Initial Results from Qualitative Study….
  • Have provided preliminary data related to time to presentation, diagnosis, and treatment and reveal the need for further research in this area.
  • Of the 39 caregivers of children with cancer who were interviewed across 5 cities in India….
    • The average number of days between identification of first symptoms by the caregiver and diagnosis of cancer was 86. Families experienced a significant degree of variation ranging from a minimum of 4 days (minimum) to 886 days (maximum).
    • Similarly, the average number of days between diagnosis and start of treatment for these families ranged from 0 days (same day) and 62 days with an average of 13 days.
  • This high degree of variability indicates a need for additional data collection and further research into precipitating factors.
 
Background:
  • Health Services Accessibility (Medline) - The degree to which individuals are inhibited or facilitated in their ability to gain entry to and to receive care and services from the health care system. Factors influencing this ability include geographic, architectural, transportational, and financial considerations, among others.
  • There is a greater burden of barriers to accessing healthcare services in low and middle-income countries (LMICs) like India. This may have a negative impact on outcomes.
  • Barriers to accessing care of children with cancer has not been well investigated.
  • Specifically, only 7% (12 out of 172) of studies analyzed in four different systematic reviews related to time to diagnosis and treatment in childhood cancer were from LMIC.
  • There has been only one published study from India till date which related to 762 children with a single childhood cancer (acute lymphoblastic leukemia) in a single public hospital in North India. The mean time interval from onset of symptoms to diagnosis was 60 days and this interval was not an independent predictor of outcome.
Objectives:
  1. Map the journey of Indian children with cancer from the time of onset of symptoms till the start of treatment including all points of health-care contact so as to provide visual representation of how children with cancer access care in India.
  2. Identify differences in access to care of children with cancer in India by region/state, gender, type of cancer and socio-economic status.
  3. To investigate barriers to accessing care from the perspective of the parent/caregiver
  4. Measure the components of time-to-treatment of children with cancer in India including the following intervals:
    1. Patient Interval: First symptom to first clinical presentation
    2. Diagnostic Interval: First clinical presentation to diagnosis
    3. Treatment Interval: Diagnosis to treatment start. 
  5. Compare these intervals by age, gender, type of cancer, region/state, distance from treatment center, and socio-economic status
  6. Correlate intervals that comprise time-to-treatment with the stage at presentation and event-free survival.​
Desired Outcomes and Impact:
  • By using a rigorous methodology and systematically collected data on diagnosis and treatment intervals, the determinants, the impact and mapping out patient journeys, our goal is to render an accurate picture of access to healthcare for a child diagnosed with cancer in India at a nationwide level.
  • These results will also potentially serve to inform government bodies & policy makers, hospital administration, the practice of clinicians, as well as the missions of charities, NGOs and patient support groups.
  • Interventions by all these stakeholders will lead to improved childhood cancer outcomes and better cancer control. Further this will also have benefits for the global community as several parallels can be drawn from our findings.
  • The qualitative portions of this study will enrich existing data allowing for the deeper exploration of barriers to accessing care from the perspective of the caregiver that cannot be derived from epidemiological data alone.