Dealing with an uncertain future: a survey study on what patients with chronic kidney disease actually want to know

Background Prognostic uncertainty is a recurring theme among patients with chronic kidney disease (CKD). We developed a survey to explore whether CKD patients want to know more about their future, and if so, which topics they prioritize. In addition, we explored differences between several subgroups. Methods A survey was constructed and tested in collaboration with the Dutch Kidney Patients Association. The survey consisted of three parts: 1) demographics, 2) considerations about the future, and 3) prognostic information. The survey was distributed amongst CKD patients (all stages) through patient associations and via healthcare professionals in two Dutch hospitals. Descriptive statistics were used to summarize the results. All results were stratified by population, sex and age. Results A total of 163 patients (45 CKD, 26 dialysis and 92 kidney transplantation) participated in the survey. The mean age was 63.9 (SD 12.0) and 48.5% was male. Most patients think about their future with CKD occasionally (56.4%) or often (35.0%). Nearly half of the patients (49.7%) discuss the future with their nephrologist, some (19.6%) do not but would like to, and 20 (15.3%) prefer not to. Most patients (73.6%) want more prognostic information, regardless of it being positive or negative. Key topics to receive prognostic information about were laboratory values, symptoms, and physical well-being. Dialysis patients prioritized mental over physical well-being. CKD patients without KRT indicated thinking about, and discussing their future more regularly than KRT patients. Conclusions Patients with CKD contemplate their future regularly and express interest in receiving prognostic information on a variety of topics. One in five patients currently do not discuss their future with CKD with their nephrologist, despite wanting to do so. These findings underline the need to tailor prognostic information provision to patients’ preferences, advocating more attention to this subject both in research and clinical practice.