....
Most recurrence will happen in the first 2 years, hopefully this means that I am past that point. They also look at patient satisfaction in terms of hand function in terms of Dupuytren’s patients, I think this is a great measure to use when treating DD patients although it does mean that you are relying on patients having similar goals and would love to see a similar study for Ledderhose. How many Ledderhose patients are happy with foot function after radiotherapy and surgery etc. For DD they did look at degree of contracture and other variables both pre and post operation to see whether there was any linkage between these and patient satisfaction which is great to be able to use as a predictor for success in surgery / PNF.
Much higher number of men were happy with their degree of function compared to women and nothing else was related (well may have been but i missed it). Not surprisingly those who had a more successful surgery with less complications were more likely to happy. Men were 2.5x more likely to be happy, this seems amazingly high and it does make me wonder about thinking more of the female side of this. Could the high numbers of men in most studies, including surgery, bias the results to be more favourable.
A fair amount of this session was on patient satisfaction and how to measure it etc, this was stuff that was not overly relevant to me, it is interesting to see that around 25% of patients do not think that the output given from their responses to surveys actually reflects how they feel about how their treatment went. Personally for me the most disappointing thing was the poor patient response rate, around half didn’t fill it out, come on patients when a doctor gives you a questionnaire fill it out you will be helping all the other patients out there by improving the results of studies.
We then moved on to looking at PNF a lot. Good for me as my Dupuytren’s knowledge is severely lacking as I am very focused on Ledderhose as this is what I have and know well so I haven’t looked at PNF. The first talk was by Gary Pess and his thoughts and tips on the use of PNF and Collagenase, this was interesting as he was someone I was chatting to for an hour or so at the dinner the evening before! Great to have made these contacts and hopefully can put them into good use in the future.
He prefers to treat early with minimally invasive options. Good to hear of a doctor that says that patients should be treated early and aggressively even if RT wasn’t mentioned. After all if treated early you are getting in there before they are losing too much function and he said that it worked better in terms of time until it comes back. Interesting to hear that, but I guess you are destroying a higher percentage of the disease tissue? I mean if you have a huge lump you will damage / remove 10% to break the cord, if you treat early you might destroy more like 50% and therefore it will take longer for the disease tissue to recover. Hopefully I can get some notes done on this to ensure that you can check your doctor knows what he is going, Gary Pess has been going this for a long time so if you are going to have Collagenase or PNF then I really recommend watching the video of this presentation as there is so much great information.
PNF in recurrence of Dupuytren’s - PNF rates can come back up to 85% of the time and the question was can it be done again and again to avoid having to have full surgery. PNF postones limited fasciotomy for around 4 ½ years and up to a fourth procedure it seems to work as well as a first procedure, but after this has reduced usefulness.
Dupuytren’s Treatment - Where are we now:
Are there too many options, they all have different merits and drawbacks and from the start radiotherapy was at least mentioned along with a few other options we had yet to hear about. It was interesting to get a brief history of Dupuytren’s and gives a good overview of it for anyone that hasn’t heard it before.
Steroids - Used in nodules but not cords
Radiotherapy - He didn’t give a good overview of this, just said radiotherapy can cause fibrosis. Just shows not looking at the data and talked about burning holes in hands as with breast cancer, the doses and treatments are different. I can just imagine the reaction that the active DART members are going to have when / if the watch this presentation on YouTube. .
NF and Collagenase - Not for super advanced condition.
Chemotherapy and Gene therapy - Didn’t go into detail
Also quoted the condition as being painless, from what I have heard about DD this is not always the case. Overall the talk was good but it was clear he was a surgeon with strong surgeon views and as I was sitting through it I was hoping that some of the RT doctors for example might be able to question him at the end.
Things then went into a bit more detail and started looking at steroid injections (they can actually be useful when used with NA/PNF) and can delay the recurrence of the condition.
There was another talk on PNF against collagenase (a very active area at the moment, probably due to the money being pumped into Xiapex) and in this case they found no real difference between the two different groups.
Comparison Xiapex with Limited fasciotomy and again there was no real conclusion.
There was a talk on the TEC technique and whilst it sounds like it could be interesting I recommend watching the presentation as the presentation was do at a very rapid pace, I think they were reading from a script and reading it quick! But the results suggest good functional results. I hope I am not being too critical of the speaker given that I will be standing in the spot later today. To be fair she finished bang on time and would have overrun had it been delivered at a slower pace, I guess less is more.
At this point I did start to struggle to keep up with the reports to some extent. I guess a combination of it nearly being lunch-time, having done a 6 mile run and thinking about my talk all played a part. Still I will do my best.
The next talk was looking at the microanatomy of the hand / finger. They are looking at some fibres that are all intertwined in the forming structures which is of course of great interest for these conditions. The idea being that these structures could form cords, I suggest if you are interested that you look up the speaker giving the conference from the notes.
Next
What is the natural course for patients with primary DD came up next. The idea was to track patients every 6 months, nodules and cords (no mention of looking for Ledderhose??) and they have done this for 2 years at the time of the talk. Had around 250 patients with around 16% of fingers showing contracture. They found that over time the patients stayed stable in terms of the size of the nodules and cords and the angle of the fingers. The changes looked at were minimal so they did some fancy analysis that I didn't understand. Basically there were patients that were stable, increased in disease and decrease in disease and that the decrease was cancelling out the increase (I think) when looking at the numbers as an overview.
Basically they showed that in some cases the condition is not progressive. Of course this is a factor for radiotherapy as if a patient is not going to progress then you do not want to treat with RT when it is not required. A valid point and every more shows that if we can find a marker to show it is aggressive then we know to treat early and perhaps with RT (of course depends on studies etc).
Then we started to go through some recurrence papers / talks. A big problem is that you compare different papers and with DD there have been 40 different descriptions and you can vary your data to show recurrence from 2% to 86%, an extremely important report to get more consistency. After all there are many people championing radiotherapy on the claims it has less chance of coming back but perhaps it uses a different description. Certainly check out this as they had a group of experts and came to a consensus as to what we should call recurrence. This was the talk but Ruuf Selles. One aspect I didn't like is that it was, at least to some extent, on the functional aspect of degree of contracture on the hand. Surely the disease is there if there are nodules and cords, certainly this has no application to Ledderhose where you don't get contracture. I agree that it may not be important for DD where the degree of contracture and therefore function is the most important thing but it just would have been nice to acknowledge the nodules and cords as this is when patients (or at least I would) go to my doctor and therefore I would say the disease has come back. It was not included because (surprise, surprise) the presence of nodules and cords is not an indicator for surgery and some treatment release the fingers but do not remove the cords etc.
Does skin grafting reduce recurrence. As best I could tell it does but there are of course other factors that need to be taking into account when using this.
Later on:
Looking forward to this afternoon as I have seen that Professor Seegenschmiedt is doing a lecture on radiotherapy and he includes a section on Ledderhose, can’t wait and look forward to the discussion of this section as all the surgeons surely cannot deny proper clinical data from him and the obvious results from the patient survey that I will be presenting.
Overall another good session and for me second favourite to yesterday morning.
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