Treatment Decision‐Making in Patients With End‐Stage Renal Disease in China: A Patient Journey Map Based on Qualitative Research
Xiaohui Liu, Sirui Wang, Jianhua Zhang, Lijuan Liu, Nan Wang, Jingyu Wang, Wei HanABSTRACT
Background
Patients with end‐stage renal disease (ESRD) often face complex decisions regarding renal replacement therapy. Although previous studies have extensively explored factors influencing treatment choices, the treatment decision‐making process and patients' experiences remain poorly understood.
Aim
The study aimed to explore treatment decision‐making in patients with end‐stage renal disease to inform the development of a patient journey map.
Design
A descriptive qualitative study was conducted.
Methods
Purposive sampling with maximum variation was used to recruit 14 patients with end‐stage renal disease to participate in face‐to‐face semi‐structured interviews. Data were analysed using an inductive approach. Based on the interview data, a patient journey map was developed and refined through iterative team discussions.
Results
Patients with end‐stage renal disease experienced a treatment trajectory consisting of three stages: screening and diagnosis, renal replacement therapy decision‐making, and ongoing treatment. Four dimensions—tasks, touchpoints, emotions, and pain points—were used to identify 19 themes, reflecting patients' behavioural patterns, emotional experiences, and key challenges across different stages. Patients commonly experienced limited access to information, insufficient support systems, and inadequate decision readiness during the treatment decision‐making process. Most participants experienced decisional conflict and relied primarily on healthcare professionals to make decisions. As treatment progressed, patients' adaptability improved, but difficulties in complication management and insufficient informational needs remained.
Conclusion
The developed patient journey map demonstrates the cognitive, emotional, and behavioural patterns involved in clinical treatment decision‐making among patients with end‐stage renal disease and provides a framework for clinical practice to address patient needs more effectively.
Patient or Public Contribution
Patients participated as interviewees during data collection. No patients or members of the public were involved in the study design, data analysis, or interpretation of the findings.
What Does This Paper Contribute to the Wider Global Clinical Community?
This study provides insight into the treatment decision‐making experiences of patients with end‐stage renal disease. The findings provide a framework for healthcare professionals to guide stage‐specific interventions, decision‐making, and patient engagement in renal replacement therapy.
Reporting Guideline
Standards for Reporting Qualitative Research (SRQR).