“I’d love it if someone gave me answers” - exploration of patients’ and health care professionals’ perspectives of chronic kidney disease and kidney failure risk in the context of multimorbidity and frailty: a qualitative interview and focus group study

Clinical guidelines recommend the use of the Kidney Failure Risk Equation (KFRE) to guide referral of individuals with chronic kidney disease (CKD) to secondary kidney care services. People living with CKD frequently experience multiple long-term conditions (multimorbidity) and/or frailty. This may impact patients’ or healthcare professionals’(HCPs) perceptions of kidney failure in the context of other health problems and associated risks and emphasises the need for shared decision-making. This study aims to explore patients’ and HCPs’ perspectives on understanding CKD and kidney failure risk, including the use of the KFRE, in the context of multimorbidity and/or frailty.

A qualitative study using semi-structured interviews with patients and focus groups or interviews for HCPs from primary and secondary care settings in NHS Greater Glasgow and Clyde was conducted March 2024-July 2025. Patients aged ≥18 years old with CKD and ≥2 long-term conditions and/or frailty, and HCPs involved in caring for these groups of patients, were purposively sampled to ensure variation in demographics and socioeconomic status. An interview topic guide was developed based on the research question, the Ottawa Decision Support Framework and the Ottawa Personal Decision Guide. Data were collected until saturation and analysed using framework analysis informed by Normalisation Process Theory.

Nineteen patient participants from primary care settings and twelve from a secondary care setting were interviewed. Seven HCPs from primary care settings and twelve from secondary care settings participated in focus groups or interview. Patient participants were 48% female, aged between 46-94 years old, reported living with 3-10 long-term health conditions, had a clinical frailty scale of 1-7 and represented a range of socioeconomic backgrounds. Five key factors were found to influence understanding and perception of CKD and kidney failure risk: 1) Patients variable knowledge and understanding of CKD, with many unaware of their diagnosis; 2) The work required to live with CKD alongside other long-term conditions and/or frailty, including healthcare associated work relating to complexity and uncertainty; 3) Relationships and interactions between individuals, healthcare professionals, the healthcare system and support networks, where trust and continuity facilitated shared decision-making; 4) Context and priorities, including prioritisation of CKD by patients and healthcare professionals; and 5) Uncertainty, encompassing prognosis, attribution of symptoms, the role of KFRE and consideration of death (Figure 1).

Many individuals were unaware of having a diagnosis of CKD and wanted to better understand CKD and kidney failure risk alongside other long-term health problems. Relationships and interactions between individuals, HCPs, healthcare systems and support networks are important, complex and vary by individual contexts/priorities. However, fostering trusting relationships, continuity and recognition of individual priorities were key to supporting shared decision-making. The potential role of KFRE was highlighted but the challenges of communicating risk and uncertainty require further research. Findings provide insights to how an understanding of CKD and kidney failure risk can be embedded in the care of individuals with multimorbidity or frailty. Findings will inform care planning, healthcare systems and shared decision-making discussions about CKD and kidney failure in individuals with multimorbidity or frailty.

Figure 1: Key factors influencing understanding and perception of chronic kidney disease and kidney failure risk in the context of multimorbidity and frailty.