India's First National Childhood Cancer Survivorship Study Reveals Promising Outcomes
For countless families throughout India, hearing the words "cancer-free" represents a profound moment of relief and the start of a new chapter. However, the critical period following the completion of treatment has historically been poorly documented across the nation. On the eve of International Childhood Cancer Day, researchers have unveiled groundbreaking findings from India's inaugural large-scale, national childhood cancer survivorship program.
Tracking Over 5,400 Survivors Across Major Centers
The comprehensive study meticulously tracked more than 5,400 children who successfully completed their cancer treatments across 20 specialized medical centers. These facilities are located in major metropolitan areas including Delhi, Mumbai, Chennai, Kolkata, and Bengaluru. Launched in 2016 by the Indian Paediatric Haematology Oncology Group, the Indian Childhood Cancer Survivorship study has now been published in the prestigious journal 'The Lancet Regional Health - Southeast Asia'.
Dr. Rachna Seth, the lead author and chief of the oncology division in the department of paediatrics at AIIMS, New Delhi, explained that the initiative was conceptualized in 2014 and became fully operational by 2016. The analysis encompasses comprehensive data collected from 2016 through 2024, providing a robust longitudinal perspective.
Shifting Focus from Acute Care to Long-Term Survivorship
"For many years, the primary focus was solely on acute care—ensuring that children survive their cancer diagnosis," Dr. Seth stated. "But now we have clear evidence that many children do survive, and they have decades of life ahead of them. What truly matters next is understanding how they live after completing their treatment."
The early findings from this pioneering study are highly encouraging. The five-year overall survival rate stands at an impressive 94.5%, while the event-free survival rate is 89.9%. Remarkably, two years after treatment concludes, the survival rate increases to 98.2%. As of December 2024, follow-up data was available for 5,140 children, with 92% alive and in remission.
Common Cancers and Treatment Modalities
Leukaemia was the most prevalent diagnosis, accounting for 41% of all cases within the cohort. Other leading cancers treated included Hodgkin lymphoma, various bone tumours, and retinoblastoma. The treatment protocols were intensive:
- Nearly all children received chemotherapy as part of their regimen.
- Approximately one in four underwent radiotherapy.
- Close to one-third required surgical interventions.
- More than half needed blood transfusions during their treatment course.
Addressing Long-Term Challenges and Late Effects
Dr. Seth emphasized that survivors may confront significant long-term medical and psychosocial challenges. These potential late effects include fertility concerns, cardiac dysfunction, cognitive issues, risk of relapse, and the development of secondary cancers. "These late effects need to be systematically captured and monitored. Until now, we were largely extrapolating from Western data. India had no substantial survivorship data of its own," she explained.
While the published analysis currently covers 20 centers, the program has expanded, with nearly 35 to 36 centers now actively contributing data. "This extensive dataset provides us with our own crucial baseline for understanding childhood cancer survivorship in the Indian context," Dr. Seth noted.
Key Statistical Insights and Follow-Up Period
The median follow-up period from diagnosis is currently 3.9 years. During this follow-up, approximately 5.7% of survivors experienced a relapse of their cancer, and 4.9% died. These figures underscore the importance of continuous, long-term monitoring and support for childhood cancer survivors to ensure their health and well-being throughout their lives.
This landmark study marks a pivotal shift in pediatric oncology in India, moving beyond survival metrics to comprehensively address the quality of life and long-term health outcomes for the nation's youngest cancer survivors.
