Aim of the study

The Illness-Related Distress Scale is a newly developed questionnaire to assess distress in people living with a long-term condition. The aim of this project is to evaluate this scale in people with CKD.

Study type

Online Survey: https://qualtrics.kcl.ac.uk/jfe/form/SV_a4TK34zX8do7xIO

Who is able to participate?

People 18 years of age or older, living with any stage of CKD in the UK.

Where is the study happening?

Online.

Open and close dates of recruitment

24th November 2025 - 30th April 2026.

How do I get involved?

Click the survey link: https://qualtrics.kcl.ac.uk/jfe/form/SV_a4TK34zX8do7xIO

Summary

People with chronic kidney disease (CKD) often face higher levels of depression and anxiety compared to people without CKD. Although several questionnaires have been used to measure depression and anxiety, they are not able to separate the distress caused by living with CKD from the primary symptoms of a mental health condition. Understanding illness-related distress might help better inform interventions designed to support adjustment and well-being in people living with CKD.

The 14-item Illness-Related Distress Scale is a newly developed questionnaire to assess distress in people living with a long-term condition. However, it has not been fully evaluated in people with CKD.

The purpose of this project is to evaluate this scale in people with CKD. We would like to know how reliable the tool is at capturing distress and how it compares to similar mental health tools that measure symptoms of depression and anxiety. Finally, we would like to know which factors are associated with higher levels of illness-related distress. This includes factors related to CKD (for example whether you are on dialysis or not), and psychological factors including how people think and respond to symptoms associated with CKD.

Has this study received ethical approval?

HR-25/26-52813

Lead investigators

Prof Joseph Chilcot