Visualization Criteria: supporting knowledge transfer in Incident

Incident Management Systems (IMS) assist in managing resources in order to minimize fatalities and damage. Visual artifacts in an IMS can facilitate knowledge transfer between responders to an incident, however, evidence-based guidance on the design of these visualizations are lacking. The aim of this study is to propose evidence-based knowledge visualization criteria (KVC). Design Science Research (DSR) was the guiding methodology. We abstracted a set of KVC from the academic literature, and then applied said criteria to evaluate a cloud-based prototype IMS. The evaluation included interviews with content experts from the South African Fire Service to establish the relevance of the KVC. The KVC were also used in a heuristic evaluation of the IMS by usability experts. The theoretical contribution of the study is the validated set of KVC based on the triangulation of the findings from the content experts and the usability experts. The study also makes a practical contribution by demonstrating the use of evidencebased visualization criteria in IMS.School of Computin

Assessment of nutritional status in children with cancer : a narrative review

A child's appropriate development stems in large part from proper nutrition. Malnutrition is an adverse prognostic factor in children with cancer, and its prevalence is highly variable. Currently, there is no standardized definition and assessment method of nutritional status in pediatric oncology. A complete nutritional assessment includes anthropometry, biochemical, clinical, and dietary assessments. In this article, we explore these methods and suggest practical approaches for pediatric cancer units depending on the levels of care that these can provide. We also advise on the monitoring and follow-up of children with cancer during and after treatment, and discuss potential areas for future research.http://wileyonlinelibrary.com/journal/pbchj2021Paediatrics and Child Healt

Neuroblastoma : can lessons from the past help to improve the future?

BACKGROUND : The outcome of patients with neuroblastoma in South Africa has always been very poor. We conducted a retrospective study in one state-funded paediatric oncology unit (POU), to describe the clinical course, evaluate prognostic factors and report outcomes of patients with neuroblastoma. METHODS : We analysed routine data from one POU, gathered between 1993 and 2018. Kaplan-Meier curves were used to illustrate 2-year survival rates and to evaluate possible prognostic factors. RESULTS : Data from 87 patients were included and analysed. The median age was 41 months. The majority of the patients presented with stage 4 disease (77%). The most common presenting symptoms were bone pain, loss of weight, and abdominal distention. Chemotherapy was administered to 74 patients, and only 5 patients (6%) received palliative chemotherapy as first-line treatment. Only 18 of the 87 patients had surgery (21%) and 13 of 87 had radiation (15%), while 10 patients received palliative radioactive iodine (131I-miBG) therapy. Patients with ferritin levels >120 ng/dL did not have a poorer outcome, and those with a raised lactate dehydrogenase (LDH) level displayed a shorter survival time but it was not statistically significant. The 2-year overall survival was 24% for the whole cohort and 16% for the stage 4 patients at diagnosis. CONCLUSION : Neuroblastoma is a disease with a dismal outcome in our POU, mostly as a result of late presentation. To improve prognosis the focus should be on recognising danger signs to ensure early diagnosis and referral. We recommend adding danger signs for childhood cancer to the Integrated Management of Childhood Illness (IMCI) strategy in an attempt to improve early recognition and diagnosis of childhood cancer.https://journals.co.za/journal/m.sajcham2024Paediatrics and Child HealthSDG-03:Good heatlh and well-bein

Retinoblastoma outcome at a single institution in South Africa

Introduction. Retinoblastoma (RB) is the most common eye cancer in children. Early detection is necessary for cure.Objective. To compare stage and outcome of children with RB treated at Kalafong Hospital, Pretoria, South Africa (SA), during two time periods (1993 - 2000 and 2001 - 2008, after outreach interventions in 2000 and introduction of compulsory community service for doctors in 1998).Methods. Data collected included demography (age, gender, date of birth), stage and treatment received. The main outcome measure was disease-free survival and the study end-point was 60 months after diagnosis.Results. There were 51 patients during the time period 1993 - 2000 (group 1) and 73 during 2001 - 2008 (group 2), with median ages of 32 and 26 months, respectively (marginally significantly younger in group 2; p=0.046). In group 1, the majority (57%) presented with advanced disease (stages III and IV), a decline in this proportion in group 2 (40%) indicating a downward but not significant trend (p=0.075). Bilateral disease was diagnosed in 22% of patients in group 1 and 33% in group 2. Overall survival was 33% and 43% for groups 1 and 2, respectively. Excluding absconding patients, event-free survival was 50% in group 1, improving to 68% in group 2 (not statistically significant; p=0.18). Fewer patients needed radiotherapy during the second period (statistically significant; p=0.04), probably because of less advanced disease.Conclusion. Poor outcome is probably a result of late diagnosis. It is important to implement a strategy that will ensure early diagnosis and optimal management of RB in SA

Reporting incidences of neuroblastoma in various resource settings

PURPOSE : The incidences of neuroblastoma (NB) differ significantly between various resource settings because of varying quality of cancer registries and underdiagnoses. This study aimed to evaluate current regional variations as reported by international cancer registries and the theoretical and reported differences in international NB incidences and to evaluate South Africa (SA) as a case for variable reporting. METHODS : A comprehensive literature review on registries reporting on NB was performed to construct incidence tables. The SEER Program incidence of 10.5/million children was used to calculate the expected number of NB cases for each country. Registry data of NB cases between 2000 and 2016 were requested from The South African National Cancer registry (SA-NCR) and the South African Children’s Tumour Registry (SACTR) for comparison and to perform a probabilistic linkage study. RESULTS : Internationally, incidences varied between –97.1% and +80% compared with the SEER program. SA under-reported NB cases by an estimated 74.2%. Between 2000 and 2016, the SA-NCR reported between 23 and 51 cases/year, whereas the SACTR reported between 18 and 57 cases/year for the same period. The incidence reported by the SA-NCR varied between 1.5 and 2.8/million children under 15-year per year, whereas the SACTR reported 1.74-2.6 cases/million children. Both registries reported incidences less than high-income country. A probabilistic record linkage of the two registries resulted in a combined incidence of 2.9 cases/million children. CONCLUSION : As with most low- and middle-income countries, SA has either a lower incidence or underdiagnoses of NB cases. The reasons for under-reporting are not clear, but can be due to undiagnosed NB cases with spontaneous regression, missed possible cases because of lack of autopsies, and diagnosed cases not recorded in registries.http://ascopubs.org/journal/goam2022Paediatrics and Child Healt

Retinoblastoma outcome at a single institution in South Africa

INTRODUCTION : Retinoblastoma (RB) is the most common eye cancer in children. Early detection is necessary for cure. OBJECTVE : To compare stage and outcome of children with RB treated at Kalafong Hospital, Pretoria, South Africa (SA), during two time periods (1993 - 2000 and 2001 - 2008, after outreach interventions in 2000 and introduction of compulsory community service for doctors in 1998). METHODS : Data collected included demography (age, gender, date of birth), stage and treatment received. The main outcome measure was disease-free survival and the study end-point was 60 months after diagnosis. RESULTS : There were 51 patients during the time period 1993 - 2000 (group 1) and 73 during 2001 - 2008 (group 2), with median ages of 32 and 26 months, respectively (marginally significantly younger in group 2; p=0.046). In group 1, the majority (57%) presented with advanced disease (stages III and IV), with a decline in this proportion in group 2 (40%) indicating a downward but not significant trend (p=0.075). Bilateral disease was diagnosed in 22% of patients in group 1 and 33% in group 2. Overall survival was 33% and 43% for groups 1 and 2, respectively. Excluding absconding patients, event-free survival was 50% in group 1, improving to 68% in group 2 (not statistically significant; p=0.18). Fewer patients needed radiotherapy during the second period (statistically significant; p=0.04), probably because of less advanced disease. CONCLUSION : Poor outcome is probably a result of late diagnosis. It is important to implement a strategy that will ensure early diagnosis and optimal management of RB in SA.http://www.samj.org.zahb201

Global retinoblastoma presentation and analysis by national income level

IMPORTANCE : Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child’s life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. OBJECTIVES : To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. DESIGN, SETTING, AND PARTICIPANTS : A total of 278 retinoblastoma treatment centerswere recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. MAIN OUTCOMES AND MEASURES : Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. RESULTS : The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle–income countries and HICs, 17.92 [95%CI, 12.94-24.80], and for lower-middle–income countries vs upper-middle–income countries and HICs, 5.74 [95%CI, 4.30-7.68]). CONCLUSIONS AND RELEVANCE : This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs.The Queen Elizabeth Diamond Jubilee Trusthttp://oncology.jamanetwork.com/public/About.aspxam2021Paediatrics and Child Healt

Prevalence of poverty and hunger at cancer diagnosis and its association with malnutrition and overall survival in South Africa

DATA AVAILABILITY STATEMENT : The data that support the findings of this study are available on request from the corresponding author, JS. The data are not publicly available due to data containing information that could compromise the privacy of research participants.Many South African children live in poverty and food insecurity; therefore, malnutrition within the context of childhood cancer should be examined. Parents/caregivers completed the Poverty-Assessment Tool (divided into poverty risk groups) and the Household Hunger Scale questionnaire in five pediatric oncology units. Height, weight, and mid-upper arm circumference assessments classified malnutrition. Regression analysis evaluated the association of poverty and food insecurity with nutritional status, abandonment of treatment, and one-year overall survival (OS). Nearly a third (27.8%) of 320 patients had a high poverty risk, associated significantly with stunting (p = 0.009), food insecurity (p < 0.001) and residential province (p < 0.001) (multinomial regression). Stunting was independently and significantly associated with one-year OS on univariate analysis. The hunger scale was significant predictor of OS, as patients living with hunger at home had an increased odds ratio for treatment abandonment (OR 4.5; 95% CI 1.0; 19.4; p = 0.045) and hazard for death (HR 3.2; 95% CI 1.02, 9.9; p = 0.046) compared to those with food security. Evaluating sociodemographic factors such as poverty and food insecurity at diagnosis is essential among South African children to identify at-risk children and implement adequate nutritional support during cancer treatment.https://www.tandfonline.com/loi/hnuc202024-05-25hj2024Paediatrics and Child HealthSDG-02:Zero HungerSDG-03:Good heatlh and well-bein

Global Retinoblastoma Presentation and Analysis by National Income Level.

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68]). Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs

Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

BACKGROUND: The travel distance from home to a treatment centre, which may impact the stage at diagnosis, has not been investigated for retinoblastoma, the most common childhood eye cancer. We aimed to investigate the travel burden and its impact on clinical presentation in a large sample of patients with retinoblastoma from Africa and Europe. METHODS: A cross-sectional analysis including 518 treatment-naïve patients with retinoblastoma residing in 40 European countries and 1024 treatment-naïve patients with retinoblastoma residing in 43 African countries. RESULTS: Capture rate was 42.2% of expected patients from Africa and 108.8% from Europe. African patients were older (95% CI -12.4 to -5.4, p<0.001), had fewer cases of familial retinoblastoma (95% CI 2.0 to 5.3, p<0.001) and presented with more advanced disease (95% CI 6.0 to 9.8, p<0.001); 43.4% and 15.4% of Africans had extraocular retinoblastoma and distant metastasis at the time of diagnosis, respectively, compared to 2.9% and 1.0% of the Europeans. To reach a retinoblastoma centre, European patients travelled 421.8 km compared to Africans who travelled 185.7 km (p<0.001). On regression analysis, lower-national income level, African residence and older age (p<0.001), but not travel distance (p=0.19), were risk factors for advanced disease. CONCLUSIONS: Fewer than half the expected number of patients with retinoblastoma presented to African referral centres in 2017, suggesting poor awareness or other barriers to access. Despite the relatively shorter distance travelled by African patients, they presented with later-stage disease. Health education about retinoblastoma is needed for carers and health workers in Africa in order to increase capture rate and promote early referral