This is the Renal Unit Guidance (RUG) and contains everything you need to help you successfully run the Kidney Patient Reported Experience Measure (PREM) survey for 2023 in your unit and satellite clinics.

2023 is the seventh year of the validated Kidney PREM. This year, we are moving online with a digital-only Kidney PREM.

We also once again welcome young people aged 12 years and above, and parents/carers of children of any age receiving treatment for chronic kidney disease to complete the survey.

This information provides an overview of the kidney PREM and what you can do in your unit to support data collection.

The Kidney PREM has been developed by professionals, patients and carers and has had input from kidney patient charities such as the National Kidney Federation, Kidney Care UK, and the UK Renal Registry (UKRR) Patients’ Council.

This year the collection of Kidney PREM will be going digital only. This means there will be no paper versions of the PREM survey delivered directly to units.

The Kidney PREM is going digital for several reasons, including improved data quality, ensuring the number and quality of free-text comments, reducing our impact on the environment, and reducing the time and workload impact for renal unit staff.

Last year, 15,210 paper surveys were distributed but only 4,033 were returned.

Many were incomplete and had the centre name, treatment type, ethnicity, age, etc. missing. Incomplete data makes it difficult to give an accurate picture.

What about patients/carers who cannot access the survey digitally?

When examining the characteristics of respondents (age, gender, ethnicity) according to their completion method (paper or online), equity of access for minority ethnic groups was not an area of concern. However, some differences were noted in those 56 years old and over, with more opting to use the paper surveys.

We are working with PREM champions to support those who may face difficulties accessing the PREM survey online, for more information on the online-only Kidney PREM, click here.

With the support of the British Association for Paediatric Nephrology, this year’s Kidney PREM continuous to be extended to all thirteen Paediatric Centres, allowing the collection of views from young people (aged 12 years or older) and parents/carers of children of any age who are receiving treatment for chronic kidney disease.

The national Kidney PREM strategy and data collection aims to:

1. Facilitate benchmarking of kidney patient experience
2. Inform service improvement for individual kidney teams
   

Each kidney service will be sent:

We need your support in ensuring all patients and parents/carers can take part in the annual survey, whether being cared for in-centre or at home. You can do this in a number of ways, depending on the resources available at your local unit.

If you are sending out patient letters

• Between September and 6th November, include the URL link to the online PREM survey at the bottom of all clinic letters. The footnote could read:

“Share your experience of kidney care. Follow this link to have your say and help us improve: kidneycareuk.org/prem" and/or;

• During September and October, slip a business card in with all letters being sent out to kidney patients from your unit.

If a patient has a smartphone

• Throughout October, encourage patients to complete the survey online using their smartphone whilst in the waiting room, or receiving dialysis.
• Please help those willing to take part to type the URL into a web browser or scan the QR code on the business card using their camera to bring up the survey.

If there is access to a tablet or laptop at your unit

• Have the PREM 2023 survey link bookmarked within your browser, so it is easy to find.
• Offer your unit’s tablet or laptop to those without access to a smartphone.
• Remind participants that they can receive help to complete the survey from a friend, family member, or volunteer if available.

If your unit has a patient text messaging service

• Send the link to the online Kidney PREM survey out to patients via text during October.
• Your text could read:

“Share your experience of kidney care by taking part in the national PREM survey: Follow this link to have your say and help us improve: kidneycareuk.org/prem"

When you receive the resource pack – rally the troops and make it available!

• Familiarise yourself with the contents and distribute the posters and business cards across your unit, clinic areas, and satellite units.
• Identify a PREM champion at each site – you will need to determine who in your unit can help patients and staff members, advising how and where to complete the survey and the importance of doing so.
• Get as many people involved as possible! It is important to engage your team so that everyone knows about it and can encourage patients and families to complete the survey.

• All patients being treated in your unit should be encouraged to take part.
• For adult kidney centres: all patients are eligible to participate, regardless of their CKD stage or treatment modality.
• For paediatric centres: eligible patients are those who are aged 12 years and older. All parents and carers of children receiving treatment for CKD (any age) can also complete the survey. More than one parent or carer can complete the survey.

The survey is anonymous

• This is important because participants need to know they should be completely honest in their responses and that there is nothing that can identify them in the survey. At the end of the survey, participants are asked to tick a box if they are happy for any comments about their experiences to be shared anonymously with their named unit, to help improve local care.
• We encourage participants to ask family, friends, or volunteers to help them complete the online survey if they need support to do so. To protect anonymity, it is important that staff do not help patients complete the survey.
• Staff can help the patients access the online link and use their digital devices, but not complete their answers to the Kidney PREM questions.
• The survey can be completed by entering the URL link into a web browser, or by scanning the QR code if patients have smartphones.
• It is important that patients select the correct renal unit from the drop-down menu on the first page of the online Kidney PREM.

• The online survey is available to complete in English, Welsh, Urdu or Gujarati.

The deadline for completed surveys is 6th November 2023. After this date, the online survey will be closed and the results analysed.

Once the analysis is complete (Spring 2024), unit results will be available on the UK Kidney Association and Kidney Care UK websites. A national report on the results will be produced.

The results data should be used as the basis for each unit team to discuss their findings and start to develop an action plan for areas requiring change or improvement.

When you have received this analysis it is important that you give feedback on the results to your patients. You can do this in many ways. These might include:

• A “you said…we did….” board describing the findings and the actions you are taking
• A leaflet, handout or poster. Your communications team may be able to help you with this

Examples of what will be available to you when results are published are:

• A template poster for you to complete with your local results
• A patient information leaflet
• Infographics of the Kidney PREM results

All resources will be published on the UK Kidney Association and Kidney Care UK websites.

www.kidneycareuk.org/prem

www.ukkidney.org/kidney-patient-reported-experience-measure