Speaking to Renal Interventions, Maarten Snoeijs (Maastricht University Medical Centre, Maastricht, The Netherlands), discussed his presentation at the Hamburg Dialysis Access symposium (8–9 September, 2023 Hamburg, Germany) which explored the possibilities that would be provided by a vascular access registry, the issues that can arise when trying to implement registries, and the impact on patient outcomes that a registry such as this could have.
The first point that Snoeijs was keen to highlight was that, whilst there is a dialysis registry, The Netherlands does not have a specific dialysis access registry. Despite this, he still feels that the dialysis registry is useful as an insight into vascular access in The Netherlands. “What we do have in The Netherlands is a dialysis registry. All the patients who have renal replacement therapy are in the registry—so that’s transplants, peritoneal dialysis, and haemodialysis—and for the haemodialysis patients, the type of vascular access is registered every three months.” He continued by stating that, with this information, “it is possible to see how The Netherlands [performs] compared to other countries with similar registries with regards to fistula use, dialysis catheter use, and we also have the opportunity to see how the different dialysis units within the country compare with each other, and that is quite interesting, because there’s a large variation in practice between countries—we know that from previous publications—but also within the country.”
Snoeijs does, however, feel that there is “room for improvement.” His main issue is that, whilst useful information is collected by published observational research—it was able to show that 20 to 30% of fistulas that are placed are never being used, because they fail, and there are more patients who require additional interventions before the access can be used—ideally, this information would be collected in a vascular accesses registry. “I presented some data from an observational cohort study within the country,” Snoeijs stated,” that showed how many interventions are needed for getting the access working, maintaining a functional access, [as well as] the variation between centres, but [that data] required a lot of effort from a PhD student to collect.” The key issue, he feels, is finding “a balance between the level of detail in the registry with the administrative workload.” “Sweden has a beautiful registry,” Snoeijs avers, “but this requires a lot of effort and work by the dialysis nurses to maintain. That is the difficult thing, at least in The Netherlands, as we [have tried] to include some more items in the national registry, but this met some resistance due to the administrative burden for the healthcare personnel.”
The ideal situation, according to Snoeijs, would be to expand on the current dialysis registry that already exists. “I would say that to expand a bit would be great; there’s recent progress in defining core outcome measures that can be easily measured without investing too much time and manpower, and there is a validation study—the VALID study, soon to be published—that also shows that it can be quite accurately measured by just the normal dialysis nurses who work in the everyday clinic.” This study, which was conducted by the Standardised Outcomes in Nephrology Group (SONG), defined the core outcome measure as “the time until the next intervention, or the number of interventions per year,” which, if recorded as part of a vascular access registry, “would take little effort and would be a good step forward,” according to Snoeijs.
It is the “administrative burden,” however, that he feels is the greatest roadblock to further progress, at least in The Netherlands. “Privacy issues,” he says, “are, at least in The Netherlands, being taken care of, because all the patients already give consent to register their data in the renal replacement registry.” One thing that Snoeijs feels might be helpful with the administrative burden is if electronic patient files were able to capture the information and deliver it automatically to the registry. The issue with this however, may be that “[digital patient file services] are being overwhelmed by different requests like this, from each and every specialist.”
Snoeijs also outlined what he felt would be the main benefits of an updated and expanded vascular access registry, for both patients and clinicians. “I’d say that we would be able to better define the quality of care and the outcomes of care, and be aware when a unit is functioning below or above expectations so we can learn from the ones who do well and the ones who do not so well and try to improve their outcomes by changing some aspects of their practice”.
Snoeijs’s presentation at the Hamburg Dialysis Access symposium concluded by exploring quality indicators, which align with what has been suggested in the Kidney Disease Outcomes Quality Initiative (KDOQI) guidelines. He stated he feels that “this aligns with this core outcome measure of the number of interventions. So, when we do register this, how many interventions, what kind of interventions are being done for the vascular access, I think that nicely aligns with the quality indicators that have been proposed and I think this would be helpful as a way forward.”
When asked what he felt was the key message for people to take from his presentation, Snoeijs said that by registering “core outcome measure for vascular access and haemodialysis—the access-related intervention rate, we can compare this measure to a benchmark and see which areas remain for improvement, which would be a great step forward to improve care for these patients”.
