What is already known about this topic and why is it important?
The symptom burden in people with chronic kidney disease (CKD) is high across CKD stages, which negatively affects their quality of life. In most cases, people suffer from multiple symptoms at the same time, such as fatigue, sleep disturbance, pain and itch. Treatment strategies that address clusters of coinciding symptoms may therefore be more effective in improving quality of life than those focusing on single symptoms. However, evidence to inform such strategies is currently scarce.
How will you carry out your study?
Transforming Participation in Chronic Kidney Disease (TP-CKD) was a project that aimed to support people with CKD to become more involved in their own care. As part of the project, renal units collected patient-reported data using the Your Health survey. The Your Health survey combined three questionnaires to capture information on people’s:
- Symptoms (POS-S Renal questionnaire)
- Health-related quality of life (EQ-5D-5L)
- Knowledge, skills and confidence to be involved in their own care (Patient Activation Measure).
For this study, we will retrospectively analyse responses to the Your Health survey that are currently available in the UK Renal Registry, with a focus on symptoms and quality of life.
How will you decide which patients are included in your study?
All people who have completed at least one Your Health survey will be eligible for inclusion in our analyses.
How many patients do you anticipate including?
3,325, of whom 842 completed the Your Health Survey on more than one occasion.
For how long will you follow up these patients?
The majority of patients only completed one Your Health survey; they will not be followed up. For the 842 patients who completed more than one survey, follow-up will be determined by time between their first and last Your Health survey.
What new information will your study generate and how will this benefit patients?
This will be the largest cohort study to date to investigate symptom burden in CKD patients across disease stages and treatment modalities. It will provide a robust external validation of symptom clusters and their association with quality of life across CKD modalities as previously identified by smaller, non-UK studies in (mostly) dialysis patients.
The study findings will also inform how symptom data can best be presented to patients (e.g. in PatientView) and their renal teams (in the electronic health record) to aid interpretation and decision making. For example, by generating a notification if the symptom burden crosses a certain ‘tipping point’. Ultimately, this will contribute to improving symptom management and quality of life.