Results of a pre-implementation analysis of Ethiopia’s National Pediatric Cancer Registry

2020 ◽  
pp. 107815522098005
Author(s):  
Kaitlyn M Buhlinger ◽  
Jared Borlagdan ◽  
Bemnat Agegnehu ◽  
Atalay M Fentie ◽  
Adam T Bernstein ◽  
...  

In Ethiopia, cancer accounts for about 5.8% of total national mortality, with an estimated annual incidence of cancer of approximately 60,960 cases and an annual mortality of over 44,000 persons. This is likely an underestimation. Survival rates for pediatric malignancies are likewise suboptimal although exact figures are unknown since a national cancer registry is unavailable. The World Health Organization (WHO) provides recommendations for the creation of cancer registries to track such data. Here we describe our pharmacist-led, pre-implementation assessment of introducing an enhanced national pediatric cancer registry in Ethiopia. Our assessment project had three specific aims around which the methods were designed: 1) characterization of the current spreadsheet-based tool across participating sites, including which variables were being collected, how these variables compared to standards set by the WHO, and a description of how the data were entered and its completeness; 2) assessment of the perceptions of an enhanced registry from hospital staff; and 3) evaluation of workflow gaps regarding documentation. The hospital staff and leadership have generally positive perceptions of an enhanced pediatric cancer registry, which were further improved by our interactions. The workflow assessment revealed several gaps, which were addressed systematically using a three-phase implementation science approach. The assessment also demonstrated that the existing spreadsheet-based tool was missing WHO-recommended variables and had inconsistent completion due to the workflow gaps. A pediatric oncology summary sheet will be implemented in upcoming trips in patient charts to better summarize the patients’ journey starting from diagnosis. This document will be used by the data clerks in an enhanced-spreadsheet to have a more complete data set.

2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e21510-e21510
Author(s):  
M. Tezer Kutluk ◽  
Akif Yeşilipek

e21510 Background: In Children and adolescents aged 0-14, each year more than 200.000 new cancer cases are expected at global level. For the planning and implementation of an effective pediatric cancer control program, pediatric cancer registries are essential. The long term survival rates have been improved to 85% in high income countries, however it is still less than this in LMICs. This work presents the most updated results of the pediatric cancer registry in Turkey. Methods: Turkish Pediatric Oncology Group and Turkish Pediatric Hematology Association has established the Pediatric Cancer Registry in 2002. The childhood cancer cases registered between 2009-2018 was included in this analysis. International Childhood Cancer Classification System was used for the classification. Essential demographic findings, ICD-O-3 morphology and topography codes were recorded for each case. Results: During the 10 years from 2009 to 2018, 15713 cases were registered. For all cases, median age was 6.7 year (0-17; M/F 8838/6867, 3 hermaphrodite, 5 unknown). Age distribution was 0-4 yrs, 40.7%; 5-9 yrs, 24.4%; 10-14 yrs, 23.2%; 15-19 yrs, 11.7%) The distribution of the tumor types were [number of cases, percentage of total, median age yrs, M/F]: Leukemia (4368, 27.8%, 5.4, 2519/1849); Lymphoma & other RES tumors (2996, 19.1%, 9.7, 2012/979, 1 hermaphrodite & 4 unknown); CNS [brain & spinal] (2089, 13.3%, 7.1, 1142/947); Symphatetic system (1243, 7.9%, 2.4, 650/593); Retinoblastoma (358, 2.3%, 1.4, 204/154); Renal (788, 5.0%, 3.3, 369/419); Liver (260, 1.7%, 1.8, 143/117); Malignant bone (1030, 6.6%, 12.6, 566/464); Soft tissue sarcomas (1052, 6.7%, 7.4, 611/441); Germ cell (971, 6.2%, 8.4, 346/622, 2 hermaphrodite, 1 unknown); Carcinoma & other malignant epithelial (462, 2.9%, 13.7, 226/236); Other/non-specific malignant (96, 0.5%, 7.8, 50/46). Five year survival rate was found as 70.8%. Conclusions: This registry has been used widely among health care professionals since its establishment in 2002. Survival rates for children and adolescents has been improved to 70%. This level of survival is at the acceptable level for an upper middle income country. This registry became a useful source for investigator and decision makers at national and international level.


Author(s):  
Pramila Arulanthu ◽  
Eswaran Perumal

: The medical data has an enormous quantity of information. This data set requires effective classification for accurate prediction. Predicting medical issues is an extremely difficult task in which Chronic Kidney Disease (CKD) is one of the major unpredictable diseases in medical field. Perhaps certain medical experts do not have identical awareness and skill to solve the issues of their patients. Most of the medical experts may have underprivileged results on disease diagnosis of their patients. Sometimes patients may lose their life in nature. As per the Global Burden of Disease (GBD-2015) study, death by CKD was ranked 17th place and GBD-2010 report 27th among the causes of death globally. Death by CKD is constituted 2·9% of all death between the year 2010 and 2013 among people from 15 to 69 age. As per World Health Organization (WHO-2005) report, 58 million people expired by CKD. Hence, this article presents the state of art review on Chronic Kidney Disease (CKD) classification and prediction. Normally, advanced data mining techniques, fuzzy and machine learning algorithms are used to classify medical data and disease diagnosis. This study reviews and summarizes many classification techniques and disease diagnosis methods presented earlier. The main intention of this review is to point out and address some of the issues and complications of the existing methods. It is also attempts to discuss the limitations and accuracy level of the existing CKD classification and disease diagnosis methods.


Author(s):  
Praveen Indraratna ◽  
Uzzal Biswas ◽  
Jennifer Yu ◽  
Guenter Schreier ◽  
Sze-Yuan Ooi ◽  
...  

Introduction: Mobile phone-based interventions in cardiovascular disease are growing in popularity. A randomised control trial (RCT) for a novel smartphone app-based model of care, named TeleClinical Care - Cardiac (TCC-Cardiac), commenced in February 2019, targeted at patients being discharged after care for an acute coronary syndrome or episode of decompensated heart failure. The app was paired to a digital sphygmomanometer, weighing scale and a wearable fitness band, all loaned to the patient, and allowed clinicians to respond to abnormal readings. The onset of the COVID-19 pandemic necessitated several modifications to the trial in order to protect participants from potential exposure to infection. The use of TCC-Cardiac during the pandemic inspired the development of a similar model of care (TCC-COVID), targeted at patients being managed at home with a diagnosis of COVID-19. Methods: Recruitment for the TCC-Cardiac trial was terminated shortly after the World Health Organization announced COVID-19 as a global pandemic. Telephone follow-up was commenced, in order to protect patients from unnecessary exposure to hospital staff and patients. Equipment was returned or collected by a ‘no-contact’ method. The TCC-COVID app and model of care had similar functionality to the original TCC-Cardiac app. Participants were enrolled exclusively by remote methods. Oxygen saturation and pulse rate were measured by a pulse oximeter, and symptomatology measured by questionnaire. Measurement results were manually entered into the app and transmitted to an online server for medical staff to review. Results: A total of 164 patients were involved in the TCC-Cardiac trial, with 102 patients involved after the onset of the pandemic. There were no hospitalisations due to COVID-19 in this cohort. The study was successfully completed, with only three participants lost to follow-up. During the pandemic, 5 of 49 (10%) of patients in the intervention arm were readmitted compared to 12 of 53 (23%) in the control arm. Also, in this period, 28 of 29 (97%) of all clinically significant alerts received by the monitoring team were managed successfully in the outpatient setting, avoiding hospitalisation. Patients found the user experience largely positive, with the average rating for the app being 4.56 out of 5. 26 patients have currently been enrolled for TCC-COVID. Recruitment is ongoing. All patients have been safely and effectively monitored, with no major adverse clinical events or technical malfunctions. Patient satisfaction has been high. Conclusion: The TCC-Cardiac RCT was successfully completed despite the challenges posed by COVID-19. Use of the app had an added benefit during the pandemic as participants could be monitored safely from home. The model of care inspired the development of an app with similar functionality designed for use with patients diagnosed with COVID-19.


2021 ◽  
Author(s):  
◽  
Zayra Ramírez Gaytán

Diabetes is one of the fastest-growing, life-threatening, chronic degenerative diseases. According to the World Health Organization (WHO), it has affected 422 million people worldwide in 2018. Approximately 50% of all people who suffer diabetes are not diagnosed due to the asymptomatic phase which usually lasts a long time. In this work, a data set of 520 instances has been used. The data set has been analyzed with the next three algorithms: logistic regression algorithm, decision trees and random forest. The results show that the decision tree algorithm had better performance with an AUC of 98%. Also, it was found the most common symptoms that a person with a risk of diabetes presents are polyuria, polydipsia and sudden weight loss.


Author(s):  
Shaun Purkiss ◽  
Tessa Keegel ◽  
Hassan Vally ◽  
Dennis Wollersheim

BackgroundQuantifying the mortality risk for people with diabetes is challenging because of associated comorbidities. The recording of cause specific mortality from accompanying cardiovascular disease in death certificate notifications has been considered to underestimate the overall mortality risk in persons with diabetes. Main AimDevelop a technique to quantify mortality risk from pharmaceutical administrative data and apply it to persons diagnosed with diabetes, and associated cardiovascular disease and dyslipidaemia before death. MethodsPersons with diabetes, cardiovascular disease and dyslipidaemia were identified in a publicly available Australian Pharmaceutical data set using World Health Organization anatomic therapeutic codes assigned to medications received. Diabetes associated multi-morbidity cohorts were constructed and a proxy mortality (PM) event determined from medication and service discontinuation. Estimates of mortality rates were calculated from 2004 for 10 years and compared persons with diabetes alone and associated cardiovascular disease and dyslipidemia. ResultsThis study identified 346,201 individuals within the 2004 calendar year as having received treatments for diabetes (n=51,422), dyslipidaemia (n=169,323) and cardiovascular disease including hypertension (n=280,105). Follow up was 3.3 x 106 person-years. Overall crude PM was 26.1 per 1000 person-years. PM rates were highest in persons with cardiovascular disease and diabetes in combination (47.5 per 100 person years). Statin treatments significantly improved the mortality rates in all persons with diabetes and cardiovascular disease alone and in combination over age groups >44 years (p<.001). Age specific diabetes PM rates using pharmaceutical data correlated well with Australian data from the National Diabetes Service Scheme (r=0.82) ConclusionProxy mortality events calculated from medication discontinuation in persons with chronic conditions can provide an alternative method to estimate disease mortality rates. The technique also allows the assessment of mortality risk in persons with chronic disease multi-morbidity.


2019 ◽  
Vol 59 (4) ◽  
pp. 188-94
Author(s):  
Sri Mulatsih ◽  
Adnina Hariningrum ◽  
Ignatius Purwanto ◽  
Rizki Oktasari

Background A hospital-based cancer registry can be used as a guide to decision-making. Considering the limited cancer registry data in the population, the Yogyakarta Pediatric Cancer Registry (YPCR) is one of the pioneers of hospital-based pediatric cancer registries in Indonesia. The YPCR was started in 2000 in Dr. Sardjito Hospital. Objective To describe the characteristics of childhood cancer and the outcomes by analyzing overall survival (OS) and event-free survival (EFS) based on data from Yogyakarta Pediatric Cancer Registry. Methods Data were collected from the YPCR for the period of 2000 to 2016. Childhood cancers were classified into 12 groups based on the 3rd edition International Classification for Childhood Cancer (ICCC). Incidence, frequency, and distribution of cases were grouped by sex, age, and patients’ place of residence. Incidence was further analyzed using SPSS software. Kaplan-Meier test was used to analyze OS and EFS. Results Within the study period, 2,441 children aged 0-18 years were diagnosed with cancer. The highest incidence was found in the 1-5-year age group. The most common diagnoses found were leukemia, myeloproliferative disorders, and myelodysplastic disease (58%); lymphoma and reticuloendothelial neoplasm (8%); retinoblastoma (6%); soft tissue and other extra-osseous sarcomas (5%); as well as neuroblastoma and other peripheral nervous cell tumors (5%). The OSs of acute lymphoblastic leukemia (ALL), high risk ALL (HR-ALL), and standard risk (SR-ALL) were 31.8%, 18.5%, and 43.9%, respectively. The EFSs of ALL, HR-ALL, and SR-ALL were 23.9%, 14.7%, and 32.4%, respectively. For solid tumors, the OS was 13.7% and EFS was 6.4%. Conclusion The number of new cases of childhood cancer has increased in the last few years. The Yogyakarta Pediatric Cancer Registry (YPCR), which serves as a hospital-based pediatric cancer registry, has an important role to evaluate clinical and non-clinical aspects of childhood cancer.


2019 ◽  
Vol 152 (Supplement_1) ◽  
pp. S82-S82
Author(s):  
Emilia Calvaresi ◽  
Jonathan Genzen

Abstract Objectives The World Health Organization recommends measurement of G6PD activity prior to initiation of 8-aminoquinolones for the treatment of P vivax malaria. An estimated 400 million people worldwide have G6PD deficiency, making them susceptible to hemolysis under oxidative stress. A new single-dose therapy (radical cure) for malaria with tafenoquine is contraindicated in patients with <70% normal G6PD activity due to its prolonged circulating half-life. However, most clinical laboratories report G6PD activity in units g/Hb or units/1012 RBC and do not provide percentage of normal activity, making potential eligibility determination challenging. Methods Using an IRB-exempt protocol, a limited data set of consecutive G6PD quantitative results was retrieved from the clinical laboratory’s enterprise data warehouse. Laboratory testing of these specimens was previously performed at 37°C using an automated enzymatic assay (Pointe Scientific) configured on a cobas c501 chemistry analyzer (Roche Diagnostics). Data were assembled to include adults age 18 to 89 years and excluded repeat results from the same patients as well as outliers. Conclusion The final data set included 52,216 results (female, 55.9%, n = 29,173; male, 44.1%, n = 23,043) from 47 US states. An adjusted male median (100% G6PD activity) was derived using an approach proposed by the Bangkok Workshop guidelines (Domingo et al., Malaria Journal, 2013), modified to more accurately differentiate bimodal peaks in population G6PD histograms. The laboratory-specific, adjusted male median was 12.7 U g/Hb and was similar to peak values derived from alternative curve-fitting approaches. Applying this median to gender-specific data sets, 5.4% of males and 3.8% of females were found to have <70% of normal activity (<8.9 U g/Hb). This study demonstrates the feasibility of percentage-based G6PD result reporting in adults; further studies will query percentage-based reporting in pediatric populations. Population-based medians will vary based on G6PD assay type and temperature and should be established by laboratories prior to percentage-based reporting.


Blood ◽  
2020 ◽  
Vol 136 (2) ◽  
pp. 157-170 ◽  
Author(s):  
Luca Malcovati ◽  
Kristen Stevenson ◽  
Elli Papaemmanuil ◽  
Donna Neuberg ◽  
Rafael Bejar ◽  
...  

Abstract The 2016 revision of the World Health Organization classification of tumors of hematopoietic and lymphoid tissues is characterized by a closer integration of morphology and molecular genetics. Notwithstanding, the myelodysplastic syndrome (MDS) with isolated del(5q) remains so far the only MDS subtype defined by a genetic abnormality. Approximately half of MDS patients carry somatic mutations in spliceosome genes, with SF3B1 being the most commonly mutated one. SF3B1 mutation identifies a condition characterized by ring sideroblasts (RS), ineffective erythropoiesis, and indolent clinical course. A large body of evidence supports recognition of SF3B1-mutant MDS as a distinct nosologic entity. To further validate this notion, we interrogated the data set of the International Working Group for the Prognosis of MDS (IWG-PM). Based on the findings of our analyses, we propose the following diagnostic criteria for SF3B1-mutant MDS: (1) cytopenia as defined by standard hematologic values, (2) somatic SF3B1 mutation, (3) morphologic dysplasia (with or without RS), and (4) bone marrow blasts &lt;5% and peripheral blood blasts &lt;1%. Selected concomitant genetic lesions represent exclusion criteria for the proposed entity. In patients with clonal cytopenia of undetermined significance, SF3B1 mutation is almost invariably associated with subsequent development of overt MDS with RS, suggesting that this genetic lesion might provide presumptive evidence of MDS in the setting of persistent unexplained cytopenia. Diagnosis of SF3B1-mutant MDS has considerable clinical implications in terms of risk stratification and therapeutic decision making. In fact, this condition has a relatively good prognosis and may respond to luspatercept with abolishment of the transfusion requirement.


2005 ◽  
Vol 132 (2) ◽  
pp. 303-308 ◽  
Author(s):  
Jivianne T. Lee ◽  
Clifford Y. Ko

OBJECTIVE: To analyze the epidemiologic patterns and survival rates for patients with nasopharyngeal carcinoma over the last three decades. METHODS: The National Cancer Institute (NCI) Surveillance, Epidemiology, and End Results (SEER) program tumor registries were used to identify patients with nasopharyngeal carcinoma in the United States from 1973 to 1999. Incidence and survival rates for each decade were then determined according to age, gender, race, histological type, and stage using the SEER statistical program. RESULTS: From 1973 to 1999, 4680 cases of patients with nasopharyngeal carcinoma in the United States were sampled by the NCI/SEER database. Overall incidence rates for each decade essentially remained unchanged over time (0.7/100,000). Asians exhibited the highest incidence rates (3.0–4.2), followed by blacks (0.7–1.1) and then whites (0.4–0.7). In contrast, survival rates have gradually improved over time for all stages and histological types (35.7% 5-year survival in the 1970s vs. 44.1% in the 1980, and 51% in the 1990s). With respect to race, Asians demonstrated the best 5-year survival rate (62.9%) followed by whites (42.6%) and then blacks (36.2%). However, this may be due to histology, because Asians were also found to have a greater proportion of World Health Organization (WHO) type III cases (27.6%) in comparison to the other 2 groups (22.4% for blacks and 15% for whites). CONCLUSIONS: Although the incidence rates of nasopharyngeal carcinoma have remained essentially unchanged in the United States in the last 3 decades, survival rates for each stage and histological subtype have exhibited considerable improvement over time. The higher survival rates in Asians may be partially attributed to the more favorable histology (type III) often seen in this group. EBM rating: B-3.


Blood ◽  
2011 ◽  
Vol 118 (21) ◽  
pp. 2226-2226
Author(s):  
Zaina Parvez Qureshi ◽  
John Armstrong ◽  
Charles Bennett

Abstract Abstract 2226 Objective: Thrombotic thrombocytopenic purpura (TTP) is a rare syndrome, with our group having identified the thienopyridines ticlopidine and clopidogrel as the most common drugs associated with TTP in Food and Drug Administration (FDA) databases. We review clinical, epidemiologic, laboratory, and drug safety findings for thienopyridine-associated TTP, including the first reported cases with prasugrel, a thienopyridine approved in 2009. Methods: Data sources included FDA's Adverse Event Reports database, pharmaceutical manufacturers, package inserts, physician surveys, phase III reports, insurance databases, and an epidemiologic study (1989–2011). Causality was assessed with the World Health Organization scale. Results: Since 2002, FDA received reports of 10 ticlopidine-, 140 clopidogrel-, and nine prasugrel-associated TTP cases, including four, 11, and 9 cases respectively, in the first year of marketing of each agent. Surveys of hematologists by our group identified 32 ticlopidine- and ten clopidogrel-associated TTP cases. Thienopyridines were administered for > two weeks for 90% of 93 ticlopidine-associated cases, 26% of 35 cases clopidogrel-associated cases, and none of nine prasugrel-associated cases. In the Phase III setting, one of 2,932 ticlopidine-, none of 27,961 clopidogrel-, and none of 1,769 prasugrel-treated patients developed TTP. Insurance databases identified three clopidogrel-associated TTP case among 15.3 million individuals. Ticlopidine- (n=30) versus clopidogrel-associated TTP patients (n=8) presented with severe ADAMTS13-deficiency (80% versus 0%) and neutralizing auto-antibodies to ADAMTS13 (100% versus 0%) and had higher survival rates following therapeutic plasma exchange (87% versus 50%) (p<0.05). Greater than 95% of ticlopidine-associated TTP cases were assessed as having a probable causal relationship versus none of the clopidogrel- or prasugrel-associated TTP cases. TTP is described in a Black Box warning for ticlopidine (1998, incidence of 1 in 2,000) and as a warning for clopidogrel (2000; 12 per million) and prasugrel (2010; no incidence reported) Conclusion: TTP is associated with all thienopyridines, although causal relationships remain under active investigations. Disclosures: Armstrong: LeadHorse Technologies Inc.: Employment.


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