Symptom impacts in chronic kidney disease


General information

What is the aim of our research?

Our research team at the University of Birmingham are investigating what symptoms are most important to patients with CKD. Using this information, we hope that in the future we will be able to routinely monitor patient’s symptoms between visits to the hospital. This may help give a better picture of patient’s kidney health than solely relying on tests conducted at the clinic.

What are we asking you to do?

We would like you to complete a short online survey. In this survey, we will ask you some questions about different combinations of symptoms. Based on your experiences, we will ask you to choose which combinations you think are better (more tolerable). From your answers we will be able to see which symptoms you think are most important.

How will your data be used?

Your answers will be completely anonymous and will be kept confidential.  Please note that your participation is voluntary.  You may withdraw at any point during the questionnaire for any reason, before submitting your answers, by closing the browser.  However, if you complete the survey, we will be unable to remove your answers from the analysis due to the anonymous nature of the survey.

Your responses will be stored in a password-protected computer at the University of Birmingham and may be used in academic publications.  Your IP address will not be stored.

Who will have access to your data?

Your data will not be shared beyond the research team in the Institute for Applied Health Research at the University of Birmingham.  Data will be stored for 10 years.

What if there is a problem?

This study has been reviewed by, and received ethical approval, through the University of Birmingham Ethical Review process (reference number ERN_21-0649)

If you have any concerns about any aspect of this project, please contact the researcher (Ben Fletcher: email b.r.fletcher.2@bham.ac.uk), who will do his best to answer your query.  The researcher should acknowledge your concern within 10 working days and will give you an indication of how they intend to deal with it. 

If the researchers have not addressed your concerns and you still wish to make a complaint you can contact the Research Ethics Manager at the University of Birmingham, Susan Cottam (email s.l.cottam@bham.ac.uk; telephone 0121 414 8825)

Consent

You may only participate in this survey if you are 18 years old or over.

By beginning the survey, you acknowledge that you have read the information, and agree to take part in the knowledge that you are free to withdraw at any time, without giving a reason and without penalty.  If you decide to quit before you complete the survey your answers will not be used.

Further information

The survey may contain some sensitive questions about the symptoms that some patients with CKD may experience. Sometimes participants can become uncomfortable when answering these types of questions. We need to ask these types of questions so that we can gain an accurate picture of the burden of CKD.

If after completing this survey you would like to find out more about CKD, or you would like to get more support, Kidney Care UK provide some useful online information which can be accessed using the links below. If you are concerned about your CKD, please contact your GP to make an appointment. 

https://www.kidneycareuk.org/about-kidney-health/

https://www.kidneycareuk.org/get-support/