Pain – a PD issue that deserves more focus and systematic data collection

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Koen Van den Brande CSO

A study on Pain related to PD

Observes in its introduction …

And yet … patients seem to think it matters

Pain was certainly high on my personal list of PD priorities – in particular because of how difficult it was to persuade my neurologists to recognise some of my many types of pain as even PD-related.

And so it should be no surprise that details of pain and ratings featured prominently in the specification commissioned to establish feasibility, prior to presenting our poster at the WPC in Kyoto.

The Kode Health PLM specification contains the following exchange …

Prior to my DBS, I had a particular instance of effective feedback resolving an unusual pain issue, which was incorporated into the spec as follows …

This level of simplicity is necessary for aggregation into an overall PLM view, but needs to be underpinned – optionally – with a more specialised scoring mechanism …

My painful feet problem had been resolved unexpectedly by a physiotherapist suggested I try ‘stomping’ my feet. Not immediately obvious and a bit counter-intuitive, given that I could barely stand – but it worked as if by magic – the ‘terrible’ pain turned into a warm  tingling sensation before disappearing all together. I remember being keen to pass on the good news to other PD patients … but how ?

Never mind this particular pain did not appear on anyone’s standard list – but how to rate it ?

In Kyoto, we were advised by Walter Maetzler, deputy Director neurology, University Hospital Schleswig Holstein and co-chair of the Technology task force of the PMD Society, to try and make sure we used a widely recognised scale.

The Universal PD rating scale (UPDRS) has only one score for pain …

By comparison the ‘brief pain inventory’ proposed by the Charles Cleeland Pain Research Group in 1991 …  

… recognises specific ‘location’ of pain as important to capture …

But not the severity of each different pain …

It adds ‘impact’ to the overall picture

The more recently developed Kings PD Pain Scale (KPDPS) adds ‘frequency’ and ‘type’ to a more comprehensive picture of PD-related pain.

But none of these scales appear to deal, as yet, explicitly with ‘neuropathic’ pain. A ‘ghost’ pain which is easily identifiable by PD patients, as pain that comes and goes – unlike its real counterpart – with PD medication…

Like the pain in my feet pre-DBS and the ‘sprained wrist’ pain in my right hand, post-DBS.

Neither does it say anything about the effectiveness of different treatments – exercise, medication, diet or even DBS settings, for example.

Hence we decided that Pain and capturing lots of data about it, was a worthy subject deserving of our initial development focus.

I look forward to discussing this focus and validating our approach, with Professor Ray Chaudhuri at King’s College in London – the lead author on an international study on KPDPS, when I meet him in April.

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