Access, affordability and barriers to cancer care in India: stories of patient journeys
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MPH Global Health, Tata Medical Center, India
MRC Clinical Trials Unit, Institute of Clinical Trials and Methodology, University College London, United Kingdom
Tata Medical Center, India
Publication date: 2023-04-27
Popul. Med. 2023;5(Supplement):A1577
Background and objective: Cancer burden versus resources are inequitably distributed in low and middle income countries. Access and affordability to oncology services are limited for the majority of rural and semi urban India. This contributes to late presentation and poor outcome. The present qualitative study aimed at gaining a deeper understanding of patient experiences, social barriers and facilitators of care seeking in Indian cancer patients. The study attempted to identify treatment-seeking pathways of patients and explore reasons for delays and roadblocks. Methods: In this is a cross sectional qualitative study, using in-depth interviews, purposive sampling was used with proportionate representation of all common cancer types. The interviewers had access to an interview guide that acted as an aide-memoire to help the interview process but we progressively enquired newer areas brought up in earlier interviews till data saturation was reached. Data was analyzed using the qualitative content analysis frame work. Results: Cancer patients (n = 100) and caregivers (n = 48) were interviewed. In depth interviews generated data covering patient’s perspectives about healthcare facilities, views on quality of care received, perception related to direct and indirect costs of care and overall impact of cancer on the broader lives. Major themes emerging were related to a) journey of patients to access care, b) psychological trajectory of patients, c) stigma d) decision making and adherence to treatment, e) economic costs and its impact and f) modifiers to accessing cancer care. Barriers and enablers of access to cancer care were identified. Conclusions: Planning and policymaking in the future of cancer care delivery need to consider the views expressed by the cancer patients and their caregivers as regards to access, adherence and disruptions to cancer care in India. Future policies will hopefully address some of the difficulties faced by patients.