Decision Aid supports patients with information and active involvement in decisions

Choosing a treatment is one of the most difficult decisions for patients with chronic kidney disease. When their kidney function drops below 15%, they need to choose between transplantation, dialysis (peritoneal or haemodialysis) or conservative care (choosing not to start renal replacement therapy). But how do you, as a patient, make a decision with such far-reaching consequences? And how do you, as a healthcare professional, know which treatment best fits your patient’s life? 

Nephrologist René van den Dorpel and project lead Ellen Parent for the “Outcome Indicators in Kidney Failure” pilot at Maasstad Hospital talk about shared decision-making in kidney failure.

The Kidney Failure Decision Aid developed within this outcome data project offers a solution. The tool uses outcome data to support patients and professionals in deciding on the most appropriate treatment together. And with success: the Decision Aid is now being used in sixteen hospitals.

‘The Decision Aid helps to ensure that patients are better informed first, and empowers them to take part in the decision-making process themselves,’ explains consultant nephrologist René van den Dorpel from Maasstad Hospital. Together with, among others, fellow nephrologist Willem Jan Bos (St. Antonius Hospital and LUMC), he was closely involved in the development of the Decision Aid.

Of course, nephrologists were already providing information about treatment options for kidney failure before the Decision Aid was introduced. ‘But back then, patients found it harder to judge what a particular choice would actually mean in practice.’ Van den Dorpel now sees that the information patients receive has improved, and that the Decision Aid actively gets them thinking. ‘Because of the outcomes patients are shown, they start asking themselves the right questions: “What do I actually want?”, “What matters most to me?” and “What fits in with my life?”’ Previously, he says, it was quite difficult to bring these kinds of issues to the surface. And when a patient has already thought things through before coming into the consulting room, this helps the doctor as well. According to Van den Dorpel, ‘It’s easier for me to involve patients in the decision and to ask more specific questions. Overall, it leads to a better conversation in the consulting room. And that’s exactly what we’re aiming for.’

The Decision Aid helps to ensure that patients are better informed first, and empowers them to take part in the decision-making process themselves.

– René van den Dorpel, nephrologist, Maasstad Hospital

Sliders and videos

The Decision Aid provides patients with all the relevant information in one place. They first read about kidney failure, the possible treatments and what these might mean for them. After that, patients can indicate what they find important and what their considerations are. They are asked about their hobbies, work and how they view life. Using sliders, patients can indicate where they place themselves on a continuum between statements such as “There are still things I want to do in my life” and “I feel my life is complete”. The same sliders are used to explore treatment preferences. Patients are, for example, asked to indicate a preference for dialysing at night or during the day.

The tool also shows what the different treatments would mean for them in practice. It uses “patients like me” information based on national outcome data from Nefrovisie and outcome data from Santeon. A clear visual overview shows how treatments affect, among other things, sleep and travel time. For patients who find reading difficult, explanatory videos about the treatment options (Nieren.nl) are included, as well as experience videos from other patients, taken from the ‘Nierwijzer’ (Kidney Guide) of the Dutch Kidney Patients Association (NVN). After the questions have been answered, a summary of the responses and slider positions is created, which the patient and nephrologist can review together. 

Patients involved

A national multidisciplinary working group was formed to develop the Decision Aid, with patients and the NVN involved from the very start. This has been crucial to the success of the Decision Aid, says Ellen Parent. As project lead for the “Outcome Indicators in Kidney Failure” pilot at Maasstad Hospital, now working at the Santeon programme office, she has been involved in the project from day one. To understand what patients find important in a Decision Aid, an online survey was carried out by the NVN before the project started.

According to Parent, ‘That already gave us insight into which elements and outcomes matter most to patients who have to make this decision. We then used focus groups to explore how patients wanted that information to be presented in the Decision Aid. Those sessions also made it clear that patients find it important for their healthcare professional to really get to know them – to understand who they are as a person and what matters to them. That was a real eye-opener for me.’

Parent also learned from these focus groups that, when it comes to treatment choices in kidney failure, some patients would rather postpone the decision. ‘With this condition, kidney function declines gradually and at some point you have to choose whether to start renal replacement therapy. Patients know this, but some prefer not to think about that decision just yet. The Decision Aid helps them to start asking themselves questions in good time and think about what matters to them. Moving a slider between two statements prompts you to actively reflect on what you really think.’

Patients feel it is important that their healthcare professional really gets to know them, so they understand who they are as a person and what matters to them

– Ellen Parent, project lead, “Outcome Indicators in Kidney Failure” pilot, Maasstad Hospital

As normal a life as possible

Kidney patients facing this major treatment choice are not just interested in survival figures, as Van den Dorpel has repeatedly seen in practice. ‘What I see time and again is that patients don’t necessarily want to live as long as possible – they want to live as normally as possible. They want to be hindered as little as possible in doing everyday things. Being able to go to work, not feeling tied down, being able to travel.’

Kidney patient Mia Reesink, who regularly shares her experience when speaking about the Decision Aid, confirms Van den Dorpel’s words: ‘What do I want to do with the rest of my life? That’s not a question you ask yourself every day. I’m from an older generation and my remaining life is shorter than for many others. But I just want to continue living as normally as possible; to do as much as I can and stay as active as I can. The choice is important to me, because the treatment will become part of my life.’

Nuance

Back to the survival figures. Patients in the focus group agreed that this information had to be included in the Decision Aid, however not everyone wanted to be confronted with these figures straight away. The team therefore decided to build this information in layers: only after several clicks do coloured figures appear, showing what percentage of 100 people are still alive. The same careful balancing act applied to other elements. ‘We spent a long time thinking about the wording of the slider statements. You’re trying to find the right tone – to encourage the thinking process without being too confronting,’ says Parent.

Van den Dorpel particularly wants to stress the importance of nuance when it comes to the ‘patients like me’ information: ‘It’s always difficult to give patients a prognosis, because you’re dealing with averages. “Patients like me” sounds good, but it doesn’t mean it’s also “prognosis like me” or “future like me”.’ In their view, it is up to nephrologists to bring that nuance into the conversation.

Sixteen hospitals

The Decision Aid has now been given to kidney patients around 1,200 times in sixteen different Dutch hospitals. And the likelihood is high that it will soon be used in even more hospitals. The tool is currently under review by the guidelines committee of the Dutch Federation for Nephrology, with the aim of including it as a practical tool to support shared decision-making about renal replacement therapy.

Initial experiences are positive. According to Van den Dorpel and Parent, the success is due to several key factors: involving patients and the Dutch Kidney Patients Association (NVN) from the start of the project and the design of the Decision Aid, the user-friendliness of the tool and the integration of existing national initiatives. According to Parent, ‘Right at the beginning we put a lot of effort into bringing together a national working group.

The result is a broad, nationwide Decision Aid.

The relevant professional body is involved, as well as people who are active in the nephrology field. Everyone has been able to contribute, and that’s what makes it a truly national Decision Aid.’ According to Parent, this broad national foundation is also one of the most important reasons why implementation has been so successful across all these hospitals – many of them outside Santeon. Van den Dorpel also sees training as playing a crucial role in successful implementation, particularly the training offered to everyone on shared decision-making and use of the new tool: ‘During the training, you have a consultation with an actor who listens, observes, analyses and communicates extremely well. This actor, in a sense, “coaches” you on how they would like to be approached – and that is incredibly valuable for having better conversations in the consulting room.’

‘Just a tenner’

Van den Dorpel does, however, see one barrier to large-scale implementation: ‘It comes down to funding. The Decision Aid costs around ten euros a day for a hospital. Health insurers say hospitals should pay for it, because it’s “only a tenner” per day. The hospitals, in turn, point to the insurers. It’s a difficult discussion, and I hope it’s one we can resolve in future.’

Further development

Work is currently underway to further develop the Decision Aid, with scope to expand the data and information on conservative care. In addition, the team is exploring how existing decision-support tools in kidney failure care, such as the visual consultation card and Nierkeuze.nl, can be integrated into the information and decision-making process. Nierkeuze.nl is an initiative of University Medical Center Groningen (UMCG), where “patients like me” data is made accessible for patients who are eligible for transplantation. In particular, this transplant-related information is an important addition to the Decision Aid.

An evaluation study is also ongoing to understand why some patients who receive the Decision Aid do not go on to use it. Van den Dorpel concludes: ‘In future, we may also be able to develop a version specifically for patients with lower (health) literacy.’

Ready to start using the Kidney Failure Decision Aid?

The Kidney Failure Decision Aid is designed for people with chronic kidney disease who are starting the education and counselling process for renal replacement therapy. The Decision Aid covers the options of kidney transplantation, peritoneal dialysis (PD), haemodialysis (HD) and conservative care.

Successful implementation

In all participating teams, the Decision Aid has become routine within 3 to 9 months. With our implementation package, we make it as easy as possible for your team.

About the Decision Aid

The medical content is based on current scientific evidence and the multidisciplinary guideline on chronic kidney disease.

Would you like to introduce the Kidney Failure Decision Aid in your hospital? Or are you curious about how the Decision Aid could support your organisation? Feel free to contact us! We’d be happy to tell you more.

The Kidney Failure Decision Aid is an initiative of Santeon and ZorgKeuzeLab, developed in collaboration with the Dutch Kidney Patients Association (NVN), the Dutch Federation for Nephrology, Nieren.nl, Domestico and Dialogica. 

ZorgKeuzeLab has been part of Enovation since February 2025.

This article is taken from Santeon’s publication on the Outcome Indicators pilot (Experiment Uitkomstindicatoren)