Understanding the Low Take-Up of Home-Based Dialysis Through Shared Decision-Making: A Qualitative Study

Abstract Background Despite home dialysis having many advantages, take-up by people with established renal failure is low in many countries. Previous studies highlight complex social, psychological, economic and health-system obstacles to patients choosing home dialysis. The study explored how people who are pre-dialysis, caregivers and health professionals together navigate common shared decision-making processes, and assesses how this impacts on choice of dialysis, conservative treatment or transplant. Methods This qualitative study took place in Wales, a country within the United Kingdom with a publicly-funded healthcare system. From 5 renal centres, education literature used in patient education was collected and content analysis applied. The theoretical framework was the MAGIC shared decision-model. From February 2019 until data saturation was reached in January 2020, semi-structured interviews with a purposive sample of 51 patients, 41 caregivers and 49 renal professionals were undertaken. Interview data were analysed using framework analysis. Patient and public representatives were involved throughout. Results Thematic findings are presented as: Prior knowledge, choice talk, options talk, decision talk. Gaps were found in both knowledge and understanding at every stage of the decision-making process and amongst all involved. Patients and caregivers came with varying levels of prior knowledge and understanding, which can result in misinformation and biases that contaminate the shared decision-making process. This is not always recognised by renal professionals. Presentation of treatment options through education programmes was often found to be inadequate, biased or poorly understood. Such deficiencies create partialities towards some treatments and, in particular, mitigate against the take-up of home therapies, even when they may be the most appropriate. A logic model and a road map to further evolving clinical practice was developed. Conclusions There are critical points in the process at where change could benefit patients. Patients need to be better prepared and their preconceived ideas and misconceptions gently challenged. Healthcare professionals need to update their knowledge in order to provide the best advice and guidance. Shared decision-making processes need to be individually-tailored so that there is more attention paid to the benefits of home based options, and on people who could chose a home therapy but select a different option.