End-stage kidney disease: towards shared decision-making and patient-reported outcomes

Abstract

Over 12% of the Dutch population has chronic kidney disease. As chronic kidney disease progresses toward end-stage kidney disease, patients receive education on treatment options (kidney transplantation, dialysis, conservative care), with an increased focus on shared decision-making in recent years. This education process may lead to the choice of a form of dialysis, namely hemodialysis (dialysis through the bloodstream) or peritoneal dialysis (abdominal dialysis). Many studies have been done in the past on the risk of morbidity/mortality of dialysis patients, but there is increasing demand for studies on patient-reported outcomes, such as health-related quality of life. The aim of this thesis is to gain insights in (1) patient education and shared decision-making, (2) traditional clinical outcomes of dialysis such as bleeding, hospitalization, technique failure and peritoneal dialysis peritonitis, and (3) an important patient-reported outcome; health-related quality of life. Part I of this thesis shows that the commitment of healthcare professionals and availability of effective systems, that incorporate good practices, are vital for optimal patient education and shared decision-making. Part II shows that that the occurrence of certain ‘traditional’ clinical outcomes differs between dialysis modalities, with a higher bleeding risk for hemodialysis patients but a higher hospitalization risk for peritoneal dialysis patients, mainly related to infections. Moreover, peritoneal dialysis-related infections lead to a high technique failure rate, which calls for more attention to infection prevention or a different approach to the treatment of specific peritoneal dialysis-related infections. Part III shows that health-related quality of life is an important patient-reported outcome, but the effect of different dialysis modalities on health-related quality of life is not yet clear. In summary, this thesis shows a shifts toward shared decision-making and the importance of patient-reported outcomes for patients with end-stage kidney disease.