Patterns of End-Of-Life Care in Children with Cancer in India - AMulticentre Retrospective Study

There are an estimated 50,000 children (0–18 years of age) diagnosed with cancer annually in India, with an estimated five-year survival of 37–40%. More than half of these children die, either of disease or from treatment toxicity. Palliative care aims at relieving physical, emotional, social and spiritual suffering during the continuum of the cancer journey including end-of-life. It is considered integral to cancer care for children in all settings, and the benefits of pediatric palliative care at improving symptom management and reducing inappropriate use of high-intensity care is well described in high-income countries (HIC). Studies from low-and middle-income countries (LMIC)are essential to define the global need for pediatric palliative care, since the demographics of suffering and death are expected to differ and so must the provision of pediatric palliative care. For children with cancer who die in India, there are very limited data on the availability or provision of palliative care. This multicentric observational retrospective Indian Pediatric Oncology Group (InPOG) study aims to describe the patterns of end-of-life care and demographics of children with cancer who die at health facilities and at home(for children who received community-based palliative care services)in India during a five time period (Jan 1, 2017 - Dec 31, 2021). Participating centres will include hospitals (public, private, trust) which are treating children with cancer, as well as hospices/palliative care facilities, and community-based palliative care services which provide care for children with cancer, with broad geographical representation from across India. Data regarding demographics, cancer diagnosis, cause of death, symptoms experienced in the last 2 days of life, tumor-specific and symptomatic treatments, palliative care referral, family counselling and end-of-life discussions will be collected. Intensity of lifesustaining therapy (tumor-specific treatments and high intensity therapy) and symptom management at the end-of-life will be compared with accessibility to specialized palliative care services. A sample size of 780 will allow us to describe patterns of end-of-life care in children with cancer in India and also specifically examine that involvement of a specialized palliative care team is associated with a 20% reduction in high intensity care in these patients.