Feedback on our online PML information

Thank you very much to everyone who gave feedback on our PML information. As we mentioned in the previous post, we are hoping to get as much feedback on it as we develop it and other information resources. We really value your comments.

We had alot of positive comments on the aesthetics and usability of the tool being clear and simple to use. For this we must thank the Barts MS Advisory Group who very patiently tested it and the lumbar puncture information.

Other comments were around what information is presented where. For example, could we state how fresh the data behind the statistics is?

Response: We mention this in the footer at the bottom of the page. We could move this to the header at top of the page to make it more prominent. The figures are evolving, so it may help to emphasise the importance of this.

Another comment was around the single purpose of the calculate (i.e. it’s like having a calculator that only multiplies 412 x 6.3)

Response: The calculator takes into account variables that change over time, so your risk today could be different from your risk in 3 months time. The published figures from Tysabri are also evolving and these are also reflected in the calculated risk. Also, we wanted the page to be more than just a calculator. For those new to Tysabri, it introduces the drug and presents both the benefits and the risks and what happens if you go on to develop PML. 

A couple of reviewers said they preferred the paper version as it makes it easier to see the possible range of risk and where your own risk sits.

Response: After calculating your risk on the online version, click the button “Compare this with the other risk factors” to see a graph that allows you to compare the risk factors over time. We didn’t want to overwhelm the visitor with too much information. So by default, this graph is hidden, but is there if you want to explore further.

Regarding the graph, some comments said the graph needs to compare the different titre levels, to understand the impact of changing titre levels and also get a context against the highest risk with respect to titre level.

Response: We could show all the titre levels on one graph, but from our initial round of feedback, people found the graph then became overwhelming and contained too much information. You can slide the titre level slider and the graph will update in real time if you want to understand how it affects risk.

Another main comment from the feedback is the misleading nature of it being described as an “App” in the previous post. It’s really just a webpage. There is nothing to install or download. Visit the link in any modern browser and you should be able to view the information, whether it is on a phone, tablet, laptop, pc.

The ability to use it on multiple devices was one of the main objectives when designing it. Also that your understanding of the information should not be limited by the device you happen to be viewing it on.

If you have any further comments you can still send them to us.

About the author

Alison Thomson


  • I still have not found any information on how frequent an MSer should test for the jcv antibodies if that Mser is JCV-positive…
    What is the general guidelines and do all hospitals follow the same route?

    I look forward to hearing from you

By Alison Thomson



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