN D. HOLINGER. "Midline Cervical Cleft." Pediatrics 92, no. 2 (August 1, 1993): 286–87. http://dx.doi.org/10.1542/peds.92.2.286.
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The congenital midline cervical cleft represents a rare developmental abnormality that is not widely reported in the pediatric literature.1 Usually the lesion is initially evaluated by a pediatrician or other primary care physician who misinterprets the deficit as a branchial cleft deformity or thyroglossal duct cyst. Although developmentally related to these disorders, the congenital midline cleft represents a distinct anomaly that should be recognized at initial examination. The parents can then be appropriately counseled about the implications and further management decisions that are peculiar to this disorder. We have recently treated five cases of congenital midline cervical cleft at the Children's Memorial Hospital, Chicago, IL.
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Bressler, Kyle L., Michael E. Dunham, Peter C. Kaiser, and Lauren D. Holinger. "Primary Closure of Persistent Tracheocutaneous Fistula in Children." Annals of Otology, Rhinology & Laryngology 103, no. 11 (November 1994): 835–37. http://dx.doi.org/10.1177/000348949410301101.
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Thirty-six patients with persistent tracheocutaneous fistula (TCF) after pediatric tracheotomy were managed at Children's Memorial Hospital in Chicago between June 1987 and July 1992. Persistent TCF was managed with surgical excision and primary closure. The mean patient age was 5 years 7 months, and the mean duration between decannulation and fistula closure was 21 months. There were no major complications and four minor complications. While most surgeons advocate other techniques, we feel that excision with primary closure is the preferred method for persistent TCF. The technique requires an airtight tracheal closure with loose closure of the peristomal soft tissue. Careful preoperative evaluation, postoperative monitoring, and wound drainage are stressed.
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Moungthong, Greetha, and Lauren D. Holinger. "Laryngotracheoesophageal Clefts." Annals of Otology, Rhinology & Laryngology 106, no. 12 (December 1997): 1002–11. http://dx.doi.org/10.1177/000348949710601203.
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This article reviews laryngeal cleft anomalies from the Laryngeal Development Laboratory at Children's Memorial Hospital in Chicago and includes a discussion of the classification of laryngotracheoesophageal clefts based on previous work and the information presented herein. Of the 115 laryngeal specimens obtained between 1975 and 1995, 11 have laryngeal cleft anomalies. Eight have a submucous laryngeal cleft. There is 1 laryngotracheoesophageal cleft, type II (partial cricoid cleft); and there are 2 laryngotracheoesophageal clefts, type III (complete cricoid cleft). The histopathologic findings are presented in detail and the literature is reviewed. Photomicrographs and drawings illustrate the pathology and classification. Clinical presentation, diagnosis, evaluation, and management are discussed, as is the embryology.
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Walterhouse, David O., Margo L. Hoover, Mary Anne H. Marymont, and Morris Kletzel. "High-dose chemotherapy followed by peripheral blood stem cell rescue for metastatic rhabdomyosarcoma: The experience at Chicago Children's Memorial Hospital." Medical and Pediatric Oncology 32, no. 2 (February 1999): 88–92. http://dx.doi.org/10.1002/(sici)1096-911x(199902)32:2<88::aid-mpo3>3.0.co;2-n.
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CHARNEY, EVAN. "Collaborative Research: Once More Into the Breach." Pediatrics 82, no. 3 (September 1, 1988): 510–11. http://dx.doi.org/10.1542/peds.82.3.510.
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In this issue, Christoffel and associates1 described a new program of practice-based research involving community pediatricians and the Department of Pediatrics at Children's Memorial Hospital in Chicago. In one sense, all clinical research is practice based and has a long and honorable history in medicine. What has changed is that the gap between those who conduct research and those in clinical practice has widened. As the pathophysiology of diseases is better understood, the frontier of biomedical science has moved from the whole patient to the organ system, the cell, and, now, the molecular level. It is as if each generation of researchers has snapped a progressively higher power lens under the microscope, with a deeper but more narrow focus.
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Trotman, Carroll-Ann, Ross E. Long, Sheldon W. Rosenstein, Carole Murphy, and Lysle E. Johnston. "Comparison of Facial Form in Primary Alveolar Bone-Grafted and Nongrafted Unilateral Cleft Lip and Palate Patients: Intercenter Retrospective Study." Cleft Palate-Craniofacial Journal 33, no. 2 (March 1996): 91–95. http://dx.doi.org/10.1597/1545-1569_1996_033_0091_coffip_2.3.co_2.
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The purpose of this study was to describe and compare posttreatment craniofacial morphology in samples of complete unilateral cleft lip and palate (CUCLP) patients treated at two leading clinics: The Children's Memorial Hospital Cleft Palate Clinic, Chicago, Illinois, and the Lancaster Cleft Palate Clinic, Lancaster, Pennsylvania. These centers have well-defined treatment protocols that allow the long-term effects on craniofacial form of the following treatment regimes to be contrasted: (1) Chicago—primary alveolar bone grafting, with definitive lip repair at age 4 to 6 months and hard and soft palate repair at 6 to 12 months; and (2) Lancaster—definitive triangular-flap lip repair at 3 months of age, followed by staged surgeries of the hard and soft palates, both completed by 18 months of age, but without primary alveolar bone grafting. Although the Lancaster center now performs secondary alveolar bone grafting, the majority of the patients studied here were treated before this procedure became part of their protocol. Patients were eligible for inclusion if they had no other congenital anomalies and no previous orthodontic treatment. A sample of 43 (24 male, 19 female) CUCLP patients was obtained from the Chicago Center, each of which was then matched to a non-grafted Lancaster CUCLP patient. The matching criteria were age, sex, and sella-nasion distance (to control, at least in part, for size differences). Lateral cephalometric radiographs of these 86 CUCLP patients were traced, digitized, and analyzed. Additionally, all linear data were adjusted to a standard magnification of 8% because the cephalograms from each center featured different enlargements. The Chicago and Lancaster samples had mean posttreatment ages of 10.32 years (SD = 1.96) and 10.40 years (SD = 2.18), respectively. The grafted Chicago group had faces that were on average less maxillary protrusive compared with the nongrafted Lancaster sample; it appeared, however, that the mandible compensated for the maxillary position by downward and backward rotation. As a result, a similar maxillomandibular relationship was noted in both groups, although, in the Chicago group, the lower anterior facial height increased.
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Dayan, Steven H., Michael E. Dunham, Constantine Mavroudis, Carl L. Backer, and Lauren D. Holinger. "Slide Tracheoplasty in the Management of Congenital Tracheal Stenosis." Annals of Otology, Rhinology & Laryngology 106, no. 11 (November 1997): 914–19. http://dx.doi.org/10.1177/000348949710601106.
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Long-segment congenital tracheal stenosis (LSCTS) is a rare condition. Originally, it was felt to be uniformly fatal; however, advances in technique have made surgical repair and survival possible. Our objective is to report results and technique of slide tracheoplasty for the treatment of LSCTS in the context of the overall experience at the Children's Memorial Hospital in Chicago. We reviewed 37 cases of infants and children with LSCTS. Thirty of the 37 infants underwent surgical intervention. Slide tracheoplasty resulted in survival in 1 of 2 infants, and pericardial patch tracheoplasty resulted in survival in 21 of 28 (75%). Of the 30 patients who had surgical repair, 7 (23%) have died, and 1 has been lost to follow-up (3%). Follow-up has ranged from 6 months to 13 years. Slide tracheoplasty is a satisfactory adjunct to existing techniques. With early diagnosis and appropriate management of LSCTS, survival is possible in a majority of patients.
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Reynolds, S., E. K. Weber, and P. J. Severin. "(P1-106) Scarce Resources Planning Summit for Pediatric Critical Care and Transport Stakeholders." Prehospital and Disaster Medicine 26, S1 (May 2011): s133. http://dx.doi.org/10.1017/s1049023x11004390.
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There are six children's hospitals in Chicago, Illinois and the surrounding region. These hospitals often have bed limitations due to high censuses in daily operations. The Pediatric Committee of the Chicago Healthcare System Coalition for Preparedness and Response had provided two conferences in pediatric emergency preparedness in Spring 2010 that identified a need to examine scarce critical care resources in the region. A “Pediatric Critical Care and Transport Stakeholder's Summit” was convened in April 2010. This meeting brought together the Pediatric Critical Care Medical and Nursing Directors along with Transport Team representatives from major hospitals to identify the key issues related to pediatric emergency preparedness and scarce resources. The four-hour Summit, was held in a Conference Center, away from any hospital or clinical setting, was organized into seven sections: (1) Welcome & Introductions; (2) Issues Identification; (3) Scenario Introduction; (4) Specific Issues Indentification; (5) Prioritization of Specific Issues; (6) Development of Action Steps; and (7) Moving Forward. A Facilitator with specific knowledge of hospital-based preparedness led the Summit process. He utilized a pediatric scenario to engage the participants in discussion, interaction, and planning. Action steps, with statements of need and specific action items were developed, based on the following prioritized issues: (1) lack of pediatric training and experience for front line personnel; (2) alternate care sites/bed capacity/surge planning; (3) ethical issues; (4) transport; (5) credentialing/pediatric specialist availability; (6) incident command/community integration; (7) pediatric supplies and equipment; (8) patient indentification; (9) financial tracking/reimbursement; and (10) Crisis Standards of Care/Crisis Operation Standards Moving forward, the participants of the Summit will reconvene into small workgroups to develop plans and training for the areas specified above. In May, 2011 a statewide exercise utilizing the special population of children will occur to test these plans.
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Schultz, Rachael F., Soyang Kwon, Anjali Sharathkumar, and Rukhmi Bhat. "Prospective Validation of the Peds Clot Clinical Decision Rule [Pdcr] in Hospital-Acquired Venous Thromboembolism: An Interim Analysis." Blood 128, no. 22 (December 2, 2016): 3812. http://dx.doi.org/10.1182/blood.v128.22.3812.3812.
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Abstract Background: Venous thromboembolism (VTE) is an emerging hospital acquired complication in pediatric hospitals. Substantial efforts have been made to identify high-risk population based on exposure to risk-factors for VTE. Our group developed the PedsClot Clinical Decision Rule (Sharathkumar et al Journal of Thrombosis and Haemostasis, 10: 1326-1334) to identify this high-risk population based on a case-control study but this has not been validated yet. Objective: To validate thePedsClot Clinical Decision Rule [PDCR] through prospective collection of data in a tertiary pediatric hospital. This study reports our findings of interim analyses for process evaluation. Methods: This prospective data collection was performed using the Lurie Children's hospital automatic data import facility through the Enterprise Data Warehouse[study period: 02/01/2012-12/31/14]. Real time data was added to a research database of consecutive admissions based on following inclusion criteria: > 48 hour stay in the Intensive Care (Pediatric, Cardiac, Neonatal), Hematology Oncology and Infectious Disease units. Following variables were included in the dataset: age, sex, ethnicity, date of admission and discharge, ICU admission, central venous catheter (CVC), blood stream infection, immobilization, oral contraceptives, mechanical ventilation> 12hrs, and length of stay. Risk factors were weighed and scored as per PDCR rule. Chi-square tests were used to examine the association between the potential risk factors and VTE. PDCR model performance was evaluated by reporting the sensitivity and specificity. Results: A total of 1722 children were eligible for the interim analyses. The demographic and clinical features of the dataset analyses and the odds ratio [OR] are detailed in Table 1 and 2 respectively. Of 1722 patients, 57 (3.3%) were identified as VTE, 50% were admitted to the ICU and 51% had a CVC. VTE was associated with age ≥ 13 years (AOR=2.3; 95% CI=1.3, 4.0), ICU admission (AOR=2.4; 95% CI=1.3, 4.4), and CVC (AOR=1.9; 95% CI=1.1, 3.3). The model performance showed that at the cut off point of 3, the specificity of the PDCR in predicting VTE was 75% but had a low sensitivity (37%). Risk prediction variables such as assessment of immobilization, use of oral contraceptives and prediction of hospital stay required manual entry into the datasheet; this makes data-capture labor intensive, especially for larger datasets. Conclusions: This study utilized technological advances and database warehouse facility to validate PDCR. This interim data analyses indicates that in real life, PDCR has a high specificity but poor sensitivity in identifying children with predisposition for VTE. We are currently working to refine the risk model which may lead to a better model performance. Disclosures Sharathkumar: Bayer, Baxter, CSL Behring: Consultancy.
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Christoffel, K. K., H. J. Binns, J. A. Stockman, P. McGuire, J. Poncher, S. Unti, B. Typlin, G. Lasin, and W. Seigel. "Practice-Based Research: Opportunities and Obstacles." Pediatrics 82, no. 3 (September 1, 1988): 399–406. http://dx.doi.org/10.1542/peds.82.3.399.
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Renewed interest in practice-based research reflects growing realization of the limitations of research from a hospital perspective. Practice-based pediatric research promises to broaden the range and severity of conditions commonly studied, to enhance the study of the natural history of disease and of normal development, to provide normal controls and standards, and to facilitate recruitment of adequate sample sizes. Cohort, incidence, and health services research will be promoted by the development of patient registries. The Chicago area Pediatric Practice Research Group is a research consortium of 81 practitioners in 27 office practices. Formed in 1984, it receives logistic and financial support from children's Memorial Hospital, with which it is affiliated. The Pediatric Practice Research Group has undertaken six studies, most with outside funding. During these studies, some unifying characteristics of practice-based research have emerged. These include the need to tailor study protocols to individual practice characteristics and routines and the critical role of office staff in the conduct of research. Features can be identified that make specific studies more or less intrusive into office functioning. It has proved feasible to obtain data of high quality and reproducibility despite geographically scattered data collection sites. This review of Pediatric Practice Research Group activities and experience is intended to open an exchange of ideas with others interested in practice-based research.
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Peddinti, R., R. Zeine, D. Luca, R. Seshadri, A. Chlenski, K. Cole, B. Pawel, H. Salwen, J. Maris, and S. L. Cohn. "Prominent vascular endothelial proliferation in clinically aggressive neuroblastoma." Journal of Clinical Oncology 25, no. 18_suppl (June 20, 2007): 10611. http://dx.doi.org/10.1200/jco.2007.25.18_suppl.10611.
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10611 Background: Tumor blood vessels are disorganized and vascular endothelial cell proliferation (VEP) has been identified as a poor prognosticator in many adult cancers. To determine the clinical significance of VEP in neuroblastoma (NB), we evaluated blood vessel architecture in tumor sections from 51 children diagnosed at Children's Memorial Hospital, Chicago (CMH) and in 154 NB tumors on a Tissue Microarray (TMA) constructed at Children's Hospital of Philadelphia (CHOP). Methods: H&E-stained tumor sections were examined for the presence of structurally abnormal vessels and further characterized by immunostaining with anti-CD31 and von Willebrand factor (vWF) antibody to highlight endothelial cells. Tumors that contained vessels with disorganized walls and more than one endothelial cell layer were classified as VEP positive. Tumor sections that contained only thin walled vessels with no more than one layer of endothelial cells were classified as VEP negative. Associations between VEP and established clinico-pathologic features and outcome were assessed. Results: In the CHOP series, VEP was associated with high-risk group classification and MYCN amplification (p<0.001 and p=0.006). In the CMH series only 5 of the 10 children with MYCN amplification had VEP but 4 of these 5 patients have died, while there were no deaths in the subset of patients with MYCN amplified tumors that lacked VEP (n=5). In both study groups, VEP was significantly associated with Schwannian stroma-poor histology (CMH series: p=0.008; CHOP series: p<0.001) and decreased survival probability (CMH series: p=0.017; CHOP series: p= 0.014). Conclusions: The association between structurally abnormal vessels and poor outcome provides further support for the concept that angiogenesis plays an important role in determining the biologic behavior of NB tumors. Our results also indicate that angiogenesis is regulated differently in Schwannian stroma-rich versus stroma-poor NB tumors. Further studies investigating the activity of angiogenic inhibitors in children with clinically aggressive stroma-poor NB are warranted. No significant financial relationships to disclose.
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Backer, Carl L. "Severe pulmonary valvar insufficiency should be aggressively treated." Cardiology in the Young 15, S1 (February 2005): 64–67. http://dx.doi.org/10.1017/s1047951105001058.
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My role in the debate between myself and Bill Gaynor is to substantiate the notion that severe pulmonary valvar insufficiency should be treated in aggressive fashion. This gives me few problems. At Children's Memorial Hospital in Chicago, we have a long tradition of favouring early insertion of new pulmonary valves in patients with significant pulmonary valvar insufficiency following repair of tetralogy of Fallot. Our results with this strategy in the current era were first presented in 1986 at the Western Thoracic Surgical Association.1 At that time, we had inserted pulmonary valves late following repair of tetralogy of Fallot in 42 patients. We postulated that early control of pulmonary insufficiency may prevent long-term deterioration in right ventricular function. The fact that this is a controversial issue became immediately apparent during the discussion of our presentation. Dr. Frank Spencer, from New York, stated “I would completely disagree with the concept of electively inserting a porcine valve in a child on the basis of haemodynamic data. I fear that the approach recommended in this presentation is probably treating one disease by creating a worse one.”
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Bhat, Rukhmi, Riten Kumar, Soyang Kwon, Karna Murthy, Leif Nelin, Paul Monagle, and Robert I. Liem. "Risk Factors for Neonatal Thrombosis in the Neonatal Intensive Care Unit -a Case Control Study." Blood 126, no. 23 (December 3, 2015): 1109. http://dx.doi.org/10.1182/blood.v126.23.1109.1109.
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Abstract Background Neonates admitted to the neonatal intensive care unit (NICU) are an age group most susceptible to thrombosis in pediatrics. Besides central access devices (CAD), maternal and neonatal factors are reported to be associated with thrombosis. This has not been well investigated because of the relatively rare incidence of thrombosis and the inherent heterogeneity of thrombotic events. An assessment of the impact of individual risk factors is an essential step, as appropriate risk stratification is fundamental to evidence based thromboprophylaxis policy. Objective To identify risk factors associated with thrombosis in sick neonates admitted to the NICU. Methods A case-control study was conducted using the Children's Hospital Neonatal Database (CHND) dataset with neonates admitted to the NICU at Ann and Robert H. Lurie Children's Hospital and Nationwide Children's hospital between Jan 2010 and June 2013. Cases were neonates diagnosed with either arterial or venous thrombosis during their NICU stay and controls were matched to the cases in the same patient pool in a 1:4 ratio on the basis of gestational age and presence or absence of CAD. Neonates with a less than 72-hour stays in the NICU or complex congenital heart defects needing surgical repair as well as re-admission data were excluded. Chi-square tests were performed to compare characteristics as well as potential risk factors between cases and controls. A conditional multivariate logistic regression analysis included potential risk factors with p-value<0.1 in chi-square tests and with clinical relevance. Local IRB approval was obtained at both sites. Results A total of 47 cases were identified in 4,122 NICU patients (11.4 per 1,000 patients). There were 32 (68%) males and 27 (57.5%) preterm neonates with thrombosis. On univariate analysis blood stream infections (BSI) and prolonged mechanical ventilation were significantly more common in cases than controls Table 1. A conditional multivariate analysis showed that prolonged mechanical ventilation was independently associated with higher risk of thrombosis (OR 3.03 [95% CI: 1.29, 7.09], p value 0.01 Table 2). Conclusions The incidence of thrombosis appears to be 5 fold higher than that previously reported in a Canadian registry. After matching for CAD and GA, prolonged mechanical ventilation represents an independent risk factor of thrombosis in neonates. This is the largest study of systematic assessment of risk factors in neonates with mechanical ventilation being reported as a risk factor independent of CAD. Larger multi-centered data should confirm the study results for developing evidence-based risk stratification protocols and thrombosis prevention strategies. Table 1. Comparison of characteristics and potential risk factors between thrombosis cases and controls Patients with thrombosis Patients without thrombosis Variable n (%) n (%) p value Total 47 188 Gender (Male) 32 (68.1) 102 (54.3) 0.09 Gestational age at birth ≤32 weeks 18 (38.3) 72 (38.3) 1.00 33-36 weeks 9 (19.2) 36 (19.2) ≥37 weeks 20 (42.5) 80 (42.6) Birth Weight (gms) 0.51 <2500 22 (46.8) 97 (52.2) ≥2500 25 (53.2) 89 (47.8) Maternal antenatal conditions Chorioamnionitis 2 (4.6) 7 (4.3) 0.95 Diabetes 6 (13.6) 27 (16.7) 0.63 Hypertension 14 (31.8) 39 (24.1) 0.30 Antenatal steroids use 13 (27.7) 65 (35.5) 0.31 CAD type 0.35 No 14 (29.8) 56 (29.8) UAC/UVC 3 (6.4) 24 (12.8) PICC 11 (23.4) 53 (28.2) CC/cutdown/tunnel catheter 0 (0) 3 (1.6) Multiple types 19 (40.4) 52 (27.7) Mechanical ventilation (MV)˃48 hrs 27 (57.4) 68 (36.2) 0.008 Respiratory distress syndrome (RDS) 27 (57.4) 101 (53.7) 0.65 Necrotizing enterocolitis (NEC) 4 (8.5) 19 (10.1) 0.74 Hypoxic ischemic encephalopathy (HIE) 3 (6.4) 5 (2.7) 0.21 Meconium aspiration syndrome (MAS) 1 (2.1) 8 (4.3) 0.50 Blood stream infections (BSI) 9 (19.2) 17 (9.0) 0.048 Central line associated BSI (CLABSI) 2 (22.2) 1 (5.9) 0.27 Abdominal and GI surgery 16 (38.1) 50 (31.1) 0.39 Table 2. Odds ratio of thrombosis cases from a conditional multivariate logistic regression model Predictor Odds ratio 95% confidence interval p value Male gender 1.74 0.88-3.72 0.11 Prolonged mechanical ventilation 3.03 1.29-7.09 0.01 BSI 2.19 0.80-6.01 0.12 Disclosures Liem: Global Blood Therapeutics: Consultancy; Fresenius Kabi: Other: DSMB; NHLBI: Research Funding.
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Merchant, M., S. Chaudhury, R. Duerst, D. Jacobsohn, W. T. Tse, J. Schneiderman, and M. Kletzel. "Significance Of HLA-B Antigen Matching In Event Free Survival (EFS) In Pediatric Umbilical Cord Blood Transplantation (CBT): Experience from 124 Single CBT At Children's Memorial Hospital (CMH), CHICAGO." Biology of Blood and Marrow Transplantation 15, no. 2 (February 2009): 76. http://dx.doi.org/10.1016/j.bbmt.2008.12.235.
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Mcmurray, J. Scott, and Lauren D. Holinger. "Otolaryngic Manifestations in Children Presenting with Apparent Life-Threatening Events." Otolaryngology–Head and Neck Surgery 116, no. 6 (June 1997): 575–79. http://dx.doi.org/10.1016/s0194-5998(97)70230-4.
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Apparent life-threatening event (ALTE) is a term used to characterize an event of unknown cause after an infant is found limp, cyanotic, bradycardic, and/or requiring resuscitation. Like sudden infant death syndrome (SIDS), ALTE is a general term used until a precise diagnosis can be established. The relationship between ALTE and SIDS has not been clearly defined, although 7 to 15 percent of children with ALTE die of SIDS. If children with ALTE are at greater risk for SIDS, morbidity and mortality may be prevented if the underlying pathology can be identified and corrected or closely monitored. The otolaryngologist is being consulted more frequently to evaluate children who have been through an ALTE to help elucidate any underlying pathology that may have caused the near-death experience. This retrospective chart review reports the evaluation of 30 infants with ALTE requiring consultation by the Division of Pediatric Otolaryngology at the Children's Memorial Hospital in Chicago during a 3-year period. We reviewed the literature and here compare our findings with current animal models. Of the 30 children evaluated, 53% had gastroesophageal reflux, 40% had laryngeal abnormalities, 13% had tracheal abnormalities, and 10% had pharyngeal abnormalities. Thirteen percent of the children had nonotolaryngic anomalies identified during evaluation. Surgical intervention was required in 10 patients and medical treatment was used in 18. When evaluating a child with ALTE, a complete history and physical examination, evaluation for gastroesophageal reflux, assessment for upper airway obstruction by radiographs and endoscopy, and a multidisciplinary approach are recommended. (Otolaryngol Head Neck Surg 1997;116:575–9.)
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Mittal, Nupur, Mario Martinez, Johnathan Davidson, Paul Kent, Lisa Giordano, Dipti Dighe, Daniel K. Choi, et al. "Improving Accrual of Adolescents and Young Adults and Underrepresented Minorities with Leukemia to Children's Oncology Group Clinical Trials: A Novel Collaborative Approach to Address Disparities in Leukemia." Blood 128, no. 22 (December 2, 2016): 845. http://dx.doi.org/10.1182/blood.v128.22.845.845.
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Abstract Background: It is accepted that the dramatic historical decrease in mortality from ALL and AML in children and more recently AYAs is directly related to improved participation in NCI sponsored COG clinical trials. It is also known that African-American (AA) and Hispanic children, Hispanic females, and particularly AYAs 15 to 39 years are under-represented in COG clinical trials and may benefit from targeted attention. AA and Hispanic children with ALL and AML have worse survival than white and Asian children even with modern therapy where cure rates have improved drastically. Access to standard accepted chemotherapy for leukemia, socio-economic status and insurance status, differences in disease phenotype and pharmacogenetic variations play a role in these racial and ethnic disparities. AYAs with leukemia have experienced variable improvement in survival over the past two decades due partly to insufficient cancer clinical trial enrollment. Uninsured, older patients and those treated by non-pediatric oncologists were less likely to enroll onto clinical trials. Multiple studies of ALL in North America and Europe have shown AYA patients treated with pediatric "inspired" protocols have better outcomes than AYA patients treated with protocols designed for adults. Enhancing access to quality cancer care in a timely manner in these underrepresented populations (AYA, non white, or under-insured) has emerged as a priority area in oncology. In 2008, to improve access to this largely underserved population, two COG institutions (University of Illinois at Chicago (UIC) and Rush University) and a non-member hospital (John H Stroger Hospital of Cook County) created a unified COG program utilizing one lead IRB and one research team. This study assesses the impact that the collaborative UIC/Rush/Stroger COG program had on clinical trial enrollment for minority underserved and AYA patients with leukemia (ALL and AML). Methods: A retrospective comparative analyses of COG enrollment data from 2002-2008 and 2008-2014 (pre vs. post-merger) for all patients with ALL and AML by race/ethnicity, age at diagnosis, gender, insurance status, clinical trial type (biology, registry, therapeutic) , and leukemia type was completed. Information regarding the number of COG clinical trials available to enrolment and primary oncologists of enrollees' pre and post merger was collected. Results: The comparison of the number of patients enrolled pre-merger and post-merger by various variables is shown in table 1. A total of 40 enrolments with 9 being for therapeutic trials occurred at Stroger Hospital, a site with no access to COG trials prior to the merger. A total of 13 ALL patients and 5 AML patients were enrolled at Stroger Hospital, 7 of whom were uninsured (39%). Nine Pediatric Oncologists, 6 Medical Oncologists and 3 Pediatric nurse practitioners (18 total providers) were engaged in post-merger COG enrollments compared to 6 Pediatric and only 1 Medical Oncologist (7 total providers) engaged pre-merger across the three institutions. Conclusions: Significant increase in COG leukemia trial availability and enrollment especially for under-represented (non-white, underinsured) minorities and AYAs was a direct result of the creation of the novel UIC/Rush/Stroger COG Clinical Trials program. Cancer clinical trial participation has directly led to improved disease free survival and lower cancer death rates. Collaboration between institutions and Medical and Pediatric Oncologists is critical to participation of AYA's with leukemia in NCI sponsored clinical trials. Improving access to these clinical trials is essential to addressing current disparities in leukemia survival. The UIC/Rush/Stroger COG Program serves as a model for improved collaboration between competing institutions and specialists within institutions to increase access to current clinical trials for minority and AYA patients with leukemia. Disclosures No relevant conflicts of interest to declare.
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Kaplan, William E. "Summary of the Urologic Section." Pediatrics 93, no. 5 (May 1, 1994): 845–49. http://dx.doi.org/10.1542/peds.93.5.845.
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A meeting of the Section on Urology of the American Academy of Pediatrics was held in conjunction with the annual meeting of the American Academy of Pediatrics in Washington, DC, October 30 through November 1, 1993. This meeting continues to be the most significant scientific program for pediatric urology. Two hundred ninety-three abstracts were submitted worldwide, and the competition was fierce for the 91 accepted podium and poster presentations. Chairperson, Casimir F. Firlit, MD, PhD, of North-western University Medical School and Children's Memorial Hospital in Chicago, IL, presided over the meeting. The papers that were presented at this meeting and that are of interest to the practicing pediatrician are summarized in this article according to topic. URETEROPELVIC JUNCTION OBSTRUCTION This group of papers investigated both clinical management of ureteropelvic junction obstruction as well as some basic research concerns, all to determine what is the best method of management for newborns and young children with ureteropelvic junction obstruction. Early diagnosis by prenatal ultrasonography has only complicated decision-making processes relative to appropriate therapy. The combination of research protocols to evaluate the effects of obstruction as well as appropriate methods of management were presented. Thomas et al, from Leeds, determined that the renal pelvic diameter measured on a 16- to 24-week fetus could help to determine ultimate renal function. If the in utero ultrasonograph revealed a renal pelvic diameter of >15 mm, impaired renal function was the determination. However, those kidneys that had a renal pelvic diameter <5 mm would have normal renal function even though hydronephrosis would be present at the time of birth.
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Rosenstein, Sheldon W., Ross E. Long, Diane V. Dado, Britt Vinson, and Marden E. Alder. "Comparison of 2-D Calculations from Periapical and Occlusal Radiographs versus 3-D Calculations from CAT Scans in Determining Bone Support for Cleft-Adjacent Teeth following Early Alveolar Bone Grafts." Cleft Palate-Craniofacial Journal 34, no. 3 (May 1997): 199–205. http://dx.doi.org/10.1597/1545-1569_1997_034_0199_codcfp_2.3.co_2.
Full textAbstract:
Objective This investigation was conducted to determine the agreement between three-dimensional (3-D) calculations from CAT scans and two-dimensional (2-D) calculations from standard dental radiographs in evaluating bone support for cleft-adjacent teeth after primary bone grafting. Design This retrospective study utilized CAT scans and dental radiographs taken of the alveolar cleft in patients an average of 11 years after primary bone grafting. Setting The subjects were patients treated by the Cleft Palate Team at Children's Memorial Hospital and Loyola University Medical Center, Chicago, Illinois. Patients Fourteen UCLP patients (9 males, 5 females) agreed to participate In this study by undergoing CAT scan assessment of their alveolar cleft sites. They also had to have periapical or occlusal radiographs of the grafted cleft site taken within 6 months of the CAT scan. Interventions All patients underwent primary lip repair, placement of a passive palatal plate, primary alveolar bone grafting (mean age 6.4 months), and palatoplasty before 1 year of age. Major tooth movement through final orthodontics was completed by the time of the radiographic assessment. Main Outcome Measures CAT scan sections were reformatted and reconstructed to three-dimensionally calculate the percentage of root covered by bone support for the 15 teeth adjacent to the grafted cleft sites. Dental radiographs of the same teeth were also traced and digitized. Percentages of root supported by bone were also established using the dental radiographs by dividing the amount of root covered by bone, by the anatomic root length. Results A paired, two-sample t test revealed no significant differences between the two methods of assessment, while linear regression showed a statistically significant correlation between the CAT scan assessment and the percentages found on the radiographs. Conclusions Routine dental radiographs were able to estimate the total 3-D bone support for the roots of cleft adjacent teeth as determined by CAT scan to a statistically significant degree when groups where compared. The clinical significance for evaluation of individual cases was less impressive with a wide range of variability and a level of agreement that required acceptance of differences up to 25%.