The ProsPECT Study
Research type
Research Study
Full title
The ProsPECT Study: Prospective Planning for Escalation of Care and Treatment
IRAS ID
285937
Contact name
Helen Ward
Contact email
Duration of Study in the UK
1 years, 4 months, 14 days
Research summary
Summary of Research
The Problem:
People are now living longer, but many are frail or have long-term health conditions. This group of people are more likely to have an acute health event. Acute health events are those in which you may be so unwell that you require an emergency admission to a hospital or the intensive care unit (ICU). The benefits of admission to hospital or the ICU for this group of people is not always clear. They may find hospital or ICU treatment burdensome. They may also find it difficult to get back to their previous level of function following a hospital admission. People living with frailty and long-term health conditions are rarely asked what they would want when faced with an acute health event. This means that people are not given the chance to think about and discuss what kind of care they would want in the future if they became unwell.
The Study:
We want to help people living with long-term conditions and frailty to make decisions about how they would want to be cared for if they became unwell. In Phase One of this project, we will be holding interviews and focus groups (group discussions) with people living with long-term conditions, their families and healthcare professionals. We are particularly interested in how people make decisions related to acute health events. We want to know what information and materials might support this process.
Phase Two of this project will be a series of co-design workshops. This means the researchers will be working together with people living with long-term conditions, their families and healthcare professionals. We will develop information materials based on what we have learnt from the first phase of the study. We hope that the materials that we develop will support people to make these important decisions.Summary of Results
Our study explored how older people living with frailty made decisions about their healthcare, in particular, about the treatment they would want if they became very unwell (an acute health event). We also studied the part families and healthcare professionals played in healthcare decisions made for frail older people.
In Phase One we held interviews with 30 people- nine patients, 11 carers and ten health care professionals and focus groups (group discussions) with 14 health care professionals.
We learned that frailty is often hard to recognise, feels negative and may not be openly discussed. People told us that making plans for an acute health event is complex, and that a lack of shared understanding of frailty, as well as uncertainty about what the future holds, makes decision-making difficult. We heard that older people living with frailty often want their families or clinicians to make decisions for them, but we found that they might have different priorities- with decisions made by carers focusing on survival, and those made by clinicians focusing on avoiding risk.
We found that making plans for future treatment could be improved by encouraging frail older people to speak to a clinician they knew and trusted, starting conversations early, making sure other people knew what mattered to them, and making sure their families, carers and clinicians agreed about future treatment options and preferences.
In Phase Two we held two co-design workshops, one with seven health care professionals and another with three patients and a carer. We wanted to discuss our findings and to seek advice on who to share them with and how. People attending told us they thought we should let clinicians, patient support groups and carers networks know about what we had found. They thought it would be best to do this by going to places where those people met and talking to them.
We also had a stall at a science festival where we talked to the public about our study, attended a nursing conference where we presented what we had learnt from the interviews, took part in a teaching meeting at the hospital to share our findings with colleagues and are now writing an article for an academic journal.
Finally, we made an animation of our findings to help us to talk to people and for others to watch.REC name
London - Chelsea Research Ethics Committee
REC reference
21/LO/0125
Date of REC Opinion
3 Mar 2021
REC opinion
Further Information Favourable Opinion