National Society for Childhood Cancer CANKIDS KIDSCAN has Sponsored a first of its kind study among Indian childhood cancer patients (Children with newly diagnosed cancers before the completed age of 18 years) of North and East India to understand as an epidemiological research study to investigate the barrier and time to treatment to drive survival and quality of life outcomes for Children with Cancer in India. This “ACCESS INDIA STUDY” reveals total interval time from onset of symptom to commencement of treatment is 56 days. The study is also registered with The Indian Pediatric Oncology Group (InPOG) has participation from 91 Centers across India.
The study was conducted during July 1st, 2019 in the first phase, and ended on February 28th, 2021 for the last phase on a statistically significant and representative sample of 2877 patients, across 19 states and 37 cities & towns of North & East India under the study team of Dr. Ramandeep Arora, Secretary, Indian Pediatric Oncology Group, Head Quality Care, Research & Impact (QCRI) Cankids Kidscan, Pediatric Oncologist, Max Super speciality Hospital.
This study used a rigorous methodology and systematically collected data on diagnosis and treatment intervals, the determinants, the impact, and mapping patient journeys is the need for an hour to render an accurate picture of access to healthcare for a child diagnosed with cancer in India
The study highlights following several statistically significant findings:
· Average Patient Interval (First symptom to the first presentation to a healthcare provider) doesn’t take more than 3 days i.e., on average basis parents reaches to a healthcare professional within 3 days of first symptom in Childhood Cancer cases. The range for the same is as low as 0 day to as high as 720 days.
· While major delay is at Diagnostic Interval (First presentation to a healthcare provider to diagnosis) where on an average it takes them 37 days to navigate the primary and secondary healthcare system before they reach the specialist hospital and get a diagnosis. The range of this is between 0 to 1448 days.
· Once cancer is diagnosed, Treatment Interval (Diagnosis to treatment start) doesn’t take more than 3 days i.e., on average basis patient treatment starts within 3 days once cancer is diagnosed. This range between 0 to 282 days.
· Total interval from onset of symptom to commencement of treatment is 56 days. The range for the same is as low as 1 day to as high as 1473 days
The study also shows that healthcare administration of India needs to act in right direction if we want to significantly improve access to care for children with cancer in our country. Two out of three children came from families with a monthly income of less than 11,900 INR. The three most common cancers were blood cancer (53%), bone and soft tissue sarcomas (14%), and lymphomas were 13%.
Dr. Ramandeep Arora, Secretary, Indian Pediatric Oncology Group, Head QCRI Cankids Kidscan Pediatric Oncologist, Max Super speciality Hospitals, said “Accessing diagnosis and quality treatment in a timely fashion is perhaps the single most important step in improving the outlook of children with cancer in India.”
Ms. Poonam Bagai, Chairman Cankids Kidscan, said “our extensive work for Change for Childhood Cancer across 15 states project indicates that only 34% of the children reach any cancer treating centre, we are committed towards reaching 50% Access to care by 2025 and 100% by 2030 thereby working towards WHO mandate for at least 60% survival rate by 2030. We invested in this vital study and its results will improve Access to care by creating new policies, interventions and services by govt, hospitals, clinicians, NGO’s like us and patient support groups.”
“The initial findings of the study underscore the importance of sensitizing and training healthcare professionals and workers at CHC’s, PHC’s& secondary healthcare institutions to improve their ability to progress primary care evaluation, how to diagnose at the earliest and where to refer for treatment”. Ms. Bagai further added.
Cancer is the leading cause of death worldwide accounting for 10 million deaths in 2020. It is generally regarded as a disease of adults with less than 1% of cancer in the high-income countries (HICs), occurring in children less than 15 years of age. However, in India where children comprise more than a third of the population, the proportion of childhood cancers can be up to 5% of all cancer burden. It is estimated that worldwide there are about 400,000 new cases of cancer occurring in children (0-19) years of age every year out of which near 76,805 cases of childhood cancer occur in India. (WHO) Around 50% of the children in India remain undiagnosed and have no access to treatment. Those who do access care often present with an advanced stage of disease and a lower probability of cure. The challenges to accessing healthcare could lead to an advanced stage at diagnosis and treatment potentially contributing to poor outcomes.
Long treatment intervals lead to delay in diagnosis and treatment, hence the poor outcome of childhood cancer in countries like India. The healthcare system-related delays are the major contributor to the overall delay. To achieve the standard of access to care and to address the factors associated with these delays there is a need for evidence-based planning at a large scale.