QUALYCARE

Name and title

QUALYCARE KIDNEY study: for better care at the end of life

Recruitment status

Open

Chief investigator

Dr Emma Murphy

Sponsor

University Hospitals Coventry & Warwickshire NHS Trust

Funder

Health Education England (HEE) National Institute for Health Service Research (NIHR) Integrated Clinical Academic Clinical Lectureship

Aim

The overall aim of this study is to examine variations in the care, costs, preferences and outcomes for patients and families in relation to how people with chronic kidney disease stage 5 on dialysis die – whether the death is preceded by a decision to withdraw from dialysis (dialysis withdrawal) or a death on dialysis not preceded by a decision to withdraw dialysis (non-withdrawal).

Study design

A retrospective cohort study of deaths following dialysis withdrawal vs. non-withdrawal using a mortality follow-back survey with bereaved relatives of deceased dialysis patients.

Speciality

Renal, Palliative Care, Supportive Care

Sample size

400

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.

Evidence suggests people who withdraw from dialysis generally survive for one to two weeks. However, there is little research into what drives people to make the decision to stop dialysis and equally why some patients do not withdraw from dialysis resulting in death on dialysis.

QUALYCARE Kidney has been designed to explore the views of family members and to compare what patients and families prefer with what they actually experience. The study aims to examine variations in the care, costs, preferences and outcomes associated with a dialysis withdrawal death or death on dialysis (non-withdrawal).

The trial aims to survey 400 bereaved relatives of dialysis patients who died in the last 4-14 months over 14 UK NHS sites. A robust and validated questionnaire will be used to assess bereaved relatives’ views on the care received in the three months before their relative died. This questionnaire 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.

Finding out the views of bereaved relatives is important for two main reasons. Firstly, because this is the only way to get a population-based perspective on end-of-life care. Secondly, relatives are often carers but also recipients of end of life care; surveying bereaved relatives allows us to understand how well they cope with their loss and grief.

By analysing the views of families and friends on the care their deceased relative received, researchers may be able to work out why some people received care which met their needs and preferences, while others did not. The information collected will be used to improve future care for dialysis patients and their families.