Having agreed to take on the role of Patient Co-Chair for the TP-CKD Measurement Workstream I needed to know what I had let myself in for.
Having been a renal patient since childhood, I felt I was well equipped to deal with the “patient” part of the role, and being a Research Scientist, often using PROMs and PREMs, I had that part covered as well! Great, I was ready to go, or was I? Marrying the two things together, well that was a different story and totally new; this would be a steep learning curve.
The basic remit of the Measurement Workstream was to come up with a Patient Reported Outcome Measure (PROM) and a Patient Reported Experience Measure (PREM), which could be used in conjunction with the Patient Activation Measure (PAM), by renal units across Great Britain.
PAM is a fairly new tool which has come from America and is used to assess an individual patient’s knowledge, skill and confidence for managing their own health and healthcare. Or, put another way, how much patients believe they understand about their illness and who they believe is responsible for looking after them on a day to day basis. The idea is that more “activated” patients deal better with their renal disease.
Working as a team we went through all PROMs specific for Renal Patients, to decide which one we should use. This was not as easy as it may seem – renal patients come in all shapes, sizes and treatment modalities. Many were specific to patients on haemo-dialysis, peritoneal dialysis or transplant patients. But this project is hoping to collect data from patients who are pre-dialysis, on all forms of dialysis, right through to patients who are many years post kidney transplant, so must be all inclusive.
Many people with CKD have co-morbidities and renal disease is not restricted to hospital visits and taking tablets but tends to affect many, if not all, aspects of a patient’s life. We also need to look at the person as a whole entity and not just as a renal patient so we needed a more generic PROM.
The easy bit was now over – next for the PREM.
How do you measure a patient’s experience of the service they receive, to provide valuable insight into how well the service is working? What needs to be looked at?
As a suitable validated tool could not be found we decided to design a new one encompassing all aspects of care that patients wanted measuring. So this new renal PREM has been developed by the Measurement Workstream in conjunction with the BKPA and NKF, so that it was designed predominantly by patients. As this will be used annually by all renal units it is hoped that it will soon become a validated tool.
This is a quick over view of what we have been up to and I hope all the hard work everybody on the workstream has done comes across.
Claire Corps
Claire is a Doctor of Research Scientist working in the NHS and is Co-Chair of the Measurement Workstream in the Transforming Participation in CKD Programme.
Claire’s education includes her PhD in Energy Kinetics in Preserved Livers which she studied for in Leeds and an M.Sc. in Immunology and Immunogenetics at the University of Manchester, preceded by her BSc (Hons) in Microbiology in Leeds.
Claire’s interest and knowledge in the programme is driven by her unique perspective on kidney disease, having had renal failure since childhood and following haemodialysis has been the recipient of both kidney and liver transplants. She is an active Committee Member of West Riding Kidney Patients Association and the UK Renal Registry Patient Council.
Amateur dramatics are also on Claire’s lists of interests as well as the British Transplant Games and the Transplant Choir. While she describes her guilty pleasures as enjoying listening to Wham! and Abba, she’s also a member of MENSA – so probably best not to question her further about this!