scholarly journals Importance of the National Childhood Cancer Registry in the field of paediatric oncology care

2014 ◽  
Vol 155 (19) ◽  
pp. 732-739 ◽  
Author(s):  
Miklós Garami ◽  
Dezső Schuler ◽  
Zsuzsanna Jakab
Keyword(s):  
Childhood Cancer ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Paediatric Oncology ◽  
Treatment Modalities ◽  
Cancer Registration ◽  
Childhood Cancers ◽  
Paediatric Cancer ◽  
Oncology Care

National Childhood Cancer Registry has been operated since 1971 by the Hungarian Paediatric Oncology Network. This Registry collects data on epidemiology, treatment modalities and effectiveness, as well as late follow-up of childhood cancers. An internet-based paediatric cancer registration and communication system for the Hungarian Paediatric Oncology Network has been introduced in April, 2010. The National Childhood Cancer Registry contains data of all paediatric cancer patients (0–18 yrs) who have insurance covered by the Hungarian Social Security Card. Creation (1971) and operation of the National Childhood Cancer Registry have been very important steps in the field of childhood oncology to evaluate the efficiency of paediatric oncology treatments as well as maximize return on medical investment. Orv. Hetil., 2014, 155(19), 732–739.

Late Complications of Cancer in Childhood and Adolescence

2013 ◽  
Vol 09 (01) ◽  
pp. 52 ◽  
Author(s):  
Tanzina Chowdhury ◽  
Gill A Levitt ◽  
◽  
Keyword(s):  
Childhood Cancer ◽  
Significant Proportion ◽  
Childhood Cancer Survivors ◽  
Late Complications ◽  
Childhood And Adolescence ◽  
Childhood Cancers ◽  
The Us ◽  
Mortality Ratio ◽  
Childhood Cancer Survivor Study

Overall survival for all childhood cancers has substantially increased with nearly 80 % of children surviving to five years following diagnosis, compared with 30 % 50 years ago. Unfortunately this comes at a cost; the overall Standardised Mortality Ratio (SMR) was 8.4 for childhood cancer survivors compared with the general population and increases in cause-specific mortality were seen for deaths due to second malignancy and cardiotoxicity. The incidence of chronic morbidities in the US Childhood Cancer Survivor Study (CCSS) cohort was 62.3 % after follow-up for 26.6 years. While many children will escape these organ toxicities, a significant proportion will require surveillance and management of treatment morbidities. It is the responsibility of those who treat childhood cancer to understand the effects of treatment and provide effective services to maximise the potential of these young people.

Using Canadian administrative data to evaluate primary and oncology care of breast cancer patients post-treatment: Subset of the CanIMPACT Study.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 5-5 ◽  
Author(s):  
Mary L McBride ◽  
Patti Groome ◽  
Donna Turner ◽  
Margaret Jorgensen ◽  
Cynthia Kendell ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Primary Care ◽  
Cancer Patients ◽  
Administrative Data ◽  
Cancer Care ◽  
Data Access ◽  
Post Treatment ◽  
Breast Cancer Patients ◽  
Oncology Care

5 Background: CanIMPACT is a multi-provincial Canadian research team funded to identify and address key issues faced by cancer patients and providers at the intersection of primary and specialist oncology care. Canada has national healthcare standards, but provincial/territorial healthcare delivery systems. One facet will use administrative data from the population-based, publicly-funded healthcare system to evaluate issues during pre-diagnosis, treatment, and post-treatment survivorship for breast cancer patients. For the survivorship phase, we aim to conduct the following analyses and compare across provinces: 1) Utilization of physician services overall and by specialty, including oncologists, non-oncology specialists, and primary care; 2) Assessment of adherence to ASCO and Canadian follow-up guideline for breast cancer care, use of surveillance breast imaging, and metastatic investigations; 3) Assessment of adherence to recommended care of chronic illness and preventive care; 4) Quantification of the cost of follow-up overall and by specialty; 5) Comparison of inter- and intra-provincial variation for all outcomes by health administrative region and for vulnerable groups (age ≥ 75 at diagnosis, northern/rural/remote, low income, immigrants), and examine the effect of continuity of primary care and chronic disease on post-treatment care. Methods: Patients will be identified from provincial cancer registries and linked to data extracted from: outpatient physician service claims, hospital inpatient and outpatient data, and cancer facility medical records. Results: Participating provinces have finalized the core questions and detailed protocols, and assessed data comparability. They are in the process of obtaining the required ethics and data access approvals, and data acquisition for processing and analysis. Conclusions: Results will address existing information gaps that can be used to improve transition and care across the cancer care trajectory. Importantly, results will be combined with those of a CanIMPACT qualitative study to inform design of a pragmatic randomized trial focused on improving coordination and quality of care.

Risk of cancer in first-degree relatives of childhood cancer patients: A linked longitudinal population-based registry study.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. 1522-1522
Author(s):  
Laura-Maria Madanat-Harjuoja ◽  
Janne Pitkäniemi ◽  
Elli Hirvonen ◽  
Nea Malila ◽  
Lisa Diller
Keyword(s):  
Childhood Cancer ◽  
Cancer Patients ◽  
Cancer Registry ◽  
Bone Tumor ◽  
Early Onset ◽  
Index Case ◽  
Population Based ◽  
Elevated Risk ◽  
Malignant Bone Tumor ◽  
Risk Of Cancer

1522 Background: Population based data on risk of cancer in relatives of childhood cancer patients are sparse. Using linked population-based registries, we set out to evaluate risk of early onset cancer in first-degree relatives of childhood cancer patients. Methods: We queried the Finnish Cancer Registry and ascertained a cohort of 9135 individuals diagnosed with at least one cancer under the age of 21 years between 1970 and 2012. We then went on to identify a total of 58,211 unique first- and second-degree relatives by linking to the Central Population Registry. Relatives were then linked back to the annually updated Finnish Cancer Registry to identify cancer diagnoses in siblings, offspring and parents of childhood cancer patients, restricting to cancers occurring under the age of 40. Risk of cancer in relatives of the index case was estimated using standardized incidence ratios (SIRs) comparing cancer age and period specific incidence in relatives to that of the general population. Results: A total of 288 cancers were diagnosed in relatives during the 900,907 years of follow-up, while 266 cancers were expected. The overall risk of cancer in siblings of childhood cancer patients was elevated (SIR 1.18 95% CI 1.00-1.39). 144 of the childhood cancer patients were identified as having a sibling additional to index case with a diagnosis of cancer at age < 40; 44 of these 144 also had a parent with early onset cancer. The risk of early onset cancer was elevated in offspring overall (SIR 1.79 95%CI 1.05-2.81) and in offspring of retinoblastoma, malignant bone tumor and neuroblastoma patients. Siblings of lymphoma patients were at elevated risk of early cancer, and the mothers of 11 of 27 sibling pairs (lymphoma + cancer < 40 yo) also had cancer at age < 40. Conclusions: Linked registries allow family history of cancer to be evaluated across multiple relatives and to be longitudinally updated. Results are generally reassuring with regard to risk of cancer in relatives of childhood cancer patients. Elevated risk in relatives of retinoblastoma and malignant bone tumor patients are in line with the known cancer syndromes associated with these tumor types, and lymphoma and neuroblastoma families need further analysis.

Risk of Cardiovascular Mortality in Prostate Cancer Patients in the Rotterdam Randomized Screening Trial

2006 ◽  
Vol 24 (25) ◽  
pp. 4184-4189 ◽  
Author(s):  
Suzie J. Otto ◽  
Fritz H. Schröder ◽  
Harry J. de Koning
Keyword(s):  
Prostate Cancer ◽  
General Population ◽  
Cancer Patients ◽  
Cardiovascular Mortality ◽  
Randomized Study ◽  
Primary Treatment ◽  
Treatment Modalities ◽  
Prostate Cancer Treatment ◽  
Standardized Mortality Ratios

Purpose To estimate the risk of cardiovascular disease (CVD) mortality in prostate cancer patients in the Rotterdam section of European Randomized Study of Screening for Prostate Cancer, in both arms, and to compare this with the risk in the general population. Methods Standardized mortality ratios (SMRs) of cardiovascular mortality for 2,211 prostate cancer patients were calculated including analyses for treatment subgroups (surgery, radiotherapy, watchful waiting, and hormone therapy). Cardiovascular mortality was defined as death as a result of all CVD and as a result of coronary heart disease, acute myocardial infarction, other diseases of the heart, and cerebrovascular accidents. The prevalence of self-reported comorbidities at entry of the trial was evaluated as well. Results After a mean follow-up of 5.5 years, 258 prostate cancer patients (12%) had died. The SMR of all-cause mortality was 0.90 (95% CI, 0.79 to 1.01). The risk for cardiovascular mortality was low compared with that in the general population; the SMRs varied between 0.37 and 0.49. Low cardiovascular mortality risks were also seen within each treatment subgroup. CVD was the most frequently self-reported comorbidity at entry and prostate cancer patients undergoing radical prostatectomy reported the lowest rates (24%) compared with those receiving other therapies (40% to 42%). Conclusion Although some self-selection has occurred, prostate cancer treatment did not increase the risk of dying as a result of cardiovascular causes in our cohort. The risk was significantly lower for all primary treatment modalities, suggesting that less emphasis should be put on CVD as a contraindication for aggressive (surgical) treatment for prostate cancer patients.

Using electronic medical record system to improve compliance with national guidelines for comprehensive distress screening in cancer patients.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 309-309
Author(s):  
Chintan Pandya ◽  
Sandra Sabatka ◽  
Michelle Kettinger ◽  
Alexander Alongi ◽  
Lauren M. Hamel ◽  
...  
Keyword(s):  
Social Work ◽  
Cancer Patients ◽  
Medical Record ◽  
Electronic Medical Record ◽  
Psychosocial Care ◽  
Structured Data ◽  
National Guidelines ◽  
Distress Screening ◽  
Oncology Care

309 Background: Psychosocial distress screening (DS) and management is associated with improved quality of life and outcomes in cancer patients and is required for accreditation by the American College of Surgeons Commission on Cancer. Comprehensive distress screening (CDS) consists of routine distress screening, evaluation, referral to appropriate psychosocial services, and follow-up to ensure adequate care. Electronic medical record (EMR) systems can be leveraged to facilitate and document CDS as part of clinical care and to evaluate the CDS process as a quality standard. The aim of this study is to develop and implement an EMR-based tool to document and evaluate the CDS process as part of routine oncology care. Methods: An EMR-based tool with structured data fields is developed for social workers to document risk factors for distress, assessment, management plan including psychosocial service referrals, and time spent delivering care following DS using the NCCN distress thermometer (DT). Evaluation of CDS process is done in cancer patients who have documented psychosocial care in the EMR-system from 1/2017-5/2018. Results: During the study period, 1327 cancer patients underwent 2480 distress screening evaluations. The average distress score was 3.2 (median = 2) on the DT scale of 0-10, with 855 (64%), 326 (25%), and 146 (11%) patients reporting on average mild (0-3), moderate (4-6), and severe (7-10) distress respectively. 400/1327 (30%) patients accounted for 1177 documented social work contact/visits, of which financial (40%) and emotional (15%) were the most common concerns. 89% (1047) of the visits had follow-up plans and 77% of encounters resulted in referrals, of which financial support (26%) and pharmacy assistance (22%) were the most common referral services. The average time spent on each psychosocial care visit was reported to be 21 minutes. Conclusions: EMR-based forms with structured data fields can be used to document and promote improved adherence to national guidelines for CDS as part of routine oncology care by facilitating data collection. Such tools can be leveraged to capture relevant data on impact of CDS on social work resource utilization.

Trends in treatment-related deaths (TRDs) in childhood cancer and leukemia over time: A follow-up of patients included in the childhood cancer registry of the Rhône-Alpes region in France (ARCERRA)

2008 ◽  
Vol 50 (6) ◽  
pp. 1213-1220 ◽  
Author(s):  
Fernand Freycon ◽  
Béatrice Trombert-Paviot ◽  
Léonie Casagranda ◽  
Yves Bertrand ◽  
Dominique Plantaz ◽  
...  
Keyword(s):  
Childhood Cancer ◽  
Cancer Registry ◽  
Over Time

scholarly journals Indicators of Data Quality at the Cancer Registry Zurich and Zug in Switzerland

2018 ◽  
Vol 2018 ◽  
pp. 1-11 ◽  
Author(s):  
Miriam Wanner ◽  
Katarina L. Matthes ◽  
Dimitri Korol ◽  
Silvia Dehler ◽  
Sabine Rohrmann
Keyword(s):  
Data Quality ◽  
Childhood Cancer ◽  
Cancer Registry ◽  
Incidence Rates ◽  
Cancer Registration ◽  
Reference Ranges ◽  
Comprehensive Overview ◽  
Non Melanoma Skin Cancer ◽  
The Stability ◽  
Over Time

Data quality is an important issue in cancer registration. This paper provides a comprehensive overview of the four main data quality indicators (comparability, validity, timeliness, and completeness) for the Cancer Registry Zurich and Zug (Switzerland). We extracted all malignant cancer cases (excluding non-melanoma skin cancer) diagnosed between 1980 and 2014 in the canton of Zurich. Methods included the proportion of morphologically verified cases (MV%), the proportion of DCN and DCO cases (2009–2014), cases with primary site uncertain (PSU%), the stability of incidence rates over time, age-specific incidence rates for childhood cancer, and mortality:incidence (MI) ratios. The DCO rate decreased from 6.4% in 1997 to 0.8% in 2014 and was <5% since 2000. MV% was 95.5% in 2014. PSU% was <3% over the whole period. The incidence rate of all tumours increased over time with site-specific fluctuations. The overall M:I ratio decreased from 0.58 in 1980 to 0.37 in 2014. Overall, data quality of the Cancer Registry Zurich and Zug was acceptable according to the methods presented in this review. Most indicators improved over time with low DCO rates, high MV%, low PSU%, relatively low M:I ratios and age-specific incidence of childhood cancer within reference ranges.

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