Families' need for harmonized care

In part two of this series, Dr. Justin Abbatemarco, Dr. Marjo S. van der Knaap, and Romy J. van Voorst discuss the patient management card and how patients should use it.

Show citation:

and Clinical Management of Vanishing White Matter. Neurology. 2025;105(11):e214320. doi:10.1212/WNL.0000000000214320

Show transcript:

Dr. Justin Abbatemarco:

Hello and welcome back. This is Justin Abbatemarco here with Romy J. van Voorst and Dr. Marjo S. van der Knaap. After discussing her article, Published Neurology Consensus Base Expert Recommendation for Diagnosis and Clinical Management of Vanishing White Matter Disease. Romy, I really want to talk with you about the patient management card. What inspired you to create that in this publication, and how should patients use that?

Romy J. van Voorst:

So what the main motivation was of the study was actually a previous study that we did before. And in this study, we looked at the impact of any short matter on unaffected family members. And we found out that actually many family members encountered clinicians that were unfamiliar with its disease or disease-specific management. And during interviews, we saw that there was an urgent need for moral harmonization of care and also symptom management because families felt like they are left alone with just their child and no guidance on how to go further. And we wrote these recommendations to help families better understand the diagnostic and care process so they can also participate in informed decision-making. So they can understand what kind of preventive measures they can take and whether or not this interferes, for example, with quality of life goals. So there are a lot of different recommendations families can take home with.

Dr. Justin Abbatemarco:

Marjo, anything else you want to add there?

Dr. Marjo S. van der Knaap:

Yeah, I think the management card also helps because they have a physical card when they go to consultation or to emergency room that they can hand over. It's an official publication. It's developed by the Finishing WebMetter Expert Consortium in combination with other experts in combination with patient advocates and representatives. And so it's really a sort of a guidance that cannot be denied. So it has some authority to it.

Dr. Justin Abbatemarco:

But I think it's a theme that applies to many neurological diseases, and addressing that. You do it really practically. And I agree, giving something more tangible for patients to present, especially to non-neurologists to help them give some guidance. It's an idea that we need to think about in clinic all the time on how we're interacting and supporting caregivers and when they're interfacing with the medical community at large. So I love what you guys have done here and to make us think about this more broadly. Thanks again for all your time and your work on this topic.

Dr. Marjo S. van der Knaap:

Thank you for having us.