Development of a treatment burden measure for AKD
Research type
Research Study
Full title
Development and validation of a measure of treatment burden for people with advanced kidney disease (AKD).
IRAS ID
336417
Contact name
David Wellsted
Contact email
Sponsor organisation
University of Hertfordshire
Duration of Study in the UK
2 years, 1 months, 31 days
Research summary
Treatment for advanced kidney disease (AKD) can be extremely demanding and disruptive to the lives of people with AKD and their families. People with AKD have to take lots of medication and experience restrictions to their diet and fluid intake. Many people with AKD receive in-centre haemodialysis and have to travel for dialysis session three-times a week. People receiving home haemodialysis or peritoneal dialysis have the challenge of managing their own care and exchanges. All of these factors, and more, can impact a person’s ability to work, socialise and spend time with their family. Despite this, treatment burden is largely under-investigated in this group of people and there are no questionnaires that capture all of the issues that matter to people with AKD.
The aim of this study is to create a questionnaire that will measure the challenges associated with treatment for AKD. The questionnaire could help people with AKD to make decisions about the type of treatment they would like to receive, make changes to how they currently receive treatment, and get support for the parts of treatment they find challenging. The questionnaire could also help researchers to test and compare different treatments and types of support.
This study will involve three main stages. In stage 1, people with AKD will be invited to share their experiences of treatment in one-to-one interviews. This will help the researchers to make list of challenges and turn them into questions for the questionnaire. In stage 2, the questions will be examined by patients and healthcare professionals to check that the questions are important and make sense. Finally, in stage 3, the questionnaire will given to a large group of people with AKD and will be tested by the researchers to make sure that the questionnaire is scientifically strong.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
24/YH/0111
Date of REC Opinion
23 Jul 2024
REC opinion
Further Information Favourable Opinion