Optimising Palliative Care for Children with Metastatic Neuroblastoma and the Paediatrician's Role in a Shared Care Model - Proposal from a Regional Cancer Centre in India.

Objectives: The burden of advanced and metastatic cancer is high among children in developing countries, and palliative care (PC) services for children are sparsely available and poorly accessed. To estimate the burden of PC requirements in children with metastatic neuroblastoma (NB), and to evaluate the PC services offered. Materials and Methods: Retrospective analysis of case records of children 1-14 years diagnosed with metastatic NB from 1 January 2008 to 31 December 2017. Results: One hundred and nineteen patients with metastatic NB were included, of which 87 patients received PC consultation. Early PC referral occurred only in 13 patients (14.9%), and pain was the most prominent symptom. Shifting of care from oncology to PC occurred at disease relapse in 58 patients (66.6%) and at end-of-life in 16 patients (18.3%). Nausea/vomiting, constipation and abdominal distension were the most common symptoms during end-of-life. Seventy-one patients (85%) died of disease, median time to death being 9 months from diagnosis and 4 months from relapse. The mean time from initiation of PC to death was 4.2 months. Conclusion: Timely integration of PC and shared care incorporating the oncology team, PC team and local paediatricians can ease out transition in care, ensure a continuum of care and improve the quality of treatment delivered to children with metastatic cancer.

Iron Overload in Children with Leukemia Receiving Multiple Blood Transfusions.

OBJECTIVE: To find out prevalence of iron overload in children with leukemia at the end of treatment, and to identify factors affecting iron overload. METHODS: Children (age-1-14 y) treated for Leukemia of our center who completed treatment between January and August 2016 were included in the study. Serum ferritin and iron were measured at completion of treatment and total blood transfusion received throughout treatment was quantified. Serum ferritin >1000 ng/mL was considered as marker of transfusional iron overload. RESULTS: Out of 66 participants, 55 (83.3%) received red cell transfusions. Average transfused volume was 48 mL/kg, and patients with high-risk leukemia received more transfusions than standard-risk patients. 16 patients (24.2%) demonstrated transfusional iron overload. Total transfused volume and treatment intensity were significant factors associated with iron overload, and total transfused volume of >100 mL/kg (approximately 10 transfusions) was the most important determinant of transfusional iron burden. CONCLUSIONS: One-fourth of pediatric leukemia patients demonstrated iron overload at the end of treatment. These patients need to be monitored and followed-up after treatment to assess need for later chelation therapy.

Parents' Knowledge and Attitude Regarding Their Child's Cancer and Effectiveness of Initial Disease Counseling in Pediatric Oncology Patients.

OBJECTIVE: To examine parent's knowledge, attitude and psychosocial response regarding their child's cancer and treatment after initial disease counseling by doctor. MATERIALS AND METHODS: Structured questionnaire based study of 43 mothers of newly diagnosed pediatric cancer patients undergoing treatment in pediatric oncology division. Mothers received initial counseling regarding their child's cancer and treatment from the doctor. Questionnaire was administered 2-6 months after initial counseling and mothers self-reported their responses. RESULTS: 83% mothers had school level education only and 84% belonged to lower and middle socio-economic status. More than 80% mothers knew the name of their child's cancer, type of treatment received by child and approximate duration of treatment. 93% knew regarding painful procedures and 84% mothers reported knowledge about chemotherapy side effects. Hope of cure and satisfaction with treatment were reported by 90% mothers. 81% mothers reported high levels of anxiety and 66% worried regarding painful procedures. As high as 60% of parents were afraid to send their child outside to play and 40% were afraid to send their child to school. 40% mothers wanted more information regarding child's higher education, married life & fertility. On statistical analysis, mother's age, educational status or family background did not influence their knowledge and attitude. CONCLUSION: Relevant information about child's cancer and treatment can be imparted effectively even to mothers with school level education. This knowledge helps to instill hopeful attitude, confidence and satisfaction in parents. Anxiety and fear related to cancer persists in mothers even after the initial stress period is over. Pain related to injections and procedures is a major concern in parents. Involvement of counselor in the treating team is desirable to overcome these problems.

Effect of a new social support program by voluntary organization in pediatric oncology department in a developing country.

Comprehensive childhood cancer treatment in the modern era means not only strenuous treatment regimens and meticulous nursing care, it also implies attention to social, psychological, and financial aspects of disease and treatment. In a developing country like ours, though it is possible to provide good medical and nursing care in government set-up, there is always shortage of workforce and financial support, leading to nonadherence to treatment regimens by patients and parents, resulting in suboptimal treatment outcomes. Overcrowding of pediatric cancer patients along with general patients for lab tests and other hospital services, poor drug compliance, treatment abandonment, and lost to follow-up, lack of funding to meet nonmedical expenses and inadequate facility for providing psychological support were some of the major reasons we could identify as lacunae in our pediatric oncology division (POD). We introduced a new social support program with the help of additional staff supported by a nongovernmental agency, and new quality improvement services were introduced. The impact was demonstrable as reduction in waiting time in the hospital, allayed anxiety of painful procedures, better drug compliance, less treatment abandonment, and improved follow-up. This can be emulated in similar other resource-limited centers.