Accessing childhood cancer care in the era of Universal Health Coverage: Insights from India

Abstract

Childhood cancers are a rare group of diseases for which despite relatively high cure rates for some cancers when detected early, survival rates remain low in many low and middle-income countries (LMICs) compared to high income countries. This is in part due to multiple socioeconomic and health system related factors impeding access to timely diagnosis and treatment. An essential component of Universal Health Coverage (UHC) is improving ‘access to health services’ and ensuring all people have equitable access - including children with cancer, particularly since health systems strengthening for childhood cancers is likely to improve the health system for other disease conditions as well. For UHC to include a disease like childhood cancer, an understanding of the barriers to accessing childhood cancer care at the individual and health system levels is necessary. India manages childhood cancers through a fragmented health system while simultaneously embarking upon a commitment towards achieving UHC. While research has been undertaken on childhood cancer care in India, there are still gaps in research regarding specific health system and individual barriers to cancer diagnosis and treatment for children. Therefore, the overarching aims of this thesis were to identify and understand barriers in accessing childhood cancer care and to explore how these findings might assist in the quest to achieve UHC. This thesis did not aim to prescribe any single approach or package for the inclusion of childhood cancers in UHC, nor does it evaluate policy-making strategies or financial measures to support this. Rather, this thesis aims to present evidence of access to care issues which should be considered when developing actionable UHC policy agendas for addressing childhood cancer care in India. The thesis addresses its aims through a series of interrelated qualitative and quantitative methodological studies which highlight delays to diagnosis and treatment as well as health system and individual related barriers affecting access to care. It concludes with examining the current strategies for childhood cancer care in India and recommendations for future advancements