Health knowledge made personal
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The audit provides a detailed review of the issue of late presentation and commencing dialysis as an emergency across the Pan Thames area. Twelve kidney units participated fully, and one partially, leaving only two units in the region that did not get involved. It covered a three-month audit period with a further three months of follow up and assessed the options, support and treatment of 72 people presenting late to an equal number who received pre-dialysis work up. The methodology could be tweaked by any kidney care network to examine the situation elsewhere. There was no difference in the age of late presenters and planned starters but they were different in nearly every other respect. Late presenters included a higher proportion of people from the black and ethnic minority origin. They were more likely to receive only verbal information. After three months of follow-up only 20% of late presenters received dialysis through an arteriovenous fistula compared to 65% of planned starters; only 11% of late presenters were transplant listed, compared to 39% of planned starters. Two of the 30 units did not have specific pathways for patients starting dialysis as an emergency. Patients’ comments ranged from “I would appreciate more discussion on how I am coping with dialysis. Each session leaves me weak and dizzy. I would like to know if this is likely to continue and what the prospects are for reducing the side effects.” (Late presenter) “My transition to dialysis was well managed and smooth. I am impressed by the professionalism and courtesy of the large number of staff with whom I interacted with as part of this process” (Planned starter) Patient quotes are invariably valuable and insightful. This audit provides four pages of detailed individual patient comments- well worth reading, whether you are from the Thames region or not. Patient experience is one of our blind spots and studies like this one will fill that gap. At unit level, late presentation was a feature in between 0-37% of cases. It may have been that the audit period was not long enough to interpret this variance- some of the numbers were quite low. I was however pleased to see that in the bigger units, those accepting more than 40 people onto their dialysis programme in three month audit period, only one had greater than 15% late presenters- well done, Bart’s (11%), Kent (10%), Kings (14%), Royal Free (21%) and St. Heller’s (15%). These findings are consistent with the downward trend that the UK Renal Registry has reported with a fall nationally from greater than 30 % of people starting dialysis as an emergency a few years ago to 19% in the most recent report. They also suggest that there is still considerable room for improvement in timely referral preparation and choice. Sue Cox’s a Consultant Nurse at Guy’s, Kelly Blaine and Joanna Pope NHS Commissioners and Kerry Gardener the Project Coordinator; who lead the project , made some specific recommendations, including:
It is encouraging to see this important area audited, progress in late referrals has been made and root cause analyses across the patient pathway including primary and secondary care should help keep this on the agenda with emerging clinical commissioning groups. Still work to be done on improving choice for these vulnerable patients |
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It is evitable that some people with advanced kidney disease will require dialysis shortly after they have been identified and without the planning and preparation required for good outcomes, but in how many of these people have there been missed opportunities to either delay progression or plan for a more informed and better start to transplantation, dialysis or conservative kidney care?