Self-referral of Chinese patients with advanced chronic kidney disease and treatment decision-making: A qualitative study

Abstract Background: Chinese patients with advanced chronic kidney disease, especially rural patients possibly occur self-referral behavior and then treatment decisions followed. It is unclear the relationship between self-referral and treatment decision-making. Thus, the aim of this study was to explore HCPs and patient with advanced CKD perceptions of self-referral and treatment decision making. Methods: We conducted semi-structured interviews with 22 patients with advanced kidney disease and 8 health care professionals. Interviews were conducted and analyzed thematically until reaching thematic saturation. Results: We identified three themes reflected: 1) self-referral decision making (self-referral motive, barrier to self-referral, seeking for self-referral information); 2) the views and experience of self-referral care (facilitating shared decision making, imposing psychological pressure, feeling about self-referral communication, challenge to staff-patient relationship); 3) treatment decision making (decisional awareness and roles, cost-benefit trade-off and redicision). Conclusions: Our study identified that organizational and demographic factors, self-referral motives worked together at the self-referral decision-making and treatment decision-making when advanced CKD patients facing with healthcare facilities and treatment options. Those findings suggest stakeholders should accelerate the popularization of peritoneal dialysis technology and establish the CKD screening and management systems. For self-referral patients with advanced CKD, our results suggest specialized dialysis transition care to improve quality of communication and soothe patients’ negative emotion.