Catastrophic expenditure and treatment delivery outcomes in patients with colorectal cancer in India: a prospective, multicentre cohort study

Little is known about the factors preventing patients with colorectal cancer in India from receiving the treatment they need to reach the best oncological outcomes. Patients often struggle to pay for cancer care, possibly leading to treatment dropout. The aim of this study was to assess treatment adherence and catastrophic expenditure rates in a cohort of patients with colorectal cancer in India.This was a prospective, multicentre cohort study of consecutive patients with colorectal cancer offered a treatment plan for colorectal cancer in tertiary care hospitals in India (including curative and palliative treatment). Patients recruited from Dec 20, 2020, to Aug 31, 2021. Treatment adherence and catastrophic expenditure were assessed at 6 months after a treatment plan was made (at a multidisciplinary meeting or outpatient clinic). Treatment adherence status was categorised as adhering or deviating from the treatment outlined by the clinical team. Reasons for treatment plan deviations were recorded. Catastrophic expenditure was defined as an out-of-pocket expenditure for cancer care higher than 25% of total household income. Direct medical, direct non-medical (ie, travelling, accommodation, and food costs), and indirect (ie, patient income loss) out-of-pocket payments were included and reported.226 patients from five tertiary care hospitals in five different states of India were included, of which 20 (9%) patients died before the 6-month follow-up and four (2%) were lost to follow-up. 97 (48%) of the remaining 202 patients had colon cancer and 105 (52%) had rectal cancer. Most patients (172 [85%] of 202) had advanced disease at presentation to tertiary care, of which 145 (84%) had a treatment plan with curative intent and 27 (16%) underwent palliative treatment. 28 (14%) of 202 patients had a deviation from their treatment plan. Overall, nine (4%) of 226 had clinical reasons for not following the treatment plan (ie, side-effects, other clinical conditions), whereas 19 (9%) of 202 reported non-clinical reasons, including declining treatment or opting for alternative medicine options (n=14), inability to pay (n=3), inability to travel (n=1), and unspecified reasons (n=1). Most patients (182 [90%] of 202) were undergoing catastrophic expenditure at 6 months after a decision for treatment. On average, patients spent 74% as out-of-pocket payments for cancer care in direct medical costs, 22% in non-medical costs, and 4% in indirect costs.One in every ten patients with colorectal cancer in tertiary care hospitals in India either decline or are unable to continue receiving treatment. Wider community research and interventions are needed to mitigate against individual decisions for treatment dropout. Catastrophic expenditure rates are high and non-medical costs account for a quarter of the total expenditure for cancer care. Financial protection strategies need to be implemented in India to improve treatment delivery and protect households.National Institute for Health Research Global Health Research Unit Grant (NIHR 16.136.79) with aid from the UK Government to support global health research.