scholarly journals How Pediatric Hematologic and Oncologic Patients Experienced Virtual Learning During COVID-19: Importance of Amplifying the Family Voice for Informing Future Recommendations

2020 ◽  
Vol 3 ◽  
Author(s):  
Margaret Rose ◽  
Julia LaMotte ◽  
Hannah Todd ◽  
Greer Fraser ◽  
Louise Fraser ◽  
...  

Background: With medical advancements in the detection and treatment of pediatric oncologic and hematologic disorders, survival and life expectancy rates continue to improve. However, the treatments themselves have been linked to long-term cognitive issues (e.g., attention, working memory, and executive functioning). These difficulties have particular salience to academic achievement and often necessitate educational accommodations to support learning. However, these plans are designed for the traditional school environment and may be insufficient for virtual learning. The purpose of this study is to investigate the perceived impact of COVID-19 in the context of virtual learning for children with hematologic or oncologic disorders to inform the development of appropriate recommendations for patients and schools this fall.   Methods: Qualitative interviews assessing academic accommodations and COVID-19 adjustments to virtual learning were conducted separately with participants and their guardians by phone.  Medical histories were obtained via electronic health record.   Results: Thirty children (Mage=12.8 years, SD=1.4 years) with status post cancer treatment (n=17), sickle cell disease (n=11), or neurofibromatosis type 1 (n=2), with an IEP (n=15) or 504-plan (n=15) in place prior to COVID-19. During virtual learning, children reported a lack of interaction with teachers or other resource help. Guardians felt pressured to assist with schoolwork without sufficient support or qualifications. Anecdotally, families still expressed gratitude to their schools and teachers, revealing overall low expectations for virtual learning.   Potential Impact: This pediatric population faces unique education challenges, specific to neurocognitive impairment secondary to their chronic health conditions. Unsurprisingly, families perceived that their educational needs were not met during virtual learning related to COVID-19. To prevent the cascading effect of insufficiently addressed academic needs, the inclusion of family’s perceived experiences is critical for informing individual recommendations and the Indiana Department of Education broadly during the transition back to school this fall, both in the physical and virtual classrooms.  

2009 ◽  
Vol 4 (2) ◽  
pp. 125-129 ◽  
Author(s):  
Brian P. Walcott ◽  
Ganesh Sivarajan ◽  
Bronislava Bashinskaya ◽  
Douglas E. Anderson ◽  
John P. Leonetti ◽  
...  

Object Vestibular schwannomas (VSs) are rare in the pediatric population. Most often, these lesions manifest as a bilateral disease process in the setting of neurofibromatosis Type 2. Even in the absence of additional clinical diagnostic criteria, the presentation of a unilateral VS in a young patient may be a harbinger of future penetrance for this hereditary tumor syndrome. Methods The authors retrospectively reviewed the charts of a cohort of 7 patients who presented with apparently sporadic, unilateral VSs. These patients had previously undergone surgery via translabyrinthine, retrosigmoid, or combined approaches. Clinical outcomes were reviewed with emphasis on facial nerve function and follow-up for signs and symptoms of a heritable disorder. Results All patients underwent microsurgical resection in a multidisciplinary effort by the senior authors. The average tumor size was 4.57 cm, with an average duration of symptoms prior to definitive diagnosis of 31.2 months. The tumor size at the time of presentation followed a trend different from reports in adults, while the duration of symptoms did not. At a follow-up average of 6.3 years (range 1–12 years), 100% of patients demonstrated good facial function (House-Brackmann Grade I or II). No patient in this cohort demonstrated symptoms, objective signs, or genetic analysis indicating the presence of neurofibromatosis Type 2. Conclusions Diagnosis and management of sporadic, unilateral VSs in children is complicated by clinical presentations and surgical challenges unique from their adult counterparts. Careful consideration should be given to a heritable genetic basis for sporadic unilateral VS in the pediatric population. Results of genetic testing do not preclude the necessity for long-term follow-up and systemic investigation. In patients who present with large tumors, preliminary experience leads the authors to suggest that a combined retrosigmoid-translabyrinthine approach offers the greatest opportunity for preservation of facial nerve function.


2020 ◽  
Vol 2020 ◽  
pp. 1-7
Author(s):  
Siobhan S. Pattwell ◽  
Eric Q. Konnick ◽  
Yajuan J. Liu ◽  
Rebecca A. Yoda ◽  
Laligam N. Sekhar ◽  
...  

Pilocytic astrocytoma is a low-grade glial neoplasm of the central nervous system (CNS) that tends to occur in the pediatric population and less commonly presents in adults. Hereditary pilocytic astrocytoma is often associated with germline genetic alterations in the tumor suppressor NF1, the gene responsible for the syndrome neurofibromatosis type 1. Sporadic pilocytic astrocytoma frequently harbors somatic alterations in BRAF, with rare pilocytic astrocytomas containing alterations in FGFR1 and NTRK2. NTRK2 encodes for the protein tropomyosin receptor kinase B (TrkB), which is a neurotrophin receptor with high affinity for Brain-Derived Neurotrophic Factor (BDNF), and plays a role in several physiological functions of neurons, including cell survival and differentiation. In this report, we describe a novel PML-NTRK2 gene fusion occurring in an adult sporadic pilocytic astrocytoma and review the biology and implications of specific NTRK2 mutations occurring in CNS neoplasms.


2019 ◽  
Vol 51 (02) ◽  
pp. 170-172
Author(s):  
Janine Magg ◽  
Thomas Nägele ◽  
Michael Alber ◽  
Annette Weichselbaum ◽  
Martin Ebinger ◽  
...  

AbstractUnilateral sensorineural hearing loss is a common symptom of vestibular schwannomas in adolescent patients with neurofibromatosis type 2 or sporadic vestibular schwannomas and is often the initial clinical feature. While rare cases of sensorineural impairment presenting as vision or hearing loss due to metastatic medulloblastoma are known, hearing loss as an isolated presenting symptom of primary malignant neuroepithelial tumors of the central nervous system has not been reported in the pediatric population so far. We present two adolescents with unilateral hearing loss due to cochlear nerve dysfunction as the only symptom of a primary nonmetastatic medulloblastoma of the WNT signaling pathway family members subgroup.


1990 ◽  
Vol 2 (2) ◽  
pp. 140-148 ◽  
Author(s):  
N. Kay Covington ◽  
Darlene A. Kluka ◽  
Phyllis A. Love

This investigation compared the percentage of body fat obtained using the bioelectrical impedance technique and the anthropometric technique on a black pediatric population consisting of 196 subjects, 93 girls and 103 boys, ages 5-11 years. Subjects were measured utilizing the Bioelectrical Impedance Analyzer-103 (RJL Systems, Inc.). In order to simulate a realistic school environment, protocol was deliberately not followed. Anthropometric measurements were obtained at two sites: triceps and medial calf. The anthropometric and BIA percentages of body fat were compared using the Pearson product-moment coefficient or correlation and an ANOVA. The overall relationship between the groups was .809. Use of the BIA appears to lead to an overestimation of fatness in black children.


2013 ◽  
Vol 12 (4) ◽  
pp. 317-324 ◽  
Author(s):  
Michelle A. Holman ◽  
William R. Schmitt ◽  
Matthew L. Carlson ◽  
Colin L. W. Driscoll ◽  
Charles W. Beatty ◽  
...  

Object The aim in this study was to describe the clinical presentation, differential diagnosis, and risk for neurofibromatosis Type 2 (NF2) in pediatric patients presenting with cerebellopontine angle (CPA) and internal auditory canal (IAC) tumors. Methods The authors conducted a retrospective study at a tertiary care academic referral center. All patients with an age ≤ 18 years who had presented with an extraaxial CPA or IAC tumor between 1987 and 2012 were included in the study cohort. Data regarding symptoms, diagnosis, tumor characteristics, and NF2 status were collected and analyzed. Results Sixty patients (55% female, 45% male) harboring 87 tumors were identified. The mean age at diagnosis was 12.8 years (median 14.0 years, range 0.9–18.9 years). Schwannomas were the most commonly identified lesions (57 of 87 tumors, including 52 vestibular, 3 facial, and 2 trigeminal schwannomas), followed by meningiomas (5 of 87) and epidermoid cysts (4 of 87). Six malignant tumors were diagnosed, including small-cell sarcoma, squamous cell carcinoma, malignant meningioma, atypical rhabdoid-teratoid tumor, endolymphatic sac tumor, and malignant ganglioglioma. Headache, followed by hearing loss and imbalance, was the most common presenting symptom, whereas dysphagia, otalgia, and facial pain were uncommon. Neurofibromatosis Type 2 was diagnosed in 20 (61%) of 33 patients with vestibular schwannoma (VS), while the other 13 patients (39%) had sporadic tumors. Nineteen of the 20 patients with NF2 met the diagnostic criteria for that disorder on initial presentation, and 15 of them presented with bilateral VS. At the last follow-up, 19 of the 20 patients subsequently diagnosed with NF2 demonstrated bilateral VSs, whereas 1 patient with a unilateral VS and multiple other NF2-associated tumors has yet to demonstrate a contralateral VS to date. Only 1 patient presenting with an isolated unilateral VS and no family history of NF2 demonstrated a contralateral VS on subsequent radiological screening. Conclusions Cerebellopontine angle and IAC tumors in the pediatric population are rare. There are several noteworthy differences between the adult and pediatric populations harboring these lesions. While VS is the most common pathology in both age groups, the lesion was found in only 60% of the pediatric patients in the present study. Unlike in adults, VSs in the pediatric population were associated with NF2 in over one-half of all cases. The majority of pediatric patients with NF2 fulfilled the diagnostic criteria at initial presentation; however, approximately 7% of patients presenting with a seemingly sporadic (no family history of NF2) unilateral VS will meet the criteria for NF2 later in life. Finally, malignancies account for a significantly higher percentage (10%) of cases among pediatric patients. These findings underscore the importance of early screening and close radiological follow-up and may be helpful in patient counseling.


2021 ◽  
Vol 49 (2) ◽  
pp. 60-65
Author(s):  
Amalui Vasquez Perez ◽  
Anna Bobé Pol ◽  
Elizabeth Rua Hernandez ◽  
Marc García Lorenzo ◽  
Alba Gomez Serra ◽  
...  

Introduction and objectives: Relationship between the causal mechanisms of pediatric severe asthma and severity of symptoms would be helpful for developing personalized strategies for treatment and prevention.Materials and methods: For this study, 698 medical histories of asthmatics between 6 and 18 years of age were reviewed in a period of 2 years. Variables analyzed were: age, sex, ethnicity, perinatological history, allergy history, asthma predictive index (API), exposure to tobacco, heavy traffic or epithelium, lung function, age of onset of symptoms, hospitalization admissions/PICU, systemic corticosteroids, daily symptoms control, device prescribe for daily control, and adherence.Results: A total of 86 children with severe asthma were included (12.3%). Mean age 13.3 +/− 1.86 years, sex ratio1:1, mean age of symptom onset 2.765 +/− 3.06 years, mean IgE 1076.18KU / L +/− 1136, mean eosinophils 604c / mcl +/− 511.9, mean of FEV1 93.15% +/− 16.3. Evidently, 70 children (81.4%) had positive API, 68 (79.1%) rhinitis, 34 (39.5%) atopic dermatitis. 73 (83.9%) sensitized to inhalants and 56 (65.1%) to dermatophagoides, 39 (45.3%) passive smokers, 19 (22.1%) exposure to heavy traffic; 55 (64%) showed symptoms with exercise, 35 (40.7%) had audible wheezing. The mean systemic corticosteroid cycles/year was 3.63 +/− 3.23, mean PICU admissions 0.36 +/− 0.83, mean hospital admissions 4.31 +/− 5.3, average emergency room visits/year 19.44 +/− 16.28. 38 (56.7%) had good adherence, 44 (51%) used an MDI device and 39 (45.3%) used dry powder.Conclusions: Children with severe asthma meet the following criteria: premature, positive API, rhinitis, atopic dermatitis, high IgE, eosinophilia, passive smokers, exposure to heavy traffic, decreased lung function, and low adherence to controller medication.


2021 ◽  
Author(s):  
Arnaud Roy ◽  
Jean-Luc Roulin ◽  
Christèle Gras-Le Guen ◽  
Marie-Laure Corbat ◽  
Sébastien Barbarot

Abstract Background. To examine the impact of executive function disorders on health-related quality of life (QoL) in children with neurofibromatosis type 1 (NF1). Prospective single-center study among 40 children with NF1 aged 812 years (mean = 9.7, SD = 1.4) and their parents, comparing them with 56 healthy control children matched for age, sex, parental education level, and handedness. We collected children’s self-reports and parents’ proxy reports of QoL with the Kidscreen-52 questionnaire, and measured executive functions by combining seven performance-based tests and a daily life questionnaire completed by parents and teachers. Results. Several QoL domains were significantly impaired in the children with NF1, compared with healthy controls, according to both their self-reports (3 out of 9 scales; Cohen’s d: .40.42) and their parents’ reports (6 out of 9 scales; Cohen’s d: .34.75), with a systematic decrease in the social support and peers and school environment domains. Executive function disorders (Cohen’s d: .641.72) significantly predicted the impairment of QoL domains as perceived by the children or their parents, regardless of the indirect indicators of learning disabilities. Conclusions. Both performance-based executive function scores and behavior ratings of executive functions in daily life by parents and teachers were associated with low QoL levels in the children with NF1. The school environment and social integration appear to be particularly affected, and should therefore be targeted in the management of the disease. 227 words


2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Arnaud Roy ◽  
Jean-Luc Roulin ◽  
Christèle Gras-Le Guen ◽  
Marie-Laure Corbat ◽  
Sébastien Barbarot

Abstract Background To examine the impact of executive function disorders on health-related quality of life (QoL) in children with neurofibromatosis type 1 (NF1), we conducted a prospective single-center study among 40 children with NF1 aged 8–12 years (mean = 9.7, SD = 1.4) and their parents, comparing them with 56 healthy control children matched for age, sex, parental education level, and handedness. We collected children’s self-reports and parents’ proxy reports of QoL with the Kidscreen-52 questionnaire, and measured executive functions by combining seven performance-based tests and a daily life questionnaire completed by parents and teachers. Results Several QoL domains were significantly impaired in the children with NF1, compared with healthy controls, mainly according to their parents’ reports (3 out of 9 scales; Cohen’s d: 0.57–0.76), with particularly low scores in the social support and peers and school environment domains. Executive function difficulties (Cohen’s d: 0.64–1.72) significantly predicted the impairment of QoL domains as perceived by the children or their parents, regardless of the indirect indicators of learning disabilities. Conclusions Both performance-based executive function scores and behavioral ratings of executive functions in daily life by parents and teachers were associated with low QoL levels in the children with NF1. The school environment and social integration appear to be particularly affected and should therefore be targeted in the management of the disease.


2001 ◽  
Vol XXXIII (3-4) ◽  
pp. 99-99
Author(s):  
P. Weisleder ◽  
T. Fife

Dizziness is known to be a common concomitant symptom of migraine attacks in adults. In the pediatric population, the association of clinical symptoms is less obvious. The authors examined the medical histories of children and adolescents (31 cases in total) who underwent special testing of vestibular functions from July 1994 to July 2000.


2015 ◽  
Vol 5 (3) ◽  
pp. 64-69
Author(s):  
Aleksandra Michalska

Abstract This paper presents the impact of health education on life expectancy and adaption to modern conditions. The acquisition of healthy attitude in the first and second decade of life influences the development of trade, economic status and helps efficiently cope with stress. The article highlights the impact of “health literacy”, the school environment and family upbringing and subsequent persistence in health. Organization of education should be started from childhood. Unfortunately many teachers and parents cannot supply information about sanitary education, correct sanitation, healthy nutrition and physical activity. Disciples who lack support and knowledge can be exposed under pressure of contemporary risky operations. Pediatric population makes up to 30 % of the whole population. In the first and second decade of life the baby is shaped and strengthens previously instilled habits. Stage of puberty is the most favorable moment for proper physical development of young people. During this period perpetuate conscious health behaviors, but at the same time there are health risk behaviors. These behaviors affect the quality and duration in health. Measures of health policy on school-age children should be focused primarily on prevention and health promotion.


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