The UNPACK study: Understanding treatment preferences of older Patients and their families deciding between dialysis and comprehensive conservative Care for Kidney failure
Description: Every day in the UK ten people older than 65 develop kidney failure. They must choose what treatment to have. A kidney transplant is desirable, but older people are usually too unwell to receive one. People who cannot get a transplant must choose between dialysis and non-dialysis 'comprehensive conservative care' (CCC). Dialysis can prolong life, but this is not guaranteed for people with major health problems. Treatment is exhausting and requires big lifestyle changes. Aspects such as travelling for dialysis are particularly hard for older people. People who choose CCC are more able to continue with their usual routine. They spend less of their remaining lives in hospital and tend to die 'better' deaths. There is a need to make dialysis and CCC more suitable for older people and improve how we help patients decide between them. Little research is available regarding what older patients with kidney disease want and what is important to them. We know they experience uncertainty when making up their minds. They can feel pressurised to start dialysis and those receiving it can regret starting. The 'right' treatment depends upon what is most important to an individual. Family members are often involved in decisions, but their preferences do not necessarily match those of their loved ones. Some patients who receive dialysis may find CCC more fitting. The UNPACK study will improve our understanding of older peoples' preferences when deciding between dialysis and CCC. This will help to identify the aspects of dialysis and CCC that influence which treatment they choose. With this information, services could be improved, including: Adapting dialysis/CCC programmes to be more suitable for older people Making information resources more appropriate for older people who cannot get a transplant Helping doctors and family members make better decisions for people too unwell to decide for themselves The study involves a 'choice experiment'. Some people choose CCC because they don't want intrusive treatment and are willing to live shorter lives to avoid it. Choice experiments can be used to measure such 'trade-offs'. Participants choose between treatments in a series of questions. Their responses are used to determine the importance of treatment aspects and how willing people are to trade them. For example, how many days in hospital patients will accept in order to extend their life by one year. Only one choice experiment has assessed trade-offs in this setting. Patients were willing to trade fifteen months of life to make holidaying easier. Relatives were less willing to trade-away life expectancy. The study took place in Australia and included young, fit people. Life expectancy, treatment options and the cultural setting are different for older UK patients, so these findings cannot be generalised to them. The UNPACK study will investigate the trade-offs these older UK patients are willing to make. Design and methods The UNPACK study includes three work packages. Work package A - Literature review I will search the literature for treatment aspects known to affect decision-making. Findings will be used to inform questions for the interviews in work package B. Work package B - Interview study I will interview up to 30 older patients with kidney disease and people close to them. Patients will be over 65 and have less than 20% kidney function. Family members will be related or unrelated close people. I will analyse the interviews for treatment aspects that affect choices. I will use these to develop the questions for the choice experiment. Work package C - Choice experiment I will recruit patients and family members from five UK sites to participate in the choice experiment. As with work package B, patients will be over 65 and have less than 20% kidney function. Family members will be related or unrelated close people. 125 patients and 125 family members will be enlisted. Trade-offs made by patients and family members will be compared. I will look for factors such as age that affect treatment preferences. Patient and public involvement Twelve older patients and relatives were recruited to help with study-development. Four patient/family representatives volunteered to meet regularly to oversee the study and to review/edit patient-facing materials. A focus group of patients will be held to assist with analysis of work package B interviews. Patient co-authors will be sought to write a patient-facing publication of study findings. Dissemination I will share study findings with: Participants Patient representatives The British Kidney Patient Association Journals/conferences Patient-facing publications Twitter @UNPACKstudy @BarnyHole with 1.3k followers including: Patients GPs Kidney doctors/nurses Journalists Policy-makers
Amount: £343,900
Funding type: fellowship
Funder scheme: NIHR Fellowships
Start date: 2017-11-01
End date: 2022-11-30
Investigator: Barnaby Hole (lead)
Institution: University of Bristol
Field: Medicine
Domain: Health Sciences
Funded outputs count: 17
Funder award ID: DRF-2017-10-127
OpenAlex ID: G3051336158