International Confederation of Childhood Cancer Parent Organizations Parent Organisations: Partners in the Care for Children with Cancer

2016 ◽  
pp. 751-753
Author(s):  
Marianne C. Naafs-Wilstra
Keyword(s):  
Childhood Cancer ◽  
Children With Cancer ◽  
Parent Organizations

scholarly journals Proportion of children with cancer that have an indication for genetic counseling and testing based on the cancer type irrespective of other features

2021 ◽  
Author(s):  
Thi Minh Kha Nguyen ◽  
Astrid Behnert ◽  
Torsten Pietsch ◽  
Christian Vokuhl ◽  
Christian Peter Kratz
Keyword(s):  
Childhood Cancer ◽  
Rhabdoid Tumor ◽  
Juvenile Myelomonocytic Leukemia ◽  
Cancer Type ◽  
Nerve Sheath Tumor ◽  
Children With Cancer ◽  
Pediatric Pathology ◽  
Cancer Trial ◽  
Cancer Predisposition Syndrome ◽  
Cancer Types

Abstract In children with cancer, specific clinical features such as physical anomalies, occurrence of cancer in young relatives, specific cancer histologies, and unique mutation/methylation signatures may indicate the presence of an underlying cancer predisposition syndrome (CPS). The proportion of children with a cancer type suggesting a CPS among all children with cancer is unknown. To determine the proportion of children with cancer types suggesting an underlying CPS among children with cancer. We evaluated the number of children with cancer types strongly associated with CPS diagnosed in Germany between 2007 and 2016. Data were obtained from various sources including two national pediatric pathology reference laboratories for brain and solid tumors, respectively, various childhood cancer trial offices as well as the German Childhood Cancer Registry. Among 21,127 children diagnosed with cancer between 2007 and 2016, 2554 (12.1%) had a cancer type strongly associated with a CPS. The most common diagnoses were myelodysplastic syndrome and juvenile myelomonocytic leukemia, retinoblastoma, malignant peripheral nerve sheath tumor, infantile myofibromatosis, medulloblastomaSHH, rhabdoid tumor as well as atypical teratoid/rhabdoid tumor. Based on cancer type only, 12.1% of all children with cancer have an indication for a genetic evaluation. Pediatric oncology patients require access to genetic counselling and testing.

scholarly journals Selection criteria for assembling a pediatric cancer predisposition syndrome gene panel

2021 ◽  
Author(s):  
Anna Byrjalsen ◽  
Illja J. Diets ◽  
Jette Bakhuizen ◽  
Thomas van Overeem Hansen ◽  
Kjeld Schmiegelow ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Pediatric Cancer ◽  
Causal Relation ◽  
Evaluation Criteria ◽  
Cancer Predisposition ◽  
Gene Panel ◽  
Childhood Onset ◽  
Children With Cancer ◽  
Cancer Predisposition Syndrome ◽  
A Prospective Study

AbstractIncreasing use of genomic sequencing enables standardized screening of all childhood cancer predisposition syndromes (CPS) in children with cancer. Gene panels currently used often include adult-onset CPS genes and genes without substantial evidence linking them to cancer predisposition. We have developed criteria to select genes relevant for childhood-onset CPS and assembled a gene panel for use in children with cancer. We applied our criteria to 381 candidate genes, which were selected through two in-house panels (n = 338), a literature search (n = 39), and by assessing two Genomics England’s PanelApp panels (n = 4). We developed evaluation criteria that determined a gene’s eligibility for inclusion on a childhood-onset CPS gene panel. These criteria assessed (1) relevance in childhood cancer by a minimum of five childhood cancer patients reported carrying a pathogenic variant in the gene and (2) evidence supporting a causal relation between variants in this gene and cancer development. 138 genes fulfilled the criteria. In this study we have developed criteria to compile a childhood cancer predisposition gene panel which might ultimately be used in a clinical setting, regardless of the specific type of childhood cancer. This panel will be evaluated in a prospective study. The panel is available on (pediatric-cancer-predisposition-genepanel.nl) and will be regularly updated.

Varicella in Children With Cancer: Seventy-Seven Case

PEDIATRICS ◽  
1975 ◽  
Vol 56 (3) ◽  
pp. 388-397 ◽  
Author(s):  
Sandor Feldman ◽  
Walter T. Hughes ◽  
C. B. Daniel
Keyword(s):  
Mortality Rate ◽  
General Population ◽  
Childhood Cancer ◽  
Cancer Patients ◽  
Anticancer Therapy ◽  
Children With Cancer ◽  
Acute Encephalitis

The purpose of this study was to characterize varicella in childhood cancer patients. Seventeen of the 77 patients reviewed were in remission and off all therapy for 3 to 22 months. No one in this group died from varicella or had evidence of visceral dissemination. Among the remaining 60 patients, all of whom were receiving anticancer therapy when they developed vancella, 19 (32%) had visceral dissemination and 4 died, for a mortality rate of 7%. Each of the deaths was associated with primary varicella pneumonitis, with or without acute encephalitis. Visceral dissemination was not related to type or status of malignancy or to duration of specific anticancer therapy. Varicella was more likely to disseminate in children with absolute lymphopenia, less than 500 cells per cubic millimeter, than in patients with higher lymphocyte counts. Cessation of anticancer therapy prior to the onset of lesions appeared to lessen the risk of dissemination. These results show that varicella is more severe in cancer patients on therapy than in the general population or in patients who have completed therapy, but is not highly fatal.

The Impact of a Childhood Cancer Diagnosis on the Children and Siblings’ School Attendance, Performance, and Activities: A Qualitative Descriptive Study

2017 ◽  
Vol 35 (2) ◽  
pp. 118-131 ◽  
Author(s):  
Argerie Tsimicalis ◽  
Laurence Genest ◽  
Bonnie Stevens ◽  
Wendy J. Ungar ◽  
Ronald Barr
Keyword(s):  
Childhood Cancer ◽  
School Attendance ◽  
Productivity Loss ◽  
Descriptive Study ◽  
Semistructured Interview ◽  
Children With Cancer ◽  
Productivity Cost ◽  
Cost Study ◽  
Qualitative Descriptive ◽  
The Impact

Families of children with cancer are confronted with unexpected out-of-pocket expenses and productivity costs associated with the diagnosis. One productivity cost that falls on children is the impact of cancer on children’s school attendance, performance, and activities (eg, play, friendships, and socialization). Nested within the Childhood Cancer Cost Study, this qualitative descriptive study used convenience sampling to recruit and interview parents of children newly diagnosed with cancer. Content analysis techniques were used to inductively descriptive the semistructured interview data. Sixty-six parents of 65 children with cancer and of 73 siblings participated. The most commonly reported productivity loss in children with cancer was school absenteeism mainly due to cancer treatment. Children fell behind their classmates academically and lost important social time with peers. A few siblings also fell behind their peers primarily due to limited parental attention. Parents adopted various strategies to lessen the impact of the diagnosis on their children’s school attendance, performance, and activities. Providing parents with additional resources and support may optimize their children’s academic and social reintegration into school.

My child matters program: A UICC-sanofi-aventis partnership to improve pediatric cancer care in developing countries

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9526-9526 ◽  
Author(s):  
R. C. Ribeiro ◽  
T. Eden ◽  
J. Hartford ◽  
J. Lemerle ◽  
I. Magrath ◽  
...  
Keyword(s):  
Developing Countries ◽  
Access To Care ◽  
Childhood Cancer ◽  
Low Income ◽  
Professional Education ◽  
Cancer Care ◽  
Developed Countries ◽  
Political Support ◽  
Outcome Analysis ◽  
Children With Cancer

9526 Background: Despite dramatic advances in curing childhood cancer in developed countries, most children with cancer live in low-income countries, where misdiagnosis, late diagnosis, lack of access to treatment and abandonment of treatment hinder progress. Methods: In 2004 the International Union against Cancer and sanofi-aventis initiated a campaign to improve childhood cancer care in developing countries through grants for local projects (up to 50,000 euros/year each), a survey of childhood cancer care (conducted by the public health consulting firm Sanisphere), and lobbying to increase political support. The projects focus on professional education, improved access to care, pain management, and psychosocial/educational support. Results: During 2006, 14 pilot projects in Bangladesh, Egypt, Honduras, Morocco, Philippines, Senegal, Tanzania, Ukraine, Venezuela, and Vietnam were selected on the basis of feasibility, expected benefit, sustainability, and potential to serve as models. Only eight countries had pediatric hematology/oncology units, ranging from 20 (Tanzania) to 350 (Egypt) beds. These units manage 100 (Senegal) to 1,000 (Bangladesh) children with cancer per year (a small fraction of actual cases in these countries). One-year outcome analysis showed that various short-term objectives were met, including improved patient care infrastructure, public and professional education, earlier detection, improved access to care, the introduction of psychosocial support, decreased abandonment and better follow up. On the basis of these results, 12 additional projects have been funded in Bolivia, Indonesia, Kenya, Mali, Peru and Romania. Conclusions: Relatively small investments, accompanied by external mentoring, can help build sustainable capacity for the diagnosis and care of children with cancer in selected institutions in developing countries. No significant financial relationships to disclose.

Identifying determinants of quality of life of children with cancer and childhood cancer survivors: a systematic review

2011 ◽  
Vol 19 (9) ◽  
pp. 1275-1287 ◽  
Author(s):  
Anne F. Klassen ◽  
Samantha J. Anthony ◽  
Aalia Khan ◽  
Lillian Sung ◽  
Robert Klaassen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Childhood Cancer Survivors ◽  
Children With Cancer

scholarly journals Presentation and Outcomes of Childhood Cancer Patients at Uganda Cancer Institute

2019 ◽  
Vol 6 ◽  
pp. 2333794X1984974 ◽  
Author(s):  
Innocent Mutyaba ◽  
Henry R. Wabinga ◽  
Jackson Orem ◽  
Corey Casper ◽  
Warren Phipps
Keyword(s):  
Childhood Cancer ◽  
Lymphoblastic Leukemia ◽  
Kaposi Sarcoma ◽  
Sub Saharan Africa ◽  
Children With Cancer ◽  
Non Hodgkin Lymphoma ◽  
Cox's Regression ◽  
Sub Saharan ◽  
Poor Outcomes ◽  
Histological Confirmation

Introduction. Limited data suggest that children with cancer in sub-Saharan Africa have poor survival. We aimed to describe the presentation, treatment outcomes, and factors associated with survival among children with cancer managed at Uganda Cancer Institute. Methods. We retrospectively evaluated patients with childhood cancer (age ≤19 years) from Kyadondo County treated at Uganda Cancer Institute from 2006 to 2009. Cox’s regression and Kaplan-Meier methods were used to study 1-year survival. Results. Among 310 patients studied, median age was 7 years (range = 0.25-19 years), 64% were boys, and 92% had histological confirmation of cancer diagnosis. The commonest diagnoses were Burkitt lymphoma (BL, N = 87), Kaposi sarcoma (KS, N = 68), non-BL non-Hodgkin lymphoma (NHL, N = 32), acute lymphoblastic leukemia (ALL, N = 28), Wilms (N = 28), and Hodgkin disease (HD, N = 20). Advanced disease at diagnosis was common for all cancers (ranging from 45% for KS to 83% for non-BL NHL). Overall, 33.2% abandoned treatment. One-year survival was 68% for HD (95% confidence interval [CI] = 11.3-40.6), 67% for KS (95% CI = 52.1-77.9), 55% for BL (95% CI = 42-66.9), 44% for Wilms (95% CI = 22.5-63), 43% for non-BL NHL (95% CI = 23.3-61.3), and 20% for ALL (95% CI = 6.4-38.7). In univariate and multivariate analysis, anemia and thrombocytopenia were associated with mortality for several cancers. Conclusion. Survival among children with cancer in Uganda is poor. Advanced stage disease and loss to follow-up likely contribute to poor outcomes. Anemia and thrombocytopenia may augment traditional staging methods to provide better prognostic factors in Uganda and warrant further evaluation.

scholarly journals Health system determinants of access to essential medicines for children with cancer in Ghana

2020 ◽  
Vol 5 (9) ◽  
pp. e002906
Author(s):  
Rhonda Boateng ◽  
Lorna Renner ◽  
Kadia Petricca ◽  
Sumit Gupta ◽  
Avram Denburg
Keyword(s):  
Health System ◽  
Childhood Cancer ◽  
Policy Development ◽  
Essential Medicines ◽  
Cancer Drug ◽  
Structured Interviews ◽  
Children With Cancer ◽  
Drug Access ◽  
Context Specific ◽  
The Impact

BackgroundEvidence of the context-specific challenges related to childhood cancer drug (CCD) access is vital to improving outcomes for children with cancer in low- and middle-income countries, such as Ghana. We sought to determine the availability and cost of essential CCD in Ghana and identify the underlying determinants of access.MethodsOur study integrated quantitative data on drug prices and availability with qualitative insights into health system and sociopolitical determinants of CCD access in Ghana. We analysed retrospective monthly price and stock data for 41 cancer and supportive care drugs on the WHO Essential Medicines List (EML) from private retail and public institutional pharmacies. Non-parametric analyses evaluated relationships between drug price and availability, and impacts of drug class and formulation on availability and procurement efficiency. We assessed the determinants of drug access through thematic analysis of policy documents and semi-structured interviews (n=21) with key health system stakeholders.ResultsGhana lists only 47% of essential CCD on its National EML, revealing gaps in domestic formulary inclusion. Stock-outs occurred for 88% of essential CCD, with a 70-day median stock-out duration; 32% had median price ratios above internationally-accepted efficiency thresholds. Drugs procured inefficiently were more susceptible to stock-outs (p=0.0003). Principal determinants of drug access included: (1) lack of sociopolitical priority afforded childhood cancer and (2) the impact of policy and regulatory environments on drug affordability, availability and quality. Establishment of a population-based cancer registry, a nationally-coordinated procurement strategy for CCD, public financing for childhood cancer care and policies to control drug costs emerged as priority interventions to improve drug access in Ghana.ConclusionOur study provides context-specific evidence to enable responsive policy development for efficient drug procurement and supply management in Ghana and establishes a rigorous approach to the analysis of childhood cancer drug access in similar health system settings.

Childhood cancer in Sudan: 1999–2007

2008 ◽  
Vol 38 (4) ◽  
pp. 208-210 ◽  
Author(s):  
Dafalla O Abuidris ◽  
Mohamed E Ahmed ◽  
Elgaili M Elgaili ◽  
Ramandeep S Arora
Keyword(s):  
Nuclear Medicine ◽  
Childhood Cancer ◽  
Burkitt’S Lymphoma ◽  
Burkitt's Lymphoma ◽  
Wilms Tumour ◽  
Children With Cancer ◽  
Paediatric Patients ◽  
Time Period ◽  
Hospital Registry ◽  
A Current

There is paucity of information on childhood cancer from Sudan with the last studies published more than 20 years ago. This study aims to provide a current picture of childhood cancer in Sudan. Data was obtained from the hospital registry for the period May 1999 to June 2007 on all paediatric patients presenting to the Institute of Nuclear Medicine and Oncology, University of Gezira, Wad Madani, Sudan. There were 322 children with cancer during this time period with a male:female ratio of 1.6:1. Lymphomas (111, 35%), leukaemia (83, 26%) and Wilms' tumour (43, 13%) were the three most common groups of tumours. Thirty percent of all lymphomas were Burkitt's lymphoma; 3.4% of all childhood cancer cases were nasopharyngeal carcinomas.

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