Danish Cohort for Patients Over 75 Years of Age With Chronic Kidney Disease Stage Five Who Are on Dialysis Treatment or on a Conservative Kidney Management Pathway

Background In chronic kidney disease stage five, patients must decide whether they want to start treatment with dialysis or a conservative kidney management pathway (CKM). It is a major decision for patients and their relatives, which concerns survival, quality of life, symptom burden and time spent in hospital. Patients with chronic kidney disease stage five have a high symptom burden, regardless of whether they are treated with dialysis or on CKM pathway. Systematic observation and recording of the symptoms should take place and alleviated to the extent possible. The patients experience a number of different symptoms including fatigue, nausea, dyspnoea, reduced level of physical function, pain and restlessness in the legs. A systematic review based on 25 primary studies found that there is an increased mortality in patients on an CKM pathway compared to patients on dialysis. But at the same time, benefits are seen in relation to increased quality of life, reduced symptom burden and fewer hospitalizations if the patient is on CKM pathway. Another study reports that patients in dialysis treatment have a higher symptom burden, lower well-being and poorer quality of life than patients who have opted out of dialysis.

In Denmark, symptoms experienced by patients with chronic kidney disease stage five are not systematically recorded, as there has not previously been a tool to collect Patient Reported Outcomes . The Integrated Palliative Outcome Scale Renal (IPOS-Renal) for patients with chronic kidney disease stage five is a validated screening tool to systematically investigate which symptoms patients with chronic kidney disease stage five report. Routinely collecting data about the patient's symptoms is the first step to improve care and treatment for patients with stage five chronic kidney disease. The validation and translation of the Danish IPOS-Renal was carried out in 2019-2020 by principal investigator. The implementation of IPOS-Renal can help to provide an increased focus on symptom management and quality of life among patients with chronic kidney disease stage five. IPOS-Renal gives patients the opportunity to be further involved in their disease and health, as the patients themselves have the opportunity to complete the questionnaire. IPOS-Renal takes less than 10 minutes to complete. IPOS-Renal contains a total of 11 questions concerning the most common physical symptoms for patients with chronic kidney failure. In addition, IPOS-Renal also contains questions about the patient's mental and existential needs, social needs and practical needs.

Purpose The purpose of the current study is to investigate whether there is a correlation between patients >75 years of age with chronic kidney disease stage five in treatment with - dialysis or on a CKM pathway and their symptom burden measured with the IPOS-Renal score. In addition, it is investigated whether there is a correlation between patients >75 years of age with chronic kidney disease stage five in treatment with - dialysis or on a CKM pathway and their mortality.

Hypotheses I. Patients on a CKM pathway have greater improvement in their symptom burden measured with IPOS-Renal than patients in dialysis treatment. II. Patients in dialysis treatment have a lower mortality rate than patients on a CKM pathway.

Materials and methods The project will be carried out as an observational prospective cohort study of patients with chronic kidney disease stage five in dialysis treatment or on a CKM pathway. Data originate from patients from 11 hospitals in Denmark: Aalborg University Hospital, Regionshospitalet Gødstrup, Sydvestjysk Sygehus, Kolding Hospital, Gegehus Sønderjylland Sønderborg, Rigshospitalet, Sjællands University Hospital Roskilde, Nykøbing Falster Hospital, Herlev Hospital, North Zealand Hospital and Aarhus University Hospital. In the current study, baseline information is defined at the patient's first response to the questionnaire. After that, the questionnaire is answered every 6 months for two years or until death.