Context:Life-saving cancer therapy is costly and may result in financial burden for these families. Financial costs for treating childhood cancer care are traditionally assessed based on the amount spent for diagnostic tests, hospitalization, and chemotherapy. The financial costs for travel, accommodation, out-of-pocket expenses for food, phone bills, and loss of income due to reduction or termination of parental employment are hidden nonmedical expenses that are rarely accounted for. Studies on the financial implications of pediatric cancer treatment are based on the Western model of healthcare with good government/state insurance coverage and hence literature on lifestyle implications for families in developing nations with limited resources is still scarce.Aims:The aim of this study is to find out the details of out-of-pocket expenses incurred by the families during their treatment of cancer children and its implications on their quality of life. Settings and Design: This study was conducted in a tertiary care center for pediatric malignancies for over 1-year period.Subjects and Methods:About seventy families whose children were diagnosed with acute leukemia and undergoing treatment at our center were asked to fill a questionnaire detailing their out-of-pocket expenses.Results:Nonmedical expenses accounts for about 46% of their monthly household income of parents from rural areas and 22% of their household income from urban areas. On an average, a family from rural area spends four times the normal amount spent on home for their daily food expenditure. Thirty-eight percent of families have borrowed money from money lenders with an average interest rate of about 12.5% which pushes them to a state of debt for the next few years.Conclusions:Out-of-pocket expenses contribute a significant proportion to the financial burden of the families with childhood malignancies and these invisible expenses should be recognized and provide adequate support to lessen the burden of this economic impact.
Context:Tumors of the central nervous system (CNS) constitute the second most common pediatric cancers. Unlike leukemia, management of CNS tumors requires a good multidisciplinary team. Higher rates of treatment abandonment are documented in view of complexity of the treatment with long duration, involving neurosurgery, radiation, chemotherapy, and high cost of treatment. Morbidity associated with CNS tumors may be significant in terms of physical deficits as well as neuropsychological and neuroendocrine sequelae. Pediatric neurooncology is still at a very nascent stage in the developing countries. There are only a few reports on the multidisciplinary approach and outcomes of pediatric brain tumors in developing countries.Aims:The aim of this study is to identify the clinicopathological profile of Pediatric CNS tumors in a tertiary care center located in South India in comparison with reports from other low-and middle-income Countries.Settings and Design:A retrospective analysis of medical records of all children diagnosed with brain tumors from January 2012 to November 2016 at our institute was done.Subjects and Methods:A retrospective study of clinical, pathological profile, and outcomes of children <18 years diagnosed with brain tumors at our institute from January 2012 to November 2016 was done. Histopathological categorization was done as per the WHO classification 2007. The multidisciplinary treatment with respect to surgery, radiation, and chemotherapy was noted and the outcomes were recorded.Statistical Analysis Used:R for Statistical Computing (Version 3.0.2; 2013-09-25).Results:A total of 52 children were diagnosed with male preponderance of 66.6%. Highest incidence was noted in the age group of 0–4 years (50%). Majority of them were supratentorial (59.6%). CNS embryonal tumors contributed to 48% of all our brain tumors. 73% of them underwent either resection or biopsy. Eight (15.3%) of them died due to the progression of disease, but 44% abandoned treatment due to the progression/recurrence of disease. Those lost to follow-up were mostly among the high-risk groups with poor prognosis such as pontine glioma, medulloblastoma (high risk), and primitive neuroectodermal tumor.Conclusions:Although brain tumors constituted 30% of all our solid tumors, only 56% of them received appropriate treatment and 25% abandoned treatment. High rates of abandonment were a consequence of late diagnosis, complex multidisciplinary treatment involved, high treatment cost, lack of uniformity in management between different oncology centers and poor prognosis of the tumor subtype.
Context:Parents report that end-of-life decisions are the most difficult treatment-related decisions that they face during their child cancer experience. Research from the parent's perspective of the quality of end-of-life care of their cancer children is scarce, particularly in developing countries like India.Aims:This study aimed to identify the symptoms (medical/social/emotional) that most concerned parents at the end-of-life care of their cancer child and to identify the strategies parents found to be helpful during this period.Settings and Design:We wanted to conduct this to focus on the parents perspectives on their cancer child's end-of-life care and to address the issues that could contribute to the comfort of the families witnessing their child's suffering.Materials and Methods:The study was conducted at Sri Ramachandra University, Chennai, a Tertiary Care Pediatric Hemato Oncology Unit. Parents who lost their child to cancer, treated in our institution were interviewed with a validated prepared questionnaire. Statistical analysis was performed using SAS statistical software package.Results:Toward death, dullness (30%), irritability (30%), and withdrawn from surroundings (10%) were the most common symptoms encountered. About 30% of the children had fear to be alone. About 50% of the children had the fear of death. Pain, fatigue, loss of appetite were the main distressful symptoms that these children suffered from parents’ perspective. Though the parents accepted that the child was treated for these symptoms, the symptom relief was seldom successful.Conclusion:The conclusion of the study was that at the end of their child's life, parents value obtaining adequate information and communication, being physically present with the child, preferred adequate pain management, social support, and empathic relationships by the health staff members.
Improved outcomes can be achieved in children with HB even in countries with limited resources when they are managed by MDTs with expertise in pediatric oncology, liver resection, and liver transplantation.
Intermittent clobazam therapy is an effective measure in the prevention of recurrence of febrile seizures. The ataxia due to clobazam was much lower than that reported with diazepam.
Introduction:Childhood malignancy, although a rare phenomenon, is still the leading cause of mortality in the pediatric population. Early diagnosis and treatment are imperative for the achievement of optimal prognosis. The study of factors facilitating the delay in diagnosis is thus of utmost importance, to both shorten the diagnostic delay and allow for early therapeutic intervention, facilitating a higher prognosis.Objective:To assess the referral pattern and the identification of potential delays in the diagnosis of childhood malignancy in a developing country.Methodology:The study was conducted in the Pediatric Hematology and Oncology department of Sri Ramachandra University, Chennai, India. The study included randomly selected 70 pediatric patients diagnosed with a hematological malignancy, from July 2012-August 2013. The parents were interviewed using a prepared questionnaire about patient symptomatology, interaction with healthcare providers, final diagnosis, and referral details. Data were statistically analyzed using Statistica® (STATsoft).Results:70 patients were included in the study (69% boys, 31% girls). The diagnostic delay was primarily due to the delay experienced in the healthcare system, with a mean delay of 26 days (Median: 18; Range: 5-39). Those from a lower socioeconomic background and whom opted for a non-allopathic treatment approach experienced higher diagnostic delays. Diagnostic time was significantly shorter for those who visited a pediatrician versus the patients who visited a general physician or super specialties (P = 0.043).Conclusions:Diagnostic delay is often associated with an extensive disease presentation, an aggressive therapeutic approach, and has a negative impact on patient prognosis. To lower mortality rate and facilitate a favourable prognosis, diagnosis requires a high degree of clinical suspicion and immediate intervention.
Neutropenic patients with bacteraemia need prolonged intravenous antibiotic treatment. Using cytometric bead array technology, we show in children with febrile neutropenia that bacteraemia is associated with an elevation of at least 1 of 3 plasma cytokines plus C-reactive protein. The combination of interleukin (IL)-8, IL-6, IL-10, and C-reactive protein values above operator-defined cutoff levels identified 15 of 16 episodes of bacteraemia, making this a potentially useful technique in identifying high-risk patients who should not be discharged early from hospital. Furthermore, low risk of bacteraemia may be predicted by a combination of below threshold cytokines and negative clinical examination.
Background MicroRNAs (miR) have been reported to be involved in hematopoiesis and in the pathogenesis of several hematological malignant neoplasms. Single-nucleotide polymorphisms (SNPs) in human miR genes may alter the expression of those genes and influence the predisposition to childhood leukemia. Objective To evaluate the association of rs2910164 G>C, rs57095329 A>G and the expression of miRNA-146a in ethnic South Asian children with acute lymphoblastic leukemia (ALL). Method Genotyping and expression analysis using TaqMan Small RNA Assay was performed on 71 patients with pathologically confirmed ALL and 74 control individuals. Results No statistically significant association was found between the 2 SNPs, its expression levels, and ALL risk. Conclusion Haplotype analysis indicated a combination of allele A of rs57095329 and allele G of rs2910164 could represent a risk haplotype and an allele combination of G of rs57095329 and G of rs2910164 could represent a protective haplotype for ALL.
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