Survey closing soon

Hi Everyone, the survey is coming to an end soon. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Survey - http://ledderhose.blogspot.com/.../ledderhose-patient...

Please do take part and help gather some data on Ledderhose and its treatments.

Survey and Focus Group for US Ledderhose patients

Hi Everyone, the survey and focus group did not get as much interest as we were hoping. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Survey - http://ledderhose.blogspot.com/.../ledderhose-patient...

Focus Group - http://ledderhose.blogspot.com/.../ledderhose-virtual...

Please do take part and help gather some data on Ledderhose and its treatments. Equally interested to hear in the comments why people are not taking part / completing the survey.

Ledderhose patient Survey

Posted in partnership:  Please consider filling out this short survey about your experiences as a person affected by plantar fibromatosis. This survey is being conducted by ICON plc on behalf of Endo Pharmaceuticals Inc., which is conducting research on an investigational treatment for plantar fibromatosis, to better understand the experiences of people affected by plantar fibromatosis in the USA and how it impacts their lives. It should only take 10-15 minutes and you can enter to win one of three ($100) gift card prizes: https://s.surveyplanet.com/0m6ytm4u

Patient Survey Results from 2015

I mentioned recently that I wanted to do another patient survey, this time Ledderhose specific and probably focusing on demographics, risk factors and patient opinions on the treatment options they have received. I plan on making sure that any survey would be better planned in terms of how to perform the data analysis, something in my day job as a database developer I have to think about a lot. 

Here is a throw back to the 2015 symposium where I presented on the Ledderhose portion of the survey. 

International Dupuytren's Symposium - Day 2 - afternoon

Radiotherapy:

Prof S:

Looking at the whole body, look for feet, shoulder, privates, and hands not each thing as an individual item.

Radiotherapy can prevent progression in non-cancerous tumours and there are many different fibroma conditions. The radiotherapy impacts both proliferation and inflammation and this is how it can work on DD / LD. So radiotherapy can impact the cells as they are proliferating so quickly that the radiotherapy causes DNA damage that causes them to go into an apoptotic state rather than continuing to replicate.

TGF-B is very sensitive to radiotherapy and is known to be involved in the development of the cells from stem cells to postmitotic state PMF. This has been shown in science journals and cells basically are forced to skip the step in which they are proliferating and in which they cause DD.

Patients that are progressing, so therefore have active DD / LD are those that can be used to determine if patients should be treated. To be clear radiotherapy cannot be used in the latter stage of the disease, but can it be used post-surgery to prevent it entering the latter stages again. For the above to work we need to know what is progression so we can determine what is the right course of action. Increasing symptoms, cords, nodules itching etc are good signs.

If radiotherapy is used at an early stage it can delay or even stop progression. Published data shows that there are some responses to this in the different stages of DD and the later stages of DD should not be treated with radiotherapy but in the initial stages there is a good response to radiotherapy, especially in stage 1.

There have been several different techniques as to what is the best, and comparitive studies show they work but the favourite is 3x5gy done twice over 2 different weeks separated. Random between 2 schedules and controls

3 groups - 0 gy, 21gy (7 days in a row) or the now standard 30gy treatment.

No difference between electons on ortho-volt. There were no difference between the groups in terms of other factors.

20% of patients had a remission

53% were stable  in all RT patients.

Only 8% of patients in the 30gy group went on to have surgery..

Surgery is possible after RT with no extra complications. 12 week break is standard. Radiotherapy with lower doses does work if patients are concerned but it doesn’t work as well.

Radiotherapy used post op in patients with DD in PIP joint.

Ledderhose results skipped!!!! This was due to time constraints so I understand even if I am annoyed.

In cases of Ledderhose 80% of patients see reduce of symptoms and can be done post-operative and can be considered after multiple surgeries. There are several patients that have relapsed and in a different region they are happy to repeat, if there is a relapse in the same area then there can be a third week but going on beyond that is not great.

One key thing is that the dose is above 2gy, so 3gy x 5 or 5gy x 3 can work.

This was a very interesting talk and I knew most of it but it was great to hear the discussion between the surgeons and Prof S, his answers were mostly good.

Next was my talk, gulp.

Overall I think it went well and the basic results that I commented on were:

There is a very high number of female patients, in fact more so than in women and this could be real given the degree of deviation from the norm, however it could be a limitation of the survey, should take into account for the book how many patients have been self-diagnosed. In my experience there is a higher number of women, one doctor commented that many women who think they have nodules have hammertoe and many men who do not think they have Ledderhose in fact do have it. In hindsight I would argue that most of the patient participating in this survey are knowledgeable and most have Dupuytren’s so have probably been checked for Ledderhose, or at least should have been, so if the numbers are biased then it is because doctors are not checking up as they should.

The usual conditions are related.

Radiotherapy is the best treatment option as far as patients are concerned for Ledderhose. No other treatment option even comes close and no doctor even questioned this result. I got in my point about the lack of Ledderhose information and the lack of talks that even consider Ledderhose over the last 2 days...

After this point I did miss the next 2 posts in a post talk buzz but both Dr Bojaj and Anna both said well done on the way back to my seat which was nice.

Have to admit that despite nothing really being on the line for me my heart was pounding and I was a little nervous (though not much really) and I think this is because I wanted to do everyone proud, everyone who has taken part in the survey deserves me to put their point of view across. If anyone would like a copy of my powerpoint presentation then just ask, happy to provide. Certainly if you have Ledderhose then the graph on the treatment options is worth taking to any doctor you see that doesn’t approve of radiotherapy.

The next talk I have notes on is the one on Peyronie’s. To be fair this is probably a talk you can avoid watching, unless you like seeing surgery pictures and you can guess what they look like. Also mentioned the use of Collagenase on the treatment of this condition.

I am not sure what the last mini session is on but think it is mostly going to be 2 interactive sessions on research, first science research and then clinical research.

I will post this as an update now as I am unsure whether I will make many notes on the last session as I am not sure how relevant it will be to me, but I will do my best to give any input that I can and provide you with any output that I can.

Gender bias and trauma in Ledderhose and Dupuytren's

The large patient survey we are conducting has already revealed many interesting facts. One of these facts is that it appears that although Dupuytren's is more common in men (as expected), Ledderhose however appears to have a higher prevalence in women.

In order to investigate this further I have done a shorter survey with a lot of help from 2 Facebook groups.

Hypothesis and Method: 

The apparent different gender bias of Ledderhose and Dupuytren's is caused by the different lifestyles of men and women. Men are more likely to have jobs that will cause repetitive strain on their hands whilst women are more likely to put strain on their feet by wearing high heels.

Therefore this survey was to see whether there were more markers for trauma in the hand in Dupuytren's patients and whether there was more signs of trauma in Ledderhose patients.

The survey can still be taken here.

Results:

Graph 1: Percentage of patient groups with or without hand issue

The results in graph one are separated out into Dupuytren's, Dual and Ledderhose patients and within in group it is separated into men and women and those with or without a hand issue (trauma or job requiring repetitive use, pre-diagnosis). The results for Dupuytren's and Dual patients (all Dupuytren's patients) are quite similar in that over 55% of patients report having had a hand issue. Interestingly however if we use the Ledderhose patients as a control group we see a much lower percentage of patients report having had any issues with their hands. This suggests that within a Dupuytren's and Ledderhose patient group those with trauma to their hands are more likely to have developed Dupuytren's. 

Graph 2: Percentage of patient groups with or without a foot issue. 

The results of graph 2 are the same principle as graph 1 but the Ledderhose patients are on the left and Dupuytren's on the right. Here there appears to be no correlation between foot usage and the likelihood of Ledderhose development. 

Graph 3: Break down of levels of each foot factor.

Graph 3 is then a breakdown of each of the factors considered for the foot, this is to see whether any of these by themselves show a higher level of association with Ledderhose. Although there appears to be an increased level of high heel usage in female Ledderhose patients compare to Dupuytren's patients the difference and number of responses to the survey are too low to say if this is significant. Looking at the numbers I feel this is unlikely to be significant but this cannot be confirmed without more participants. 

As a final note I wanted to show how few Ledderhose only patients there are. This survey was shared on multiple groups and pages consisting of both Ledderhose and Dupuytren's patients, however less than 15% of patients have Ledderhose alone, 35% have both and just over 50% have Dupuytren's. This data matches that expected based on the large survey being conducted and it will be interesting to see whether, for example, the current age of the Ledderhose patients is on average lower than those with both. 

Summary:

Dupuytren's patients show a higher level of hand trauma and or use than non-Dupuytren's patients, Ledderhose patients do not show a higher level of high heel use, trauma, running or high use of feet jobs.

News, results and another survey

Recent weeks have been very interesting. Although I have not posted many blog posts or particularly had many page-views I have been fairly active. Instead of my usual activities I have been trying to raise awareness, this is not something that is easy to do for a rare non-life-threatening condition however I have had some success.

I have had interest from 2 local papers, one is hopefully going to publish an article this week and the other one I will contact again once we have had sufficient time to see if a Dupuytren’s patient that has had Xiapex can be found. The other development is that I had BBC over to interview me yesterday and they are going to run a piece on BBC South East today, including an interview with Dr Shaffer and this may then lead to a post on the BBC website. How amazing would it be to have an article on Ledderhose on the BBC website potentially linking to this blog and Dr Shaffer’s website? They did make clear that this is only a maybe but that is still a better situation that we were in last week.

Hopefully the media exposure will not stop there and I can use this momentum to try and get something out there that doesn't just cover the South-East, any ideas or contact you have are of course welcome.

Don’t forget that the deadline for submission of patient information for the survey is fast approaching and if you haven’t already filled it out it would be great to have as many responses as possible.  esurv.org/?u=dupled 

I am still collected results for the following mini-surveys as well, it would be great to have more information on these to get a better understanding of any significance or not in the results:

Plantar Fibroma and Plantar Fasciitis

Actually look like that is the only one as the initial look into the blood types showed no real difference and doesn't look like it warrants further investigation.

Preliminary results from the large survey appear to indicate that Dupuytren’s, as expected has a higher incidence in men but conversely Ledderhose has a higher incidence in women (or at least more women with Ledderhose have responded). This doesn't surprise me as I have probably been contact by more women than men however it does give rise to an interesting questions, why?

I can’t remember the exact figures but it was something like 55:45 men women for DD and vice versa for Ledderhose, numbers this close suggest to me that it is not likely to be the genetic element that plays a role meaning it could be environmental.

Graph outline the total percentage of male and female respondents with either DD or LD

The classic example here would be trauma, in men the example is that the hands are injured during manual labour and careers such as working in a mine or using the large power drills are thought to have an impact, some people have even noted a high level of musicians in Dupuytren’s patients. So what could be causing this for Ledderhose that provides an increased risk to women?

I have tried to think outside of the obvious and I am willing to have suggestions however the only thing that came to mind was that women almost exclusively wear high heels and perhaps his could account for the difference. After all we are only looking for something to account for the 10% difference in Dupuytren’s, so it could be that (purely hypothetical numbers) 80% of Dupuytren’s and Ledderhose patients are not caused by trauma and therefore you have 40% women and 40% man. In the remaining 20% we then see the difference, where for Dupuytren’s trauma is more likely in a man so this leads to the 55:45 split in favour of men whilst in Ledderhose trauma to the foot is more likely in women so you get the 55:45 split in favour of women. Something that can be discussed much more in the future when all results are in however I would love to start asking patients whether they have had any trauma etc to see whether can find any relevance.

So here is a short survey so that we can look at this

Entries are also still open for the blog awards, you can vote for me here.

Progress on the Ledderhose disease patient guide is slow going, for some treatments I am still trying to get more people, mainly surgeons, involved but I am hoping that the end of next year is a realistic target if I find time to really get my teeth into it. 

I am currently collecting the results of the patient series for this month and hopefully will have them all ready for the weekend so I can share how everyone else is getting. 

Hope every one is finding something that helps their feet, for those in the UK be sure to keep your feet warm for the winter, I always find the cold makes it hurt that little but more. 

Association of Plantar Fasciitis and Plantar Fibroma?

Thanks to everyone on the Facebook group and the Facebook page I have results from over 50 patients on a small survey about plantar fasciitis. On the group we noticed that there seemed to be a high percentage of patients with plantar fasciitis and thought we could  have a quick look and see if the numbers added up. 

So as graph 1 below shows of all the respondents with Ledderhose 45% had plantar fasciitis, bearing in mind that reference 1 says that the average for the States is 10% this would appear to be a meaningful number. 

Graph 1: Percentage of Ledderhose patients with Plantar Fasciitis

On the patient survey that we are conducting (over 2000!!!! responses) frozen shoulder was only present in around 20% of patients and knuckle pads in 13%. This suggests that the above could be a true link. The problem is that the conditions could linked not because they are from the same genetics or pathways (as is thought to be the case with Dupuytren's and Ledderhose) but because one can trigger the other or just coincidence but as a former scientist I don't think that is likely.

Graph 2: Distribution of Plantar Fasciitis onset in Ledderhose patients

If we think about these 2 conditions a link due to proximity could make sense. Plantar Fasciitis is an inflammation and or swelling of the the same tissue as plantar fibromas form on. Plantar fibromatosis is the formation of lumps on this tissue, surely the formation of a lump that is not supposed to be there is likely to cause some swelling and inflammation?

So it could be that rather than patients having plantar fasciitis on its own what they actually have is early stage Ledderhose which presents symptoms highly similar to fsaciitis because of the additional strain put on that part of the body. The results shown in graph 2 indicate that 80% of patients that had the plantar fasciitis start either at the same time or before the Ledderhose which is what we would expect if one was a factor in the other condition. 

On the Facebook page I also had a comment making a good point. The point being that potentially more patients with Ledderhose could have this condition but it has not been diagnosed as any pain etc is being put down to the Ledderhose. This is potentially the case but how can we know? I know that I was told that pain with Fasciitis is when you first get up and first start walking whilst (at least in the initial stages) the pain with a fibroma is likely to build up over the course of a day and get worse.

The results of this small survey are clearly not conclusive however it is certainly interesting that such a high number of Ledderhose patients have this condition and of those that have it most get it either before or at the same time as the Ledderhose.

References:
Reference 1: http://www.aafp.org/afp/2005/1201/p2247.html

Progression of Ledderhose disease

Below is some information that a visitor to the blog felt was missing. They said they had some information on it and they were happy to write it up. All information is posted with their permission, in fact they wrote it for the purpose of me posting it. 

It is true that I do not have much information on the progression of the disease, this is partly because, as you can see below, there is not a huge amount of information out there and secondly because I started the blog looking at treatments as that was the stage as I was. So for all of those that are new to the condition you may find the information below interesting to read. I felt that the paragraphs below were not enough to warrant a complete post so I conducted a small survey to complement the information. 

There is very little statistical information on the potential progression of Ledderhose Disease (LD)/Plantar Fibroma (PF).  There are individual disease trajectories provided by individuals on various patient forums. These patient histories can not be properly weighed as indicative of the normal course of the disease because there is no broad sampling of patients, no regular follow up, no quantitative measurements.  Therefore, the reader does not know if these patients are outliers or the norm.  In addition, there may be completely fabricated patient histories that have been authored by unscrupulous people preying on the fear and desperation of patients to sell their products.

The most rigorous published scientific studies that I have found on the LD have been performed by German researchers who were investigating the effectiveness of radiation therapy on Dupuytren's Disease (DD) and Ledderhose Disease(LD).  What is of most value in these studies is their use of a control (untreated) population.  For example, Seegenschmiedt[1] reported that for a control patient population of 47 people with 67 affected feet with minimal symptoms, 6 year average time of observation, minimum observation time of 1 year, 10 feet (15%) had a spontaneous remission, 34 feet (51%) remained stable, and 23 feet (34%) progressed and required treatment.  

These data are quite remarkable as they indicates that for a large percentage of LD patients  (66%), the expected disease trajectory is stability or regression for a non trivial period.  

I wanted to complement this information with anything extra that I could find, this included information from a patient that contacted me around that time. They suffered from Ledderhose and despite having nodules bigger than mine they did not experience pain. I do think that up to a certain point the size of the nodule is not the problem, it is the location and depth under the skin and whether it hits a nerve. Once it protrudes significantly out of the sole of the foot this can then cause issues based on the size of the lump (that is all just my opinion and thoughts but is based on the size of the fibroma not necessarily being related to the pain caused, which as it turns out is the case in the survey).

In order to gather more information on this I conducted a small survey which revealed some interesting results. 

Participants were asked to rank from 1 to 10 (10 being most painful) their condition from year 0 (diagnosis) up until now or year 30 (only 1 participant had had the condition for 30 years). Below I have 2 tables showing some of the results. 

Change	Num Occurrences	Comment
-10	0
-9	0
-8	1	*Year after RT treatment, no later pain increase
-7	0
-6	1	*Year after RT treatment, no later pain increase
-5	3	*all 3 after surgery and again increased
-4	0
-3	1
-2	3
-1	14
0	107
1	55	*High number of 0/1/ 2 suggest that progression is normally slow
2	19
3	7
4	7
5	3
6	3	*But over 1/2 of respondents experience a sharp increase
7	1
8	0
9	1
10	1

Table 1: Column 1 shows the change from the previous year, column 2 shows the number of years in which this change occurred and the third column shows a comment. Colouring is used to group results together.

Avg Max pain
2.28	Max yr on yr diff 2
7.22	> 3 year on year diff

Table 2: The average max pain for patients split by those that report a max change year on year of 2 and those that reporting having a change of greater than 2.

Table 1 shows that in most cases year on year there is little change in the condition however 50% of patients experience at least one year where there is an increase of 3 or more. When used in conjunction with table 2 this shows that those patients that experience a large jump are more likely to have significant pain. I have not calculated a number to show this but this is not simply due to an increase in the number of years a patient has the condition but it is that those with high levels have pain have had a large jump and not a gradual increase. In fact with only 1 exception the highest pain level reached by someone someone without a large jump was 3 (the exception being level 8).

Several patients report large decreases in pain, the 2 largest pain decreases were both as a result of radiotherapy. There were 3 patients that report a minus 5 in pain, all of these were because of surgery but in all 3 cases the pain then rose again. In no patients did the condition naturally regress year on year by a significant amount when there was no treatment involved. 

The above information and the rest of the results are summarised below. 

•  The size of the nodule is not proportional to the amount of pain
• Age of onset does not impact on progression
• Male or Female does not impact on progression
• Generally when gets bad seems to progress quickly
• It appears that without a large increase in pain you are not like to be experiencing too much pain
• Significant decreases have been observed post treatment with radiotherapy and surgery, after surgery pain rose again.

Of course to get these results I arbitrarily chose a jump of 3 as being large. I did chose this before analysing any data to try and avoid bias. Also this survey did not have many answers as it was just an initial survey which may help in the future development of a more comprehensive survey on the subject or a database to collect patient information. The results in the summary are all results which were clear from looking at the data and no numbers or graphs have been provided but I can make upon request. 

Below are some examples of patients pain levels over time. 

(1) Radiotherapy for primary or recurrent morbus ledderhose: 12 year long-term outcome of a prospective phase 2 trial. M. Heinrich Seegenschmiedt, Etienne Hanslian, Mark Wielpütz

Patient Survey

I am happy to announce that in association with the International Dupuytren's Society and the British Dupuytren's society we are running a patient survey. 

The aim of this survey is to collect as much information as we can on patient experiences with different treatment options for Dupuytren's and Ledderhose and to see whether, as some examples: 

• We can confirm the increased risk seen in those that drink 2+glasses of wine a day (see Lanting et al, 2012). 
• See what age people develop Dupuytren's / Ledderhose and is this age younger in those with a family history. 
• Are patients happy with the treatments they have been given? 

That is just some of the useful questions that we hope to be able to add some patient data to, however we can only do this if we have a good turn out, I would ideally like a joint response (from DD and LD patients) of around 1000, this is a lot to ask but these are the sort of numbers that are used in medical publications and it would be great to be able to compare our numbers to theirs. 

Importantly, here is the survey link

Survey of Ledderhose treatments

We have recently done a survey at the BDS, well we have started one and we are hoping for lots of Ledderhose and Dupuytren's patients to take part, you can go here to take it. So far we have had 90 participants which is better than I was expecting but worse than I was hoping for, a couple of hundred in total maybe ambitious but would making the data more useful. I think longer term it would be great if we could come up with a more definitive and useful survey and ask doctors around the world, though mainly UK (seeing as it would be a BDS thing) to send them out when they do a 1 year review with their patients. 

Still our initial survey was looking at risk factors and treatment options. There was nothing too obvious from the risk factor questions. But people had quite strong opinions on the different treatment options. Below I will only show the results for the response for Ledderhose patients but to see the full set of results so far please go to the BDS Blog.

The above graph shows the three different types of treatments that Ledderhose patients had had, Radiotherapy (blue), Surgery (Green) and Steroid injections (Orange). The first two bits on the left show whether the conditions come back or not, the middle columns shows the average time before it comes back and then on the right are two columns showing whether the patients would recommend the treatment or not. So as you can see: 

• In surgery patients (7) it came back in 5 patients at an average time of 2.5 years. Of those 7 patients only 1 would recommend and 5 said to avoid surgery. 
• For radiotherapy there were also 7 patients. In no patients did it come back and all 7 patients would recommend it. 
• There was only 1 steroid injection patient, they did not have it come back (note that I did have a steroid injection and it did come back but didn't think of it as a proper treatment so didn't include it in the survey) and they would recommend that treatment.

Overall the above data, although from few patients, seems to back what I have seen in the patients that I have interview, that being that the option of surgery is not a great one but that having radiotherapy is seen as the preferred option for a lot of patients.