Kidney Transplant Risk Communication Tool v1.0
Research type
Research Study
Full title
STUDY TO DESIGN A PERSONALISED ONLINE COMMUNICATION TOOL TO HELP PATIENTS ASSESS THEIR RISKS AND BENEFITS WHEN CONSIDERING KIDNEY TRANSPLANTATION
IRAS ID
260262
Contact name
Chris Watson
Contact email
Sponsor organisation
Cambridge University Hospital NHS Foundation Trust and University of Cambridge
Duration of Study in the UK
1 years, 4 months, 1 days
Research summary
Research Summary
The decision to join the waiting list for an organ transplant is an incredibly hard choice for anyone to make. This is an emotionally difficult time for patients and their families, who are asked to consider complex and involved healthcare options. These pressures undoubtedly affect how people process and understand such information.In other illnesses, international studies have shown that a carefully designed decision aid, which steps patients through the details and outcomes, can help patients compare risks and reduce the stress involved. Patients have reported that one of the most important pieces of information they need to make such decisions is their survival chances with and without a transplant, along with the probability of an organ becoming available.
We therefore propose to produce an online risk communication tool to give patients a personalised view of the potential risks and benefits of their options, and to help them understand what will occur following transplantation.
We would develop this tool for kidney transplant patients, in close collaboration with both patients and their healthcare providers to ensure that it suits their needs.
Using their own details, the tool would illustrate the personalised risks and outcomes associated with their options in a clear and visual way. Evidence suggests that this will give patients the best opportunity to make informed and shared decisions with their doctors, and help to reduce their emotional stress.
If this tool is successful we anticipate its adoption across the UK for kidney transplant, and that it could be adapted for other organs.
Summary of Results
Thank you to all the patients, patients’ families and clinicians who took part in this research. Thank you for taking the time to talk to us, or for allowing us to sit in on consultations in clinic, your input was invaluable.Study to Design a Personalised Online Communication Tool to Help Patients Assess their Risks and Benefits when Considering Kidney Transplantation (Kidney Transplant Risk Communication Tool)
Sponsor: Cambridge University Hospitals NHS Foundation Trust and University of Cambridge – The Winton Centre For Risk and Evidence Communication
Funding: Winton Centre for Risk and Evidence Communication, University of Cambridge
Study Objective: “To design and create an online risk communication tool to present personalised risk information to potential adult lung / kidney transplant patients in order to help them make decisions about whether or when to join the organ waiting list.
- To determine the visualisations (e.g. graphs and charts)and other communication formats that allow patients to most accurately understand their risks
- To help communication between clinician and patient when deciding on whether to join the organ waiting list
To involve patients and clinicians in designing how this important information is communicated”Who did we speak to:
We wanted to include a range of clinicians, in a range of geographical areas of the country, a range of patients’ experiences, ages, genders, backgrounds, abilities to understand numbers and abilities to understand health information.We use the word ‘clinician’ to mean doctors, consultants, surgeons, nurses, nurse specialists, social workers, psychologists and other healthcare professionals.
We spoke to patients and sometimes their partners or other family members. Family support is vital in kidney transplantation and we found that including family members and their views and thoughts, was vital.
What happened at each stage of the study, what were the main questions studied?
The study was carefully designed around the specific objective to create a communication tool. This first of all involved understanding what decisions are being made by patients and clinicians, at what points in the patient ‘journey’ and how data might help them at each point.The study was broken down into 3 stages plus initial pre-study conversations with doctors, nurses and other clinicians in order to design and to set up the study.
Set up – we spoke to 8 nephrologists, 2 surgeons and 8 transplant coordinators
Stage 1 – we observed 7 clinical encounters between patients, consultants, surgeons and coordinators at one transplant site. We were unable to visit any more hospital sites in person due to Covid-19.
We wanted to discover what information is currently communicated to patients and how.
By ‘living’ the experience of the patient we can better understand how to communicate the outcomes (waiting time and survival) in the tool and also find out if there is anything else that we can include to make these consultations easier for both patients and the clinicians running them.We attended ‘patient seminars’ where patients are educated about transplantation and dialysis prior to treatment. We attended seminars at; Royal Stoke University Hospital, Plymouth Derriford Hospital, Norfolk and Norwich University Hospitals, Shrewsbury , Sheffield Teaching Hospitals.
Stage 2 – we conducted ‘discovery’ interviews with 19 kidney transplant patients. These patients ranged in ages from in their 20s to in their 60s and ranged in disease and background, and whether they had already had a transplant, were waiting for a transplant, or were not yet on the transplant waiting list.
We wanted to find out what patients feel as they go through the process of being listed for a transplant, what information is useful to them and at which time points, what they remember, what they understand. We wanted to find out how they currently receive information and how they would have wanted to receive it, what was good or bad about their experience.
We wanted to know what it was like for a patient to go through the process or being assessed for, listed on the waiting list, waiting on the list and receiving a transplant.
We wanted to be try and address issues and pinch points that currently exist.These interviews were usually long (over an hour), often took place at patients’ homes, were more conversational, allowing patients to talk about whatever was important to them.
We conducted ‘discovery interviews’ with 8 transplant coordinators, 4 nephrologists and 2 surgeons across all 8 sites.
Stage 3 – we showed versions of the tool or the graphs and charts for the tool, to patients and clinicians. We conducted interviews with 14 clinicians and 19 patients in this stage.
We amended the tool based on feedback and then did further rounds of testing, iteratively amending and refining the tool.Where and when the study took place
The observation stage of the study took place at Addenbrooke’s hospital in Cambridge.The interviews took place by video call.
Why was the research needed
The Winton Centre for Risk and Evidence Communication produced a tool based on data and models created by NHS Blood and Transplant, that would show more personalised outcomes for kidney transplant patients. The tool shows likely waiting times, graft survival and survival based on certain patient characteristics, such as age, disease and blood type.Prior to this work, kidney transplant patients’ graft survival, survival and waiting time could not be personalised in this way and would usually be explained to patients verbally.
This tool allows more personalised outcomes and presentation of the survival and waiting time likelihood to be communicated in a graphical, more understandable way, producing printouts of patients’ results that they can take home to discuss with family and friends.
How has the study helped patients and researchers The tool is now being used in some clinics and is helping communication between clinician and patients.
What we learned from patients and clinicians has been extremely relevant and useful, both in the development of this tool and in the understanding of patient – clinician communication generally.
The project achieved everything we wanted it to, we learned everything we wanted and we implemented this learning into a working tool.Unfortunately, due to the rapidly aging data and models that were used to create the tool, the finished product is not as relevant as it could be today. Updating the data and models would be a fairly simple task because we designed the tool to be very easily updated.
This is unfortunately holding back the potential of the tool to be as useful and used as it could be, it should be helping patients understand their options and make decisions about their care, and helping clinicians explain these options to them, but due to the age of the current data behind the tools, the outcomes are becoming less relevant.
Limitations
Unfortunately the tool took longer than anticipated to develop due to unforeseen issues around models behind the tool (the maths behind the tool that produces the results) and later in the project, Covid-19.The data behind the tool is, unfortunately, over 5 years old now, as are the models, and in addition, Covid-19 has had an impact on transplantation and NHS services in general, making the outcomes less accurate.
For these reasons the validity of the outcomes of the tool (the results) have been questioned by some clinicians.
It would be fairly straightforward to update the data and models behind the tool and if this happened the tool would be more relevant and more widely used.The premise and functionality of the tool has been very well received otherwise.
Further research planned
We are currently writing up the study in order to share the feedback and experiences of clinicians and patients during the development of the tool.REC name
West Midlands - Solihull Research Ethics Committee
REC reference
19/WM/0310
Date of REC Opinion
21 Oct 2019
REC opinion
Favourable Opinion