Stakeholder's Perspectives on the Barriers and Facilitators of Childhood Cancer Care in India

Abstract

Objective: To explore the stakeholders’ perspectives on barriers and facilitators influencing childhood cancer care delivery in India. Methods: A nationwide survey was conducted across 26 states and 4 Union Territories, involving childhood cancer physicians from tertiary and secondary hospitals, state nodal officers (SNOs) for the National Programme for Control of Non-Communicable Diseases (NP-NCD), and representatives from Civil Society Organizations (CSOs) and Non-Governmental Organizations (NGOs). A hub-and-spoke sampling model was employed, with designated tertiary hospitals coordinating data collection from secondary hospitals. An online survey tool assessed perceived challenges and facilitators in childhood cancer care. Data collection occurred from July to September 2021, and descriptive statistics were used for analysis. Results: Responses were received from 137 tertiary hospitals (100%), 92 secondary hospitals (91%), 16 SNOs (53.3%), and 9 CSO/NGO representatives (23.1%). Key barriers to diagnosis and treatment included shortage of human resources, beds, and equipment, along with advanced-stage presentation and inadequate back-referrals from tertiary to secondary hospitals. Treatment abandonment and denial were highlighted as major concerns. SNOs and CSOs identified financial constraints, limited insurance coverage, and reliance on traditional healers as additional challenges. Facilitators included strengthening referral networks, expanding diagnostic capabilities, ensuring free treatment and medications, and improving infrastructure and workforce capacity. Conclusion: Resource constraints, late-stage presentation, treatment abandonment, and financial challenges are the significant barriers to childhood cancer care in India. Addressing these through improved referral systems, expanded diagnostic services, financial support mechanisms, and policy-level interventions are needed to enhance childhood cancer care outcomes and quality of life.