Assessing the palliative care needs of children with cancer and their families in tertiary care centres in India: A multicentre observational study.

Abstract

Background: Children with cancer face a significant physical and psychosocial burden, highlighting the need for paediatric palliative care (PPC). Global estimates indicate that over 21 million children require PPC. However, in low- and middle-income countries such as India, the need is largely unknown, and access remains limited, necessitating the conduct of this study.

Methods: A multicentre, prospective, cross-sectional study was conducted across three tertiary cancer centres in India to assess the palliative care needs of 150 children with cancer and their families using the Paediatric Palliative Screening Scale (PaPaS). The PaPaS tool evaluated five domains, and the total scores were used to stratify the need for PPC. The three participating centres differed in patient flow and the extent of palliative care integration, representing academic and public healthcare settings.

Results: Based on PaPaS scores, 49.3% of children with cancer had moderate (secondary) palliative care needs, 36.7% required introduction to palliative care, 11.3% had minimal needs that paediatric oncologists could manage, and 2.7% required palliative care as the focus of treatment. Psychological distress was significantly higher among family caregivers (57%) than in patients themselves (33%). While 91% of families were open to palliative care discussions, clinicians perceived that only 4.7% (7/150) of children would likely benefit from referral to palliative care services. Domain-specific analysis revealed significant correlations between treatment burden, family distress, and overall palliative care needs.

Conclusion: There is a significant unmet need for integrated PPC among children with cancer in India, exacerbated by a very small number of them accessing care due to non-referral by oncologists or the unavailability of PPC.