Development of a self-management behaviour scale for people with CKD
Research type
Research Study
Full title
Development of a self-management behaviour scale for people with Chronic Kidney Disease (CKD) on haemodialysis in the UK
IRAS ID
221766
Contact name
Ken Farrington
Contact email
Sponsor organisation
East and North Hertfordshire NHS Trust
Duration of Study in the UK
1 years, 5 months, 28 days
Research summary
Broadly, patients do better when they are involved in their healthcare, over and above doing what they are told. This is ‘self-management’. In kidney disease self-management tends to focus on whether patients follow their dialysis regimes (having their blood cleaned outside of their body), limit their food and drink and take medicines. However, self-management research shows that important actions are not just medical, they include things that patients do to keep themselves well socially and emotionally. There is no way of measuring this for patients with CKD on dialysis in the UK.
We would like to develop a questionnaire that measures everything patients are doing to self-manage, to identify where they may need support, looking at this more widely than just kidney care support.
Our plan is to (1) work with patients to decide what subjects the questionnaire should cover (2) turn these, and subjects which research has shown to be important, into our questionnaire with the help of some medical and research experts (3) have patients check the questionnaire makes sense, and then (4) have approximately 600 patients complete it so we can validate the questionnaire (make sure it is strong, scientifically).
REC name
East Midlands - Leicester South Research Ethics Committee
REC reference
17/EM/0451
Date of REC Opinion
1 Dec 2017
REC opinion
Favourable Opinion