Onno van Schayck, Professor of Preventive Medicine at Maastricht University, was principal investigator of the project E-manager Chronic Diseases and applicant for the IMDI grant. Annerika Slok, Assistant Professor, Faculty of Health, Medicine and Life Sciences at Maastricht University, has now taken over as principal investigator.
‘When a healthcare provider asks a patient with a chronic illness how things are going, the standard answer is: “good!”, Van Schayck begins his story. ‘The care provider then spends 5 to 10 minutes trying to figure out what is going wrong. That is by definition the case, because the patient has a chronic illness. That is why we developed the Disease Burden Meter. Using a simple questionnaire that can be completed quickly, you can use a few generic questions and a number of disease-specific questions to map out the disease burden that the patient experiences.
The next question is ‘What motivates you to work on, so that you have less disease burden?’ Then you click on a red balloon together. Generic advice will then appear based on national and international guidelines from general practitioners and specialists. This advice is then converted into a concrete individual care plan. For example, not just ‘move more’ but concretely; Walk the dog at least 3 times a day. The patient can then start working on it, and research has shown that the change is almost always positive. And that motivates the patient to start working on his next complaint.
But that does not mean that the patient will always and automatically continue this for a number of weeks. Self-management is complicated; you actually have to do that with supervision. That is why we are now also working on the development of an E-supporter. Online support, for example via a smartphone. It’s a kind of built-in coach. Walking the dog for 10 minutes 3 times a day, you can easily support this online. If the Disease Burden Meter communicates with the E-supporter, you can determine, just like the pedometer, whether it is happening. If it doesn’t happen, you can send positive messages to help the patient achieve the goal and then persevere.
The main idea of this project was to see if we can expand the Disease Burden Meter to other diseases. A disease burden meter for chronic conditions such as asthma, diabetes and heart failure. Because more and more people have multiple diseases at the same time. And many lifestyle adjustments that are necessary to prevent or deal with diseases are similar. And an adjustment for one disease has consequences for the other conditions. It is then logical not to reduce a patient to his illness, but to fully involve the patient. And also, not to use multiple instruments for all kinds of separate diseases, but only 1 instrument.
The Disease Burden Meter: Because Saying “Good!” Isn’t Good Enough
Let’s face it: the next time you step into a doctor’s office and the healthcare provider asks you, “How are you feeling?” and you hear yourself dismiss it with a chirpy, “Good!”—let’s just admit, you might be lying. Because really, who wants to look like they’ve devoured the entire catalogue of miserable experiences that come with a chronic illness? Onno van Schayck, a bona fide Professor of Preventive Medicine over at Maastricht University, got so fed up with this charade that he decided to do something about it. Thank heavens he did, or we’d all still be playing the world’s worst game of medical charades.
The Brainchild of Breaking the Cycle
In an audacious move—or perhaps a miraculous stroke of genius—Van Schayck and his team introduced the Disease Burden Meter. Or, as I like to call it: “Let’s Get Real, Shall We?” This nifty tool allows patients to spill the beans on all the lovely inconveniences that come with chronic ailments in a way that won’t take the dentist’s office equivalent of 5 to 10 minutes to weed through. Instead, you tackle a quick questionnaire, featuring a medley of generic and disease-specific questions, designed to serve a buffet of truth about how you actually feel. And let’s be honest; we all want our healthcare providers to have their investigative hats on, don’t we? Sherlock Holmes-style without the absurd pipe, of course.
But Wait, There’s More!
Once you’ve bared your soul for the day, the tool doesn’t stop there. Now comes the pièce de résistance! You get to stroke a red balloon—yes, you read that right—while contemplating what motivates you to minimize your disease burden. What does the balloon do? It magically releases generic advice shared by GPs and specialists around the globe. But it doesn’t stop at “move more”—oh no, darling. We get practical, telling you to walk the dog not once, but thrice a day! Don’t have a dog? Rent one. Just kidding; animal rights activists may not appreciate that suggestion! Anyway, research shows that focusing on these small, achievable changes evokes positivity in our lovely patient populace.
The Reality of Self-Management
But let’s not get too carried away with our balloon-laden dreams. The road to chronic illness self-management is about as straightforward as assembling IKEA furniture—it’s complicated and nearly impossible without an instruction manual or supervision! That’s why our hero researchers are working on creating an E-supporter—a digital buddy that’s almost as good as a good friend. Imagine receiving handy reminders and encouragement directly to your smartphone about walking the dog for ten minutes, three times a day. Talk about guilt tripping without even having to guilt-trip!
Expanding the Burden Meter: The Sky’s the Limit!
But what’s the overarching aim here, you ask? Well, Van Schayck and his team aim to broaden the outreach of the Disease Burden Meter to cater to other chronic afflictions like asthma, diabetes, and heart failure. Because, let’s face it, people don’t just collect one ailment; it’s more like Pokémon these days—gotta catch ‘em all! Managing these illnesses could actually be a piece of cake—if only the cake wasn’t gluten-free, sugar-free, and a constant source of dietary distress. And here’s the kicker: when you adjust your routine for one condition, it reverberates stunningly across the others as well. So why not use a single tool instead of a toolbox overflowing with different instruments for every malady? Now that’s just common sense!
In Conclusion: Get On Board!
It’s time we stopped treating patients as mere walking diseases and started involving them in their care. With the Disease Burden Meter, Van Schayck’s project promises not only to make lives better but to ensure we all agree being “good” just isn’t cutting it anymore! So here’s wishing we can all graduate from the “chronic illness dictionary” of cover-ups to an open discourse filled with balloons, dogs, and a whole lot of progress!
