#4188 preferences for prognostic information provision amongst patients with chronic kidney disease: a survey

Abstract Background and Aims Patients with chronic kidney disease (CKD) often experience various symptoms and have an increased risk for many adverse outcomes. The varying nature of the course of the disease comes with much prognostic uncertainty, and patients have expressed a wish for more information about their future with the disease. However, the extent to which patients want to know more about their future with CKD varies highly per individual. By identifying which topics patients are interested in regarding their prognosis, more attention can be given to these topics in clinical practice and future research. Therefore, the aim of this study was to explore whether CKD patients want to know more about their future, and if so, which topics they find most important in regards to their prognosis. Method To gather information on what CKD patients want to know regarding their future, a survey was constructed by an expert panel of researchers and nephrologists. Before distributing the survey, it was tested during a two-phase pilot, in which volunteers of the Dutch patients association provided detailed feedback. Feedback was incorporated into a final version, available both on paper and online in Castor EDC. The survey was developed in Dutch, and was fully anonymous. The final survey consisted of three main sections containing multiple questions: 1) demographic questions, 2) ‘do you think about your future with a kidney disease?’, 3) ‘what would you want to know about your future with CKD?’. The survey was specifically developed for all patients that currently have chronic kidney disease, including patients undergoing any form of dialysis or those that have received a kidney transplant in the past. Descriptive statistics were used to summarize the results. Results A total of 145 patients filled in the survey. Respondents had a mean age of 63.0 (SD 14.1) and 49.7% was male. The majority of patients (57.9%) had undergone a kidney transplant in the past and 23 (15.9%) patients were undergoing dialysis at the time of responding. When asked whether patients ever thought about their future with CKD, most replied that they think about it every now and then (57.2%) or often (36.6%), and only nine (6.2%) patients reported that they never think about it. Half of the patients (50.3%) reported that they discuss the future with their nephrologist. Some patients (19.3%) mentioned that they currently do not discuss it, but would like to, and 23 (15.9%) patients stated that they do not want to discuss their future at all. Furthermore, patients were asked in which scenarios they would be interested in knowing more about their future. Most patients (77.9%) mentioned they always wanted to know more about their future, regardless of whether the information is positive or negative. Contrarily, two patients (1.4%) only wanted to know in case of good news, 32 (22.1%) when the outcomes in question can be prevented, and 37 (25.5%) if it would help them make a treatment decision. Four patients (2.8%) were not sure whether they wanted more prognostic information and four patients (2.8%) preferred not to know anything in terms of prognosis at all. Patients were asked to rate the importance of receiving more prognostic information for nine outcome categories on a scale from 0 to 100. Outcome categories that were rated the highest were laboratory measurements, health complaints, and physical well-being. Per category, patients chose specific subjects that they deemed important in terms of prognosis. The top ten most chosen subjects per patient group (CKD, dialysis, kidney transplantation, and all patients) are presented in Figure 1. Conclusion Most patients with chronic kidney disease think about their future, and there is interest in receiving individualised prognostic information on what to expect for a variety of subjects. Based on these research results more attention can be paid to specific prognostic information provision tailored to the preferences of and based on subjects that matter to patients, both in future research and clinical practice.