Ideal in principle, limited in practice: Shared decision-making in Chronic Kidney Disease Care in Urban South India

Abstract Objective To examine the illness trajectory and decision-making among people with CKD, and to explore the scope of Shared Decision-Making (SDM) in an urban Indian context. Setting: The study was conducted in Bangalore, the capital city of Karnataka state, in Southern India. Participants: A total of 12 individuals diagnosed with kidney failure, and 6 family members from private and Government run dialysis centres participated in the study. Design and methods: Prospective qualitative research design to follow-up individuals who had been diagnosed with kidney failure. The participants were recruited from August to December 2021 and were followed up until April 2023. The data was collected through in-depth interviews and thematic analysis was conducted. Results We found that clinicians played a dominant role in decision-making, particularly in selecting the treatment modality – offering hemodialysis as the only lifesaving treatment. The key decisions encountered by people with kidney failure were regarding (a) the treatment modality soon after the diagnosis, (b) treatment setting/centres, and (c) other day-to-day decisions, such as diet, employment, living arrangements and long-term care planning. There was a lower level of awareness and uptake of peritoneal dialysis and kidney transplant. Financial implications and peer pressure emerged as the most important factors influencing patients’ decisions regarding the treatment modality and specific dialysis setting and centre. Conclusion Our findings indicate that current CKD care in India predominantly follows a traditional physician-centred approach. Improving patient education and actively involving patients in decisions about available treatment options is essential, considering their unique circumstances related to CKD. It is crucial to adapt the existing shared decision-making frameworks to incorporate key elements such as financial implications and peer support, as these significantly impact decision-making, especially in low- and middle-income (LMIC) settings. Trial registration Not applicable since the study is not a clinical trial