A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India.

BACKGROUND: Cure 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. METHODS: Semi-structured in-depth interviews were conducted with caregivers of children (< 18 years) diagnosed with cancer in seven tertiary care hospitals across New Delhi and Hyderabad. Purposive sampling to saturation was used to ensure adequate representation of the child's gender, age, cancer type, geographical location and socioeconomic status. Interviews were audio recorded after obtaining informed consent. Thematic content analysis was conducted and organised using NVivo 11. RESULTS: Thirty-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. CONCLUSION: This 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.

Mineralizing angiopathy with infantile basal ganglia stroke after minor trauma.

AIMS: The objective of this study was to describe a cohort of infants with basal ganglia stroke associated with mineralization in the lenticulostriate arteries and their clinical outcomes. METHOD: Subcortical strokes occurring in infants during the study period were categorized as arterial ischaemic, venous, or haemorrhagic. A cohort of infants with basal ganglia infarcts and associated mineralization of lenticulostriate arteries were identified. This group was analysed for possible aetiological factors, clinical course, and recurrence rate of the stroke. RESULTS: Of 23 infants with basal ganglia arterial ischaemic stroke, 22 (16 males, six females; mean age 11mo [±SD 4.8mo]) were found to have lenticulostriate artery mineralization. Twenty infants presented with hemiparesis and two presented with recurrent episodes of hemidystonia. Eighteen infants had a history of minor trauma before onset of stroke. No other predisposing factors were identified in this cohort. There were no demonstrable causes for vascular and soft tissue calcification. The mean follow-up was 11 months, during which five infants experienced stroke recurrence. Of the 17 infants who did not experience a recurrent stroke, eight exhibited complete neurological recovery, and nine had mild residual hemiparesis. INTERPRETATION: Acute basal ganglia stroke after minor trauma associated with mineralization of lenticulostriate arteries in infants is a distinct clinicoradiological entity. Investigations for prothrombotic states and vasculopathies are normal. Although neurological outcomes in most children are good, trauma is a risk factor for recurrence of stroke.

Spectrum of systemic bacterial infections during febrile neutropenia in pediatric oncology patients in tertiary care pediatric center.

BACKGROUND: Outcome of pediatric cancers has significantly improved with modern chemotherapy and good supportive care. However, febrile neutropenia remains one of the important limiting factors in these patients especially with the emergence of resistant organisms. Choosing appropriate antimicrobials is possible only if we understand the local microbial spectrum and their sensitivity pattern. AIMS: To study the likely etiologic agents and their antibiotic sensitivity pattern among systemic infections in children with cancer. SETTINGS AND DESIGN: This is a prospective study. MATERIALS AND METHODS: The study was conducted at a tertiary care center for pediatrics, in which culture samples representing blood stream infections and others like urinary tract infections sent from the Oncology services of the Hospital during the year of 2013 were analyzed. The microbiological profile and antibiotic sensitivity pattern of these isolates were studied. RESULTS: There were 89 isolates that represented blood and urinary tract infections in neutropenic patients with cancer.Out of 89 positive cultures 76 were gram negative isolates. The most common gram negative bacterial isolates were Escherichia coli 33 (37%), followed by Pseudomonas 21 (23.5%). Acinetobacter grew in 2 patients (2.2%). Extended spectrum beta-lactamases (ESBL's), carbepenem resistant and pan-resistant organisms seen in 28 (31.4%), 5 (5.6%) and 2 cases (2.3%) respectively. Over all Gram-positive organisms were 13/89 (12.3%). Staphylococcus was the most common Gram-positive organism and methicillin resistant Staphylococcus aureus seen in 5 each. CONCLUSION: Gram-negative organism is a common isolate in cancer children with febrile neutropenia, which is resistant to first-line antibiotic cefepime. Meropenem is most sensitive antibiotic and ESBL's are sensitive to piperacillin-tazobactam.