The new Kidney health section of the award‐winning healthtalk.org website, which went live this morning to coincide with World Kidney Day, has been devised and created by researchers at the Universities of Bristol, Oxford, Manchester and University College London and lay representatives from the British Kidney Patient Association and the Kidney Patient Guide.
The NIHR SPCR funded ESKIMO study interviewed 45 patients, 22 primary care professionals during the study to understand patients’ and health professionals’ experiences of early stage CKD.
Findings revealed a gap between what health professionals seek to explain and what patients may understand. Primary care professionals often avoided using the term ‘CKD’ when talking to their patients with early stage kidney impairment in an attempt to avoid causing unnecessary anxiety. Patients’ accounts of receiving information about their kidney health echoed the phrases described by health professionals. However, patient interpretations showed some of these phrases to be unhelpful, raising further questions and adding to, rather than diminishing, initial concerns. Use of words like ‘kidney damage’ or ‘kidney failure’ could be quite frightening, and the term ‘chronic’ was sometimes misinterpreted as meaning serious, whereas a description of the decrease in kidney function as a percentage or stage seemed to be less alarming. However, the exact meaning of the test results was often unclear and those who were told their CKD stage didn’t always understand what this meant. For some patients it could be difficult to understand that they had been diagnosed with CKD when they did not experience symptoms. Attempting to reassure patients that their kidney impairment was nothing to worry about, without providing explanatory information about the condition, could leave patients concerned and wanting to know more about possible causes, the meaning of test results, and whether they could do anything to prevent further decline.
Patients can visit www.healthtalk.org and watch video clips from interviews with people talking about their experiences of early stage CKD and learn about why kidney performance may begin to decline and who is at risk, how kidney performance is measured and why it is important to check it regularly. Patients can also learn about how people find out that they have early signs of kidney problems, their experiences of having regular check-ups, their information preferences, and the ways in which they try to look after their health.
For health professionals, the resource provides an insight into the experiences of people who are being monitored for early signs of kidney problems – what information they have received, what they found helpful and unhelpful, their key questions and concerns, and their views on how monitoring could be made more meaningful to them.
Lead researcher Dr Jeremy Horwood from Centre for Academic Primary Care, University of Bristol explains:
The kidney health section of the healthtalk.org website provides a valuable resource for both patients and Dr’s to support and inform people going through similar experiences. The video clips are also a great resource for teaching & training to improve understanding of how patients view and experience the diagnosis and management of early stage chronic kidney disease”.
ESKIMO study was funded by the National Institute for Health Research (NIHR) School for Primary Care Research (SPCR) and additional funding was provided from the NIHR Programme Grants for Applied Research programme. The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health.