"I'd Love It If Someone Gave Me Answers": Exploration of Patients' Perceptions of CKD and Kidney Failure Risk in the Context of Multimorbidity and Frailty

Background: People living with chronic kidney disease (CKD) frequently experience multiple long-term conditions (multimorbidity) and/or frailty. Currently, this population is under researched and shared decision making about CKD treatment and kidney failure can be challenging. This study aims to explore patients’ knowledge of CKD/kidney failure, communication from healthcare professionals (HCPs) and perceptions of kidney failure risk. Methods: Semi-structured interviews with purposively sampled patients with a diagnosis of CKD and multimorbidity and/or frailty from primary and secondary care settings in the United Kingdom were conducted March-December 2024. An interview topic guide was developed based on the research questions, the Ottawa Decision Support Framework and the Ottawa Personal Decision Guide. Data were analysed by framework analysis, underpinned by Normalisation Process Theory (using Nvivo 14). Double coding and use of COREQ guidelines enhanced rigour. Results: Thirty-one participants, 46-94 years (mean 74), 52% male, 3-10 long-term conditions, clinical frailty scale 1-7, were interviewed. Five factors were found that influence the experience of understanding, perception and communication of risk: 1) Individuals knowledge and understanding of CKD and kidney failure; 2) The work required to live with CKD alongside multimorbidity and/or frailty; 3) Relationships and interactions with HCPs, the healthcare system and their support networks; 4) An individual’s context and priorities and 5) Uncertainty of health conditions/functional status and consideration of death. Conclusion: Many individuals were unaware of having a diagnosis of CKD and wanted to better understand CKD and kidney failure risk alongside other chronic health problems. Relationships and interactions between individuals, HCPs, healthcare systems and support networks are important, complex and vary by individual context/priorities. Findings aid knowledge of 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 for important shared decision-making discussions about CKD and kidney failure in this group. Funding: Private Foundation Support