QUALYCARE KIDNEY study - For better care at the end of life
Research type
Research Study
Full title
Variations in the quality and costs of end of life care, preferences and palliative outcomes for chronic kidney disease stage 5 dialysis patients: the QUALYCARE KIDNEY study
IRAS ID
207532
Contact name
Emma Murphy
Contact email
Sponsor organisation
University Hospitals Coventry & Warwickshire NHS Trust
Duration of Study in the UK
3 years, 6 months, 18 days
Research summary
Dialysis is an invasive treatment, and, for some patients it may bring burden without corresponding benefit, neither increasing survival nor improving quality of life. Some patients reach a stage when they consider that dialysis can no longer provide them with any benefit and they may choose to stop dialysis. Sometimes, the medical team may advise that dialysis treatment is no longer beneficial and should end.
We do know that people who withdraw from dialysis generally survive for one to two weeks. However, we do not know what drives the person to make the decision to stop, equally we do not know why some patients do not withdraw and die whilst on dialysis.
We wish to explore this from the views of family members and to compare what patients and families prefer with what they actually experience. Our study aims to examine variations in the care, costs, preferences and outcomes associated with a dialysis withdrawal death or death on dialysis (non-withdrawal).
We plan to survey 400 bereaved relatives of dialysis patients who died in 14 UK renal units. The clinical teams identify potential participants and invite them, via post and on our behalf, to participate in the survey. Letters will be sent 4 to 14 months after the patients died. Participation will involve self-completing a postal questionnaire.
We will use a robust and validated questionnaire to assess bereaved relatives’ views on the care received in the three months before their relative died. This has previously been used in a large UK study of bereaved relatives of people who died from cancer. The study will advance the understanding of the costs and the consequences (i.e. outcomes to patients and families) of dying following dialysis withdrawal and non-withdrawal. It will help improve future care for dialysis patients and their families.
REC name
London - Camberwell St Giles Research Ethics Committee
REC reference
19/LO/1246
Date of REC Opinion
30 Jul 2019
REC opinion
Favourable Opinion