Search

BackgroundCure rates for children with cancer in India lag behind that of high-income countries. Various disease, treatment and socio-economic related factors contribute to this gap including barriers in timely access of diagnostic and therapeutic care. This study investigated barriers to accessing care from symptom onset to beginning of treatment, from perspectives of caregivers of children with cancer in India.MethodsSemi-structured in-depth interviews were conducted with caregivers of children (ResultsThirty-nine caregivers were interviewed, where three key themes emerged from the narratives: time intervals to definitive diagnosis and treatment, the importance of social supportive care and the overall accumulative impacts of the journey. There were two phases encapsulating the experiences of the family: referral pathways taken to reach the hospital and after reaching the hospital. Most caregivers, especially those from distant geographical areas had variable and inconsistent referral pathways partly due to poor availability of specialist doctors and diagnostic facilities outside major cities, influence from family or friends, and long travel times. Upon reaching the hospital, families mostly from public hospitals faced challenges navigating the hospital facilities, finding accommodation, and comprehending the diagnosis and treatment pathway. Throughout both phases, financial constraint was a recurring issue amongst low-income families. The caregiver’s knowledge and awareness of the disease and health system, religious and social factors were also common barriers.ConclusionThis qualitative study highlights and explores some of the barriers to childhood cancer care in India. Our findings show that referral pathways are intrinsically linked to the treatment experience and there should be better recognition of the financial and emotional challenges faced by the family that occur prior to definitive diagnosis and treatment. This information would help inform various stakeholders and contribute to improved interventions addressing these barriers.

Aim: One of the causes for lower cure rates in acute childhood leukemia in low- and middle- income countries (LMIC) compared to high-income countries is abandonment from treatment. The International Society of Pediatric Oncology (SIOP) defines abandonment as failure to begin treatment or an absence of 4 weeks during treatment. The aim of this study was to evaluate the extent of abandonment among patients diagnosed with acute myeloid leukemia (AML) at the pediatric ward at a low-resource cancer center in India. Methods: Medical records of all patients, aged 0–15 years, diagnosed with AML between January 1, 2014, and March 31, 2015, at the hospital were reviewed. Age, sex, date of diagnosis, and survival during the short follow-up time after completed treatment and information regarding abandonment were collected. SIOP definition of abandonment was used. Eight patients were diagnosed with AML at the hospital whereof 65 met the inclusion criteria of this study. Results: Of the included 65 patients, 6 died before treatment could be initiated and 3 were referred to palliative care upfront. Thus, 56 patients were offered curatively intended treatment. Of these patients, six refused treatment at this stage and another five abandoned during therapy. Altogether, 11 children abandoned treatment. Conclusion: In this study, the abandonment rate from treatment of childhood AML was 20%, which is in concordance from other studies conducted in India and other LMIC, stating that abandonment is a problem and hindrance when treating with a curative intent.

Objectives: The objective of this study to comprehensively analyze bone marrow (BM) infiltration by nonhematological round cell tumors. Materials and Methods: A total of 206 diagnosed cases of small round blue cell tumors (excluding lymphomas) during a period of 2½ years, referred for BM examination were included in the study. Clinical details were obtained from medical records. BM aspiration (BMA) and BM biopsies (BMBx) were performed under local anesthesia for staging workup. BMBx were studied for cellularity, presence of infiltration by round cells (nonhematopoietic), histologic patterns (island/nests and diffuse sheets), fibrosis, necrosis and other secondary changes. Immunohistochemistry panel was used depending on the morphology. Results: The cases included age range from 45 days to 25 years with a median age of 12 years. There was a male predominance with male:female 1.5:1. Among these, 37/206 cases (17.9%) were positive for BM involvement (BMI) on BMBx. Of these, 24 cases were neuroblastoma (64.8%), 9 cases Ewing’s sarcoma/primitive neuroectodermal tumor (24.3%), and 4 Rhabdomyosarcoma (10.8). BMBx was done in all the 206 cases. Among these, 37/206 cases were positive for BMI on BMBx while 35/206 cases were positive on BM imprints and 33/206 cases were positive on BMA. Conclusion: Detection of metastasis in the BM has both therapeutic and prognostic significance. BMBx are complementary in the diagnosis of small round cell tumor.

Aim: Childhood cancer patients are subjected to recurring painful medical procedures. In low- and middle-income countries (LMIC), where the majority of the world’s childhood cancer patients live, pain management is often unsatisfactory due to limited resources. This study aimed to evaluate the possibility of conducting a preprocedural preparation for lumbar punctures (LPs) at a pediatric oncology unit in a LMIC and to assess whether this intervention would decrease procedural pain and fear. Methods: Patients aged 5–18 who underwent LPs between February 25, 2017, and April 12, 2017, were eligible and invited to participate. Included patients were interviewed to assess the procedural pain and fear in conjunction with the LP and the patients’ understanding of why an LP was done. Closest caregivers and the medical staff were interviewed to compare the perceptions of pain. The study was conducted in two separate phases; patients included in the period of February 25–March 9 underwent LP according to routines without preparation while patients included in the period of March 10–April 12 received procedural preparation with information. Results from the interviews from the two study groups were compared. Results: Out of 79 patients who met the inclusion criteria, 76 were included and preparation was successfully implemented for 25 of them. The pain decreased significantly (P = 0.022) after preparation. The physicians underestimated the patients’ pain (P < 0.0001). The understanding of the reason for the LP increased significantly among patients (P = 0.0081) and their caregivers (P < 0.0001). Conclusions: Preparation by preprocedural information, created to fit the situation at a state-run hospital in a LMIC, is feasible and efficient.

The primary objective of this study was to describe demographics and end-of-life treatments of children with cancer at a government tertiary cancer center in India.A retrospective review was undertaken of medical charts of all children younger than 18 years, who died as inpatients while undergoing treatment at the pediatric oncology department between April and September 2016. Data were collected on demographics, diagnosis, treatments, survival, palliative care involvement, and symptoms at end of life.There were 44 pediatric oncology patients who died in the hospital during the study period. The most frequent diagnoses were hematological malignancies (n = 29). Tumor-specific treatment was given to 38/44 (86%) patients in the last 30 days of life, and 13 patients in the last day of life or 1 day before. Of all deaths, 23/44 (52%) occurred within 30 days of admission to the pediatric ward and 34/44 (77%) within 90 days. Of the 44 patients, 25 (57%) were referred to palliative care. The median number of days between referral and death was 14 (0-78) days. Frequent symptoms documented were bleeding (11/44), dyspnea (10/44), pain (7/44), seizures (7/44), and delirium (5/44), with each patient having one or more of these symptoms. Only patients with a palliative care referral received opioid analgesics or benzodiazepines at the end of life.This study highlights the demographics of suffering, death, and end-of-life care in children with cancer at a government tertiary cancer center in India.

Aim: The aim of this study was to evaluate the therapeutic efficacy and safety profile of orally administered low-dose ketamine for procedural pain management in pediatric cancer patients ...

To study to what extent tumor-specific treatment (chemo- or radiotherapy) was given during the last 30 days in life and to examine how many of the patients were referred to a specialized palliative care unit (PCU), at a low-resource governmental hospital in India.Medical records of adult cancer patients deceased between April 1 and May 31 in 2016, and pediatric cancer patients deceased between April 1 and September 30 in 2016 were collected. Data regarding gender, age at admission, cancer diagnosis, tumor-specific treatment received, referral to the PCU, and date of death, were sampled.A total of 96 patients (52 adults and 44 pediatric patients) were included in the study. In the last 30 days of life, tumor-specific treatment was given to 39 adult patients and 38 pediatric patients. During the last week in life, 26 adult and 25 pediatric patients, respectively, received tumor-specific treatment. Twenty-six adult and 25 pediatric patients, respectively, were referred to the PCU. End-of-life (EoL) tumor therapy was given to a lesser extent among referred patients.Eighty percent of the patients were given tumor-specific treatment near EoL. Half of the patients had been referred for specialized palliative care (SPC).

Context: Nurses in India often practice in resource-constrained settings and care for cancer patients with high symptom burden yet receive little oncology or palliative care training. Aim: The aim of this study is to explore challenges encountered by nurses in India and offer recommendations to improve the delivery of oncology and palliative care. Methods: Qualitative ethnography. Setting: The study was conducted at a government cancer hospital in urban South India. Sample: Thirty-seven oncology/palliative care nurses and 22 others (physicians, social workers, pharmacists, patients/family members) who interact closely with nurses were included in the study. Data Collection: Data were collected over 9 months (September 2011– June 2012). Key data sources included over 400 hours of participant observation and 54 audio-recorded semi-structured interviews. Analysis: Systematic qualitative analysis of field notes and interview transcripts identified key themes and patterns. Results: Key concerns of nurses included safety related to chemotherapy administration, workload and clerical responsibilities, patients who died on the wards, monitoring family attendants, and lack of supplies. Many participants verbalized distress that they received no formal oncology training. Conclusions: Recommendations to support nurses in India include: prioritize safety, optimize role of the nurse and explore innovative models of care delivery, empower staff nurses, strengthen nurse leadership, offer relevant educational programs, enhance teamwork, improve cancer pain management, and engage in research and quality improvement projects. Strong institutional commitment and leadership are required to implement interventions to support nurses. Successful interventions must account for existing cultural and professional norms and first address safety needs of nurses. Positive aspects from existing models of care delivery can be adapted and integrated into general nursing practice.