scholarly journals Impact of the social deprivation on the psychosocial difficulties of pediatric cancer survivors: a prospective multicentric study

2021 ◽  
Author(s):  
Fanny Delehaye ◽  
Olivier Dejardin ◽  
isabelle pellier ◽  
Ludivine Launay ◽  
Maxime Esvan ◽  
...  
Keyword(s):  
Pediatric Cancer ◽  
Social Deprivation ◽  
Learning Difficulties ◽  
Cns Tumors ◽  
Psychosocial Effects ◽  
Multicentric Study ◽  
Deprivation Score ◽  
Psychosocial Difficulties ◽  
Posttreatment Period ◽  
Psychological Difficulties

Background The posttreatment period is a key part of the management of pediatric cancer care. At this period, psychosocial effects (scholarly and psychological difficulties) have been described in pediatric cancer patients and can be prognostic for the success of social reintegration. Psychosocial effects and their impact may be related to the household’s socioeconomic background. The aim of this study was to estimate psychosocial difficulties during the posttreatment period based on a social deprivation score. Design This study is based on a prospective multicentric study database, and focused on the children who had received psychosocial evaluation during their follow-up after cancer treatment since 01/01/2013. We retrieved data on their learning and psychological difficulties. Socioeconomic status of the household was estimated by a social deprivation score. Results 1003 patients were analyzed. Learning difficulties at school were noted in 22% of patients. A greater social deprivation was significantly associated with learning difficulty (OR=1.09 per unit of the deprivation score). Tumor relapse, treatment with hematopoietic stem cell transplantation, and diagnosis of a CNS tumor remained significant risk factors. In the subgroup analysis of children with CNS tumors, learning difficulties were increased and associated with greater social deprivation. By contrast, psychological difficulties were not associated with the deprivation score. Conclusion There is a link between SE status and learning difficulties in survivors of childhood cancer. Further investigations should be carried out to confirm these results for children with CNS tumors, which is the population of the greatest concern.

Psychosocial Status of Turkish Families of Pediatric Cancer Patients

2019 ◽  
Vol 31 (3) ◽  
pp. 227-241
Author(s):  
Melike Ayca Ay ◽  
Imatullah Akyar
Keyword(s):  
Cancer Patients ◽  
Pediatric Cancer ◽  
Family Members ◽  
Psychosocial Care ◽  
Psychosocial Interventions ◽  
Care Quality ◽  
Psychosocial Effects ◽  
Pediatric Cancer Patients ◽  
Sample Characteristics

Introduction: In some countries, family members are not involved in routine pediatric cancer psychosocial care although it is essential. This integrative review aims to determine the extent of research on family members of pediatric cancer patients in Turkey. Method: Four main keywords were used: parent/sibling/family, child/pediatric, cancer and psychosocial outcomes to search articles on PubMed, EKUAL, ULAKBİM, WOS databases (limited to 1997-2017). Among first 317 hits, 284 records were excluded. Of 33 eligible articles, 14 were excluded due to sample characteristics. Results: Research on psychosocial effects of pediatric cancer on family members is mostly descriptive and offers moderate-quality evidence. The reported psychosocial effects are (1) depression, anxiety, hopelessness, acceptance; (2) burden of care, quality of life, posttraumatic stress disorder; and (3) need for social support, information. Discussion: This study will contribute to the literature and help for the planning of protective psychosocial interventions for family members of children with cancer in Turkey.

scholarly journals Validation of the ‘EPICES’ social deprivation score in a population of women who have just given birth: a French cross-sectional study

Public Health ◽  
2021 ◽  
Vol 201 ◽  
pp. 19-25
Author(s):  
S.M. Zadeh ◽  
S. Léger ◽  
C. Guiguet-Auclair ◽  
D. Gallot ◽  
M.-P. Celse ◽  
...  
Keyword(s):  
Social Deprivation ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Deprivation Score

scholarly journals Retrospective Multicentric Study on Non-Optic CNS Tumors in Children and Adolescents with Neurofibromatosis Type 1

Cancers ◽  
2020 ◽  
Vol 12 (6) ◽  
pp. 1426
Author(s):  
Claudia Santoro ◽  
Stefania Picariello ◽  
Federica Palladino ◽  
Pietro Spennato ◽  
Daniela Melis ◽  
...  
Keyword(s):  
Neurofibromatosis Type 1 ◽  
Age At Onset ◽  
Young Patients ◽  
Progression Free Survival ◽  
Neurofibromatosis Type ◽  
Cns Tumors ◽  
Optic Pathway Glioma ◽  
Low Grade ◽  
Multicentric Study

The natural history of non-optic central nervous system (CNS) tumors in neurofibromatosis type 1 (NF1) is largely unknown. Here, we describe prevalence, clinical presentation, treatment, and outcome of 49 non-optic CNS tumors observed in 35 pediatric patients (0–18 years). Patient- and tumor-related data were recorded. Overall survival (OS) and progression-free survival (PFS) were evaluated. Eighteen patients (51%) harbored an optic pathway glioma (OPG) and eight (23%) had multiple non-optic CNS lesions. The majority of lesions (37/49) were managed with a wait-and-see strategy, with one regression and five reductions observed. Twenty-one lesions (42.9%) required surgical treatment. Five-year OS was 85.3%. Twenty-four patients progressed with a 5-year PFS of 41.4%. Patients with multiple low-grade gliomas progressed earlier and had a lower 5-year PFS than those with one lesion only (14.3% vs. 57.9%), irrespective of OPG co-presence. Non-optic CNS tumors are common in young patients with NF1. Neither age and symptoms at diagnosis nor tumor location influenced time to progression in our series. Patients with multiple lesions tended to have a lower age at onset and to progress earlier, but with a good OS.

scholarly journals OMIC-09. MAPPING THE HISTONE MUTATIONAL LANDSCAPE ACROSS ADULT AND PEDIATRIC CANCER GENOMES UNCOVERS NOVEL SOMATIC MUTATIONS IN PEDIATRIC HIGH-GRADE GLIOMAS

2021 ◽  
Vol 23 (Supplement_1) ◽  
pp. i39-i39
Author(s):  
Erin Bonner ◽  
Krutika Gaonkar ◽  
Payal Jain ◽  
Yuankun Zhu ◽  
Sandra Laternser ◽  
...  
Keyword(s):  
Pediatric Cancer ◽  
Cns Tumors ◽  
Cns Lymphoma ◽  
Histone Genes ◽  
High Grade ◽  
Core Proteins ◽  
Cancer Genomes ◽  
High Grade Gliomas ◽  
Pan Cancer ◽  
Pediatric Cns Tumors

Abstract There is a growing role for mutations affecting histone linker and histone core-encoding genes across several adult and pediatric cancers. However, the extent to which somatic histone mutations may bridge across different cancers as common tumorigenic events – particularly in the context of pediatric CNS tumors – remains unclear. To address this knowledge gap, we set out to define a comprehensive pan-cancer landscape of somatic histone mutations. We first queried the ICGC PCAWG and TCGA Pan-Cancer Atlas representing >12,500 adult and pediatric cancer patients. We found lymphomas to be most enriched for histone mutations (50–75%) and, in particular, for mutations in linker histones (HIST1H1B-E), yet also in specific core histone genes (eg, HIST2H2BE). Moreover, we observed a significant enrichment of histone mutations in adult high-grade vs low-grade gliomas (10% vs 6%, P<0.05, n=922 patients). Interrogation of whole genome data from 800 pediatric CNS tumor genomes (PBTA/OpenDIPG), identified novel (non-H3K27/non-H3G34) somatic histone mutations in 5–10% of subjects, including pediatric high-grade gliomas (pHGGs) and diffuse midline gliomas (DMGs). We found an overlapping set of histone genes to be recurrently mutated in non-CNS cancers and pediatric CNS tumors alike (eg, HIST1H1B/C/E). Notably, the only pediatric primary CNS lymphoma patient also harbored a histone linker alteration (HIST1H1B), similar to adult non-CNS lymphoma patients. We validated novel somatic histone mutations in DMGs by Sanger sequencing. Ongoing studies include in vitro assessment of the impact of these mutations on cell proliferation, chromatin accessibility, histone spacing, and gene expression. In addition, we will further assess associations with clinical outcome, age, and tumor subtypes. Collectively, oncohistone vulnerabilities were identified and defined as histone gene families recurrently mutated across all cancer types. Our analyses of adult and pediatric cancer genomes have uncovered previously unknown mutations affecting histone linker and core proteins, which may play a yet-undefined role in tumor etiology.

A therapeutic group for young people with diverse gender identifications

2018 ◽  
Vol 24 (2) ◽  
pp. 241-257
Author(s):  
Sarah Davidson ◽  
Annabelle Morrison ◽  
Elin Skagerberg ◽  
Ian Russell ◽  
Anna Hames
Keyword(s):  
Social Support ◽  
Young People ◽  
Identity Development ◽  
Peer Relationships ◽  
Support Groups ◽  
Therapeutic Group ◽  
Negative Experiences ◽  
Qualitative And Quantitative ◽  
Psychosocial Difficulties ◽  
Psychological Difficulties

Young people are presenting to specialist gender services in higher numbers than before and many with significant psychosocial difficulties. Negative experiences of stigma, difficult peer relationships and discrimination exacerbate distress and psychological difficulties, negatively impacting wellbeing and resilience. Social support is advocated as a means of supporting young people with diverse gender identifications, such as through peer support groups. This article describes the establishment of a young persons’ group in 2011 within the United Kingdom’s Gender Identity Development Service (GIDS), for those attending the service as a means of enabling their coping with difficult experiences and facilitating their wellbeing and resilience through effective social support. The group was evaluated using qualitative and quantitative measures and has subsequently run each year. Now in its sixth year, the authors reflect on their learning and experiences.

Psychosocial Effects of Transfusion-Related HIV Infection in Pediatric Cancer Patients

1991 ◽  
Vol 8 (4) ◽  
pp. 41-58
Author(s):  
Andrea Farkas Patenaude ◽  
Stanley Berman ◽  
Deborah Hirsch ◽  
Joanna Breyer ◽  
Judith Astbury ◽  
...  
Keyword(s):  
Hiv Infection ◽  
Cancer Patients ◽  
Pediatric Cancer ◽  
Psychosocial Effects ◽  
Pediatric Cancer Patients

Assessment of enrollment characteristics for Children’s Oncology Group (COG) upfront therapeutic clinical trials 2004-2015.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 6564-6564
Author(s):  
Kelly Faulk ◽  
Amy Anderson-Mellies ◽  
Myles Cockburn ◽  
Adam Green
Keyword(s):  
Clinical Trials ◽  
Pediatric Cancer ◽  
Cancer Survival ◽  
Comprehensive Evaluation ◽  
Hematologic Malignancies ◽  
Cns Tumors ◽  
Oncology Group ◽  
Eligibility Criteria ◽  
Younger Patients ◽  
Enrollment Rates

6564 Background: Improvements in pediatric cancer survival are attributed to cooperative clinical trials. Under representation of specific demographic groups has been described in adult and pediatric cancer and poses a threat to the generalizability of trial results. A comprehensive evaluation of data provided by the Children’s Oncology Group (COG) of upfront trial enrollment for US patients 0 to 29 years old between 2004 and 2015 was performed to assess for disparities in participation. Methods: Estimates of cancer cases were calculated using the Surveillance, Epidemiology, and End Results registry and the US Census and compared to observed COG cases. Percent enrollment and Standardized Ratios of enrollment were calculated across various demographic, disease, and socioeconomic groups. The COG website was utilized to quantify available upfront trials during the study period and assess age eligibility criteria. Results: 21.3% of estimated US cancer patients age 0 to 19 years enrolled on COG trials. Younger patients were consistently more represented across disease types and race/ethnicities. Patients with hematologic malignancies were more represented compared to solid and central nervous system (CNS) tumors. Conclusions: COG clinical trial enrollment rates are declining, which may be due to challenges in pediatric drug development, difficulty designing feasible trials for highly curable diseases, and issues in ensuring trial availability for the heterogeneous group of solid and CNS tumors. Though racial/ethnic groups and county-level socioeconomic factors were proportionally represented, under representation of the adolescent/young adult (AYA) population and younger patients with solid and CNS tumors remain significant concerns. Targeted enrollment efforts should focus on the identified subgroups and further research should evaluate AYA enrollment across all available trials to provide continued treatment advances for all patients.

scholarly journals EPID-07. A GLOBAL PERSPECTIVE ON THE BURDEN OF PEDIATRIC CENTRAL NERVOUS SYSTEM TUMORS

2020 ◽  
Vol 22 (Supplement_3) ◽  
pp. iii320-iii320
Author(s):  
Daniel Moreira ◽  
Ibrahim Qaddoumi ◽  
Nickhill Bhakta ◽  
Amar Gajjar ◽  
Carlos Rodriguez-Galindo
Keyword(s):  
Central Nervous System ◽  
Nervous System ◽  
World Bank ◽  
Low Income ◽  
Pediatric Cancer ◽  
Survival Data ◽  
Global Perspective ◽  
Cns Tumors ◽  
Global Burden ◽  
Incident Cases

Abstract Although approximately 90% of pediatric cancer cases exist in low- and middle-income countries, the magnitude of the global burden of pediatric central nervous system (CNS) tumors remains poorly quantified. METHODS: Data from International Incidence of Childhood Cancer-3 and CONCORD-3, which include observed incidence and survival from population-based cancer registries (PBCR), and from GLOBOCAN 2018 and Global Burden of Disease 2016, which produce burden estimates from observed and modelled data, were used to analyze epidemiologic characteristics and correlations for CNS tumors globally. Data from The World Bank were used for national macroeconomic variables. RESULTS: The majority of countries are not covered by PBCR, with information on incidence and survival available for 37% and 27% of countries, respectively. Survival data is not available for any low-income country. The incidence of CNS tumors varies markedly, from 0.4 to 49 x106 person-years, the greatest variability in pediatric cancer subgroups. Modelled data suggests that approximately 40,000 incident cases and 19,000 deaths occur from CNS tumors worldwide. When country-level data are segregated based on World Bank groups, a difference in incidence and survival exists (p<0.05). A higher national health expenditure correlates with both an increased incidence and survival of CNS tumors, while the inverse is true for under-5 mortality (p<0.05). CONCLUSIONS: Scarce facts are available, but this analysis establishes a link between national income and epidemiologic parameters for CNS tumors. In this context, carefully designed initiatives, focusing on a health-systems approach are critical to meet the global challenge of pediatric CNS tumors.

Implementation and evaluation of clinical exome sequencing in childhood cancer care: The BASIC3 study.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 10023-10023 ◽  
Author(s):  
Donald W. Parsons ◽  
Murali M. Chintagumpala ◽  
Stacey L. Berg ◽  
Dolores H. López-Terrada ◽  
Angshumoy Roy ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Exome Sequencing ◽  
Pediatric Cancer ◽  
Cancer Care ◽  
Clinical Utility ◽  
Cancer Susceptibility ◽  
Genetic Counselor ◽  
Cns Tumors ◽  
Clinical Exome Sequencing ◽  
Pediatric Cancer Patients

10023 Background: Advances in sequencing technologies allow for provision of genome-scale data to oncologists and geneticists caring for pediatric cancer patients. The goal of the BASIC3 (Baylor Advancing Sequencing into Childhood Cancer Care) study is to determine the clinical impact of incorporating CLIA-certified tumor and constitutional exome sequencing into the care of children with newly diagnosed solid tumors. Methods: Blood and frozen tumor samples obtained at initial surgery are submitted for clinical exome sequencing (target enrollment 280 patients). Results are deposited into the electronic medical record and disclosed to families by their oncologist and a genetic counselor. Identification of germline cancer susceptibility mutations is compared with standard testing practices. Oncologists are surveyed on prioritization of treatment options in the hypothetical event of tumor recurrence before and after receiving tumor exome results. Patients will be followed for two years to assess the clinical utility of exome data. Preferences for reporting this complex information are obtained by interviews and audiorecording of disclosure visits. Results: Initial results reveal that41 of 49 (84%) ethnically diverse families have consented to enroll on study. Adequate tumor samples were available from 35 of 41 patients (85%), including 11 of 15 (73%) patients with CNS tumors and 24 of 26 (92%) with non-CNS tumors. Pathogenic germline cancer susceptibility mutations (TP53, MSH2) were reported in 2 of the first 11 patients, with a medically-actionable mutation in a gene (SCN5A) unrelated to cancer in 1 patient and 0-4 (median of 2) recessive carrier mutations per patient. Between 9 and 33 protein altering mutations (median of 11) have been identified in tumors, including known cancer genes such as TP53 and others with no known link to pediatric cancer. Conclusions: A robust clinical pipeline for exome sequencing of blood and tumor samples has been successfully developed with significant parental interest. Data assessing the clinical utility of both the tumor and constitutional exomes and the preferences of oncologists and parents for reporting of these results are under study. Supported by NHGRI 1U01HG006485.

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