Navigating the future with chronic kidney disease: towards patient-centred prognostic modelling

Abstract

This thesis set out to improve patient-centred prognostic information provision in nephrological patient care. Using a combination of quantitative and qualitative research methods, we explored CKD patients’ perspectives regarding their future, the prognostic topics they prioritise, and which prognostic questions they have. Furthermore, in a scoping review, we mapped out the current field of prognostic modelling in nephrology, identifying key knowledge gaps and ways to potentially bridge the gap between prognostic research and the implementation of prognostic models in clinical practice. Additionally, we evaluated the role of patient-reported outcomes (PROs) as predictors of mortality in dialysis patients, demonstrating their potential in improving nephrological prognostic models. Finally, we discuss the clinical implications of our work, and provide directions for future research on prognostic information provision and patient-centred prognostic modelling in nephrology.