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RePROM launch

The RePROM study launched recruitment following a site initiation visit at the Queen Elizabeth Hospital Birmingham on 30th October 2018. For the most up-to-date information, please follow us on Twitter @re_prom.

RePROM protocol now published in BMJ OPEN

Protocol publication: Kyte D, Bishop J, Brettell E, et al Use of an electronic patient-reported outcome measure in the management of patients with advanced chronic kidney disease: the RePROM pilot trial protocol BMJ Open 2018;8:e026080. doi: 10.1136/bmjopen-2018-026080. 

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RePROM development paper now published in JPRO

Development paper publication: Kyte D, Anderson N, Auti R, et al. Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease. Journal of patient-reported outcomes 2020;4(1):1-9. 

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The RePROM trial is now complete

The full results will be published in scientific journals and presented at conferences and meetings. 

The plain English summary of the results appears below. 


Chronic Kidney Disease (CKD) affects around 1 in 7 people in the UK. Patients with advanced CKD can sometimes get worse very quickly. Unfortunately, this can happen between visits to their clinical team, meaning they need to go to hospital as an emergency and have more ill-health as a result. 

Some researchers and clinicians believe it would be helpful to ask patients to use a computer or smartphone to provide regular information about their quality of life and symptoms, in between their hospital appointments. This information can be collected using questionnaires known as ‘electronic Patient-Reported Outcome Measures’ or ePROMs.

Kidney clinicians believe they could use ePROMs to find out if a patient needs urgent care, so that they can take action straight away. This could help patients with advanced CKD by responding to their health needs before emergency care is needed.


The aim of the RePROM study was to see if it was feasible to set up and run a miniature ‘pilot’ trial. If we were successful, this would mean we could go on to run a much larger trial, across multiple hospitals, which would tell us if ePROMs benefit patients and if the NHS should routinely use them for patients with CKD.

The RePROM trial methods

We conducted an ePROM pilot trial at the Queen Elizabeth hospital between October 2018 and April 2020. We invited patients with advanced CKD to take part. Those patients who took part in in the trial were put into one of the following groups.

  • Group 1 were asked to complete a monthly ePROM questionnaire online. This questionnaire asked patients about their symptoms. This information was shared with their kidney team. They also received online advice on how to manage any symptoms they had reported.
  • Group 2 were asked to continue with usual care.

Both groups were regularly followed up for a maximum of 12 months. Also, at the end of the study, we interviewed 24 patients to ask them about their experiences.

The RePROM trial results

In total, 52 patients agreed to take part in the study, which represents a good level of recruitment. There were 24 patients assigned to the ePROM group and 28 patients continuing with usual care. 

We received a high proportion of the ePROM questionnaires we had asked for (over 70%).

In our patient interviews, many patients felt that using the ePROMs was helpful for them. We have included some example quotes from patients below which have been anonymised.

  • “On a few occasions I was very impressed that what I had put on the form, obviously had been noticed and had been picked up. And was discussed with me at clinic and I thought that was one of the big positives of the form itself.”
  • “…it does give you some reassurance if you can be told, well that’s normal for the problems you’ve got.”
  • “I found it positive. I think it takes worries away to be honest with you… You have the advice that was given, so you didn’t feel as if you're the only person that ever-had itchiness before. It was obviously something that was very common. So, I would have said it alleviated any anxiety, for me.”
  • “…it’s nice to know that, you know… if anything is going wrong then I can get help more or less straightaway.”

However, a number of patients also reported experiencing IT issues on occasion and there were many suggestions on how we needed to improve the ePROM system to make it more user-friendly.

Final conclusions 

The results of the RePROM pilot trial have shown it is possible to conduct a larger, multi-hospital, trial. We will now use the data we have collected from patients, and their comments during the interviews, to help us improve the ePROM system before the next stage of the research.

In November 2020, we also arranged a UK-wide summit to discuss how ePROMs can be used in the NHS to benefit the whole kidney patient community. This summit included patients, doctors, nurses and research funders. We also heard from scientists who are using ePROMs in the USA, Australia and Denmark. The event was supported by the UK Renal Association, the British Renal Society, Kidney Care UK, National Kidney Federation and Kidney Research UK.

Our next steps will be to seek funding to run a large clinical trial, across multiple hospitals, which will tell us if using ePROMs benefits patients and was are cost effective for the NHS.