A Bittersweet Score: A Father’s Account of His Family’s 20-Year Journey After a Pediatric Brain Tumor Diagnosis

2014 ◽  
Vol 4 (1) ◽  
pp. 3-6
Author(s):  
Christopher Riley
Keyword(s):  
Brain Tumor ◽  
Pediatric Brain Tumor ◽  
Tumor Diagnosis ◽  
Brain Tumor Diagnosis ◽  
Pediatric Brain

scholarly journals The Many Roles of the Rock: A Qualitative Inquiry into the Roles and Responsibilities of Fathers of Children with Brain Tumors

Children ◽  
2019 ◽  
Vol 6 (10) ◽  
pp. 113 ◽  
Author(s):  
Jacob E. Robinson ◽  
David Huskey ◽  
Jonathan Schwartz ◽  
Meaghann S. Weaver
Keyword(s):  
Palliative Care ◽  
Brain Tumor ◽  
Brain Tumors ◽  
Personal Growth ◽  
Pediatric Brain Tumor ◽  
Qualitative Inquiry ◽  
Tumor Diagnosis ◽  
Support Needs ◽  
Brain Tumor Diagnosis ◽  
Pediatric Brain

A pediatric brain tumor diagnosis impacts an entire family unit, from diagnosis through curative treatment, and into survivorship or bereavement. Paternal caregiver experience has been significantly underexplored in pediatric neuro-oncology research as compared to maternal experience. This case series study explores the paternal roles, responsibilities, strengths, challenges, personal growth, and support needs of fathers of children with brain tumors receiving new palliative care consultations. In the study setting, a neuro-oncology diagnosis results in an automatic referral to the palliative care team, and thus, a convenience sampling model was employed based on consecutive palliative care consults for new childhood brain tumor diagnoses. In this study, four fathers of pediatric brain tumor patients receiving palliative care consultations responded to eight open-ended questions. Individual, voice-recorded interviews were transcribed for semantic content qualitative analysis. Analysis followed Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines. Participants completed quantitative surveys of their information preferences and support needs. Participants defined their father role as: being a team parent, an adaptable father, supporter, provider, a present father, and protector. Role conflict due to paternal responsibilities were recognized, such as the absence from the hospital to provide financial security for the family, and yet a desire to be physically present for the child. Fathers prioritized their knowledge needs about their child’s diagnosis, prognosis, and treatment above emotional needs. Fathers shared experiences of their personal growth through their child’s brain tumor diagnosis and advised on preferred support formats to include both verbal and written information. Understanding how paternal caregivers of children with cancer define their roles and goals has potential to improve the care and communication delivered to families of pediatric neuro-oncology patients.

Prevalence of attention-deficit/hyperactivity disorder in pediatric brain tumor survivors.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. 10572-10572
Author(s):  
Emily Kauvar Shabason ◽  
Cole Brodsky ◽  
Julie Baran ◽  
Wendy Hobbie ◽  
Jane E. Minturn ◽  
...  
Keyword(s):  
Attention Deficit Hyperactivity Disorder ◽  
Radiation Therapy ◽  
Brain Tumor ◽  
Attention Deficit ◽  
Pediatric Brain Tumor ◽  
Tumor Diagnosis ◽  
Adhd Diagnosis ◽  
Hyperactivity Disorder ◽  
Brain Tumor Diagnosis ◽  
Pediatric Brain

10572 Background: Pediatric brain tumor survivors (PBTS) often have neurodevelopmental late effects, including attention and concentration deficits, which may impact cognitive and academic functioning. Such symptoms are also seen in attention-deficit/hyperactivity disorder (ADHD), which affects ~5-8% of children and adolescents. This study examined the prevalence of ADHD diagnosis and ADHD medication use in PBTS and identified higher risk subsets of patients. Methods: A retrospective chart review was completed of PBTS (n = 106), diagnosed from 1999-2013, who were at least 2 years from the end of tumor-directed therapy (surgery, chemotherapy and/or radiation therapy) and without a multi-system genetic disorder or severe developmental delay prior to brain tumor diagnosis. Subjects were already screened for or enrolled in 3 other studies of PBTS late effects. Statistical analysis involved chi-squared analysis. Results: Among the 106 patients, 55.7% were male, with an average age at time of brain tumor diagnosis of 5.9 years (0-12.2 years). The most common tumor types were glioma (51.9% with 47.2% low grade, 4.7% high grade), medulloblastoma (13.2%) and ependymoma (11.3%), with 50% of tumors supratentorial, 46.2% infratentorial and 3.8% either extending or multifocal across the tentorium. Of the patients, 42.5% received radiation therapy, 38.7% chemotherapy and 86.8% surgery. Nineteen patients (17.9%) had ADHD diagnoses, and 20 (18.9%) had been on ADHD medications. Clinical factors associated with an ADHD diagnosis were supratentorial vs. infratentorial tumors (28.3% vs. 6.1%, p = 0.013), no radiation therapy vs. radiation therapy (27.9% vs. 4.4%, p = 0.002) and no chemotherapy vs. chemotherapy (24.6% vs. 7.3%, p = 0.024). ADHD diagnosis was not associated with age of brain tumor diagnosis or surgical treatment. Conclusions: Our study suggests that PBTS have over twice the ADHD prevalence as the general population, most notably in patients with supratentorial tumors or without a history of radiation therapy or chemotherapy. The results suggest that a closer look at this population is warranted and that select patients may benefit from behavioral or pharmacologic ADHD treatments to optimize functioning.

scholarly journals IMMU-21. INVESTIGATION OF WHITE BLOOD CELL CHARACTERISTICS IN CSF SAMPLES AT PEDIATRIC BRAIN TUMOR DIAGNOSIS

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii364-iii364
Author(s):  
Hunter Greer ◽  
Kristen Campbell ◽  
Sadaf Samay ◽  
Adam Green
Keyword(s):  
Brain Tumor ◽  
Tumor Cell ◽  
Pediatric Brain Tumor ◽  
High Grade Glioma ◽  
Pediatric Brain Tumors ◽  
Tumor Diagnosis ◽  
Low Grade ◽  
Brain Tumor Diagnosis ◽  
Pediatric Brain ◽  
Insight Into

Abstract BACKGROUND There has been a recent surge in investigation of immunity and immunotherapy, but their role in pediatric brain tumors is incompletely defined. We hypothesized that investigating an understudied dataset, WBC and differential results in CSF drawn at the time of pediatric brain tumor diagnosis to look for microscopic metastases, would provide insight into the role of immunology and potential for immunotherapy in these diseases and correlate with prognosis and/or metastasis. METHODS We conducted a retrospective comparison analysis of CSF values in 349 patients at our institution from samples drawn within 60 days of initial CNS tumor diagnosis from 1998–2018. We examined total nucleated cell count, absolute counts and percentages for WBC subtypes. We compared CSF values by tumor cell presence, patient vital status, and disease group: atypical teratoid rhabdoid tumor, ependymoma, germinoma, high-grade glioma (HGG), low-grade glioma (LGG), medulloblastoma, non-germinomatous germ cell tumor, and other embryonal tumors (OET). We used Wilcoxon and Kruskal-Wallis tests for comparisons. RESULTS Overall, higher lymphocyte percentage (p=0.002) and lower monocyte percentage (p=0.007) were associated with survival. WBC characteristics did not differ significantly based on tumor cell presence. Compared to medulloblastoma, ependymoma showed a more active CSF immune response, while LGG, HGG, and OET showed a less active response, based on total WBC and/or absolute neutrophil count (p=0.001–0.007). CONCLUSIONS Higher lymphocyte and lower monocyte percentages in CSF correlated with better prognosis overall; causality requires further investigation. Tumor subtypes varied in their immune stimulation, offering potential insight into which will be amenable to immunotherapy.

The Pediatric Brain Tumor Preclinical Testing Program: an update on the current status

2012 ◽  
Vol 224 (06) ◽  
Author(s):  
T Milde ◽  
M Zucknick ◽  
M Kool ◽  
A Korshunov ◽  
H Witt ◽  
...  
Keyword(s):  
Brain Tumor ◽  
Pediatric Brain Tumor ◽  
Current Status ◽  
Preclinical Testing ◽  
Testing Program ◽  
Pediatric Brain

scholarly journals A pediatric brain tumor atlas of genes deregulated by somatic genomic rearrangement

2021 ◽  
Vol 12 (1) ◽  
Author(s):  
Yiqun Zhang ◽  
Fengju Chen ◽  
Lawrence A. Donehower ◽  
Michael E. Scheurer ◽  
Chad J. Creighton
Keyword(s):  
Brain Tumor ◽  
Brain Tumors ◽  
Tyrosine Kinases ◽  
Pediatric Brain Tumor ◽  
Pediatric Brain Tumors ◽  
Altered Expression ◽  
Critical Pathways ◽  
Cis Regulation ◽  
Or Gene ◽  
Pediatric Brain

AbstractThe global impact of somatic structural variants (SSVs) on gene expression in pediatric brain tumors has not been thoroughly characterised. Here, using whole-genome and RNA sequencing from 854 tumors of more than 30 different types from the Children’s Brain Tumor Tissue Consortium, we report the altered expression of hundreds of genes in association with the presence of nearby SSV breakpoints. SSV-mediated expression changes involve gene fusions, altered cis-regulation, or gene disruption. SSVs considerably extend the numbers of patients with tumors somatically altered for critical pathways, including receptor tyrosine kinases (KRAS, MET, EGFR, NF1), Rb pathway (CDK4), TERT, MYC family (MYC, MYCN, MYB), and HIPPO (NF2). Compared to initial tumors, progressive or recurrent tumors involve a distinct set of SSV-gene associations. High overall SSV burden associates with TP53 mutations, histone H3.3 gene H3F3C mutations, and the transcription of DNA damage response genes. Compared to adult cancers, pediatric brain tumors would involve a different set of genes with SSV-altered cis-regulation. Our comprehensive and pan-histology genomic analyses reveal SSVs to play a major role in shaping the transcriptome of pediatric brain tumors.

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