Is Dupuytren's contracture a cosmetic problem?

Dupuytren’s surgery- elective or cosmetic, or necessary?
Some patients are being denied Dupuytren’s surgery because their CCG classes it as a "cosmetic" procedure, and therefore not offered on the NHS. This is a step down from "elective" even. So what is the difference?
‘Elective’ is any surgery that can be planned in advance. 'Planned' surgery would be a better name, as 'elective' gives the impression the patient can choose whether to have the procedure done or not, and in many cases there isn't really a choice; not if the patient wants to remain alive, mobile, able to live independently and to work.. And quality of life (and QALYs and ICERs are important in the decision making of what procedure to offer on the NHS), so these things should matter in the decision makings of the CCGs.
Elective surgery tends to have a medical indication.
In many cases elective surgery is needed to give the patient the ability to live a normal or near-normal life again, to keep working and be independent. Think of patients who need a joint replacement, in constant pain, unable to walk any distance if it concerns hip or knee.
Electives can be life saving, like cardiac bypass surgery or the taking of biopsies to reach a diagnosis. But also a condition that causes the patient mental health problems can (and in the opinion of many should) be classed elective, even if it is only to change appearance and not to increase body function.
Cosmetic surgery is not medically necessary except maybe for the patient's self-esteem. The patient chooses to have a procedure done purely to change their appearance for cosmetic rather than medical reasons.
Cosmetic surgery is optional, and not classed as "elective" even.
Plastic surgery is done to normalise appearance AND FUNCTION of the body part. https://www.ambrdfcs.org/patient-resources/cosmetic-vs-plastic-surgery/ Therefore plastic surgery by definition belongs in the "elective" group.
So where does Dupuytren’s surgery fall in this terminology?
Some CCGs are claiming Dupuytren’s is a cosmetic problem. Maybe it is, in the early stages. But that is not the stage when surgeons would operate normally anyway, the nodular stage is best not touched with a knife as you would risk exacerbating the disease.
What about at a later stage, when the finger(s) are starting to contract? Common guidelines are to operate at 30-40 degrees contracture at the MCP joint, or ANY PIP joint contracture. This is not only because of the problems these contractures will cause the patient, but also because the beneficial effect of surgery is greatest if done in those stages.
The problems Dupuytren patients experience everyday
At that stage, the patient will have functional problems. Gripping things, getting the hand in small openings (think purse, trouser pockets), wearing gloves (and cold weather is not good for Dupuytren’s hands- cold causes vasoconstriction causes poor perfusion, which is a risk factor in itself). Patients will be struggling doing their job in many cases, struggling using kitchen utensils, personal hygiene will become more difficult. Typing on a keyboard or using a computer mouse will not be possible anymore for some. Doing up buttons or tying shoelaces gets to be a problem. Looking after the (grand)children can become difficult, or even stroking them over the head with one or more bent fingers that poke rather than stroke.
Is this still a cosmetic problem, if it limits what a patient can do in everyday life, if the patient can’t open doors or a bottle of water, can’t hold the steering wheel of the car properly, can’t hold a toothbrush or use scissors to open a bag of pasta?
Dupuytren’s causes a functional deficit
Dupuytren’s is a functional problem, a physical condition that deteriorates over time, affects the use of one (or both) hands, and needs treatment. And that treatment in many cases is surgery. Performed by a qualified hand surgeon, to get the best possible chance of functional fingers again.
After all, being able to use your hands is not a question of cosmetics, patients want functional hands (or at least as much as possible) and will gladly put up with a scar or two if it means being able to put your hand (almost) flat on the table again.
That means Dupuytren surgery is plastic, and not cosmetic.

Peyronie's video

Prof David Ralph made a video for our charity to explain the different types of surgery available for Peyronie's Disease, and when each type is warranted. Watch the video here:

https://youtu.be/ZQml15fKpTs

Peyronie's news and DISC trial

A recent study has shown that men with Peyronie's Disease may be at higher risk of developing certain cancers. This is not good of course, but at least if we know about it, those men can be monitored for early signs and treated as soon as necessary.
Our trustee Birgir Gislason has done a post about it on his website. https://www.mypeyronies.com/peyronies-cancer.html
It is not really surprising, seeing having Dupuytren's Contracture has also been linked to an increased risk, in a study by Zyluk (2015) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3973858/pdf/1897-4287-12-6.pdf
So make sure you talk to your GP if you notice anything that might be suspicious in your body!

On a more positive note the DISC trial is starting, where the longterm results of surgery and collagenase injections for Dupuytren's will be compared. https://www.york.ac.uk/healthsciences/research/trials/research/trials/disc/
Anyone interested in participating please discuss this with your doctor.

Getting ready

We are getting ready for the BSSH days! I have bought a conference table cloth and a table runner (and after that found out you can get special conference table cloths printed), I have designed and bought 200 new leaflets, (and a big thank you to Iain Reid who made the logo look better!). We have two volunteers, Ian Ireland for the Friday and Stephen Jones for the Saturday - I can't wait to meet them!

The trustee page on our website now has pictures of all trustees, and tells you who helps in what department.

I am getting somewhere designing an 'aftercare and physical therapy after surgery' leaflet - ok, the name will need shortening a bit. I need to take some hand pictures to show the exercises, but where you need two hands for the exercises I can't take a picture as well, so I will find some help for that.

The weather is atrocious, but fortunately that is not our responsibility. It just means more aches and pains for a lot of people, and especially for those with Ledderhose who may have trouble walking anyway- please be careful!

News and another interesting article

Another good article has been published online, about the results of surgery for Dupuytren's. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010143.pub2/epdf   The main writer is Mr J N Rodrigues, it is part of his thesis study.

On Wednesday 7th Dec we are hoping to have the next trustee meeting, it will be partly face to face and those who can't come will try to connect via Skype. Our Secretariat Gemma has arranged it all, and it must have been a lot of work! Mr David Ralph has kindly offered the use of his office for it. It will be good to meet some people face to face!

We had the next meeting with NICE about the use of Xiapex, now we are waiting for their next decision. I have told them that in the charities opinion Xiapex is the last hope for some patients, and therefore we do not want a blanket ban, we will be happy with limited guidance. But we just have to wait and see now. The manufacturers were well represented, and NICE had one hand surgeon (one of our trustees, but I am not sure if he represented us or the BSSH) on a conference call. Thank you Mr Henk Giele for taking the time to join the post-appeal meeting!

The decision on radiotherapy is due soon, we will keep you updated for that. For now, have a good day, wrap up warm if you go outside!

Summertime

Time for an update, it has been a while.

Groningen: the conference was good, a lot of very clever people all discussing what they can offer patients and what research needs doing to improve the treatments. There are still distinct fractions, such as radiotherapists versus surgeons, but there was good conversation also between the groups so I hope the differences in opinion are getting less. After all we all want what is best to slow or halt the disease, never mind how it is done. Abstracts of the presented papers can be found online: http://dupuytrensymposium.com/program_2015.php  (scroll to the bottom) and the talks will be put on YouTube.

The Dupuytren's Foundation is hoping to set up a databank with samples from as many ppatients as they can get, to aid in identifying the cause of the disease. PLEASE HELP!! Go to this website http://dupuytrens.org/get-the-newsletter/  and register for the newsletter, they will let you know as soon as the study starts . It would mean having a bloodsample taken, that's all. Anyone with Dup's or Ledderhose in any country, please join.

Since then the website is being transferred, we found a good server but it means I can't update any pages untill the transfer is complete.

I have met up with Lorraine and Louise from Say Communications, Sobi has kindly agreed to fund a secretariat function for 2 days per month for the next 6 months, and Louise will look into funding, membership, a new logo, newsletters to GP's.. all these things we wanted for the BDS but did not have time to do. So all in all the BDS is moving forward. We have 350 followers on our Facebook page, and the Dup Ld and related conditions group is oding even better with 406 members.

All we need now is a cure!

Anna

Not so 'NICE'

 Nice has published their preliminary decision, NOT to allow collagenase (Xiapex) injections on the NHS, because their calculations said it is more expensive than surgery and the results may not last as long. https://www.nice.org.uk/guidance/indevelopment/gid-tag364

 The fact that the recovery is quicker, there is less chance of infection and less pain afterwards, it can be done without general anaesthetic (GA) whereas a lot of surgeons give a GA for surgery, it does not cause as much scarring so can be repeated easier than surgery.. All that did not make any difference, it is definitely more costly than needle release and marginally more so than fasciectomy (open surgery), especially if you assume all surgey is done under local anaesthetic as day case and because on average 1.1 vials of collagenase are needed you don't say that is eleven vials per 10 patients but you call it two per patient. We don't have much time to react to this statement (untill 28th November) , so please read through it and email or message us on Facebook wtih your comments. We need patients who are willing to be interviewed to explain to the media why they might prefert operations to surgery (not difficult to fathom!) so if you feel you can help: anna@dupuytrens-society.org.uk.

 Pretty please with sugar on people!

 I will be putting together a comment for NICE, and a press release that we will try to get on some news sites (how?)

 The fight continues, I know patients want a choice, not just to be told 'you need surgery!'

Meetings

Two days ago I met up with Mark Bell, a representative of Sobi who will be marketing Xiapex in Europe and Asia. He seemed nice, keen and had good knowledge of Dupuytren's and the other conditions Xiapex is being trialled or considered for. I am happy to say we have a Peyronie's patient on our side now, as Mark asked if we support patients with PD and for some reason I feel better letting men discuss that amongst themselves.

Sobi is a smaller company than Pfizer but no less committed, and the have some good ideas. They will keep us informed of trial results and published articles and can help finding surgeons who use Collagenase injections if a patient send us a query where to fine one.

 

Then yesterday was the next meeting with Nice, to discuss the finalised scope for Xiapex and the forthcoming multi-technology appraisal, what they want from us in the way of information and help, how they are going about searching for articles and calculating the improved QALY of patients, that kind of thing. I was impressed with the way everyone at Nice now understood the disease, and the meeting was fruitful.

 

We also send a letter to Bapras  http://www.bapras.org.uk/ last week asking them to review and update the information on their website about Dupuytren's. At the moment it states 'Surgery is the only treatment available for Dupuytren’s Contracture' and we would like that adjusting to mention the  different treatments that are available. We shall see what happens.

 

It's been a busy week, but it was constructive. Anna

Language is a difficult thing. I spend some time working on the website again yesterday, and the designer and I speak a very different language, even if it's both based on English. Web language and medical language don't have much in common. But  think we started to find a compromise, and have worked out how to refer to each webpage if I want him to change anything.  I don't say 'the page on Dupuytren's surgery' but just send him the internet link, that way we should both be talking about the same thing.

A big thank you to John who allowed me to use some of his post-surgery pictures on our site. It is always better to know what kind of wound or scar to expect, so it's not too big a shock when the bandage comes off.

Auxilium seems to have found a new European partner, a Swedish firm this time.  I had never heard about them, Swedish Orphan Biovitrum AB or Sobi for short, but being Swedish they may be familiar with the condition? We'll wait and see what changes they make to the advertising and marketing of Xiapex.

Initial Data from Survey

So today I had a chance to look through the 1st 90 sets of survey results, hopefully there will be many more. So the first graph below shows just that the average age of diagnosis for the survey group is mid forties and the max is 68 and the low was 12. I think that this combined the results for the second graph suggest either that we are generally diagnosed by the time we are 60 or that people over 60 are less likely to take an internet poll. Graph 2 shows an increasing number of people being diagnosed with age until they are over 59 when the number drops significantly.

The above graph, graph number 3, shows that nearly 40% of people taking the poll had the condition in more two limbs, about 30% in 1 limb and about 10% each in 3 or 4. This really just shows you have about 7 in 10 chance of getting them in 2 or more limbs. Interesting that it seems to be present more often in 2 limbs than 1.

The below graph show that percentage of people taking the survey who may be at risk due to each risk factor (blue). Note that for the family history result I look only at people who knew yes or no, interestingly this showed that over 60% of people had a family history of the condition. In red, as the UK had the highest number of participants, I tried to fine the rough UK average for each risk factor, this showed that there was almost double the number of smokers in the patient group compared to the UK public, but of course we do not know whether they were smoking before getting the condition or not. DD/LD patients seem to drink less than the national average and for the other there are probably too smaller number of people to say anything apart from there were more diabetes patients than I would expect from a random sample of 90 people.

 I then split the people with / without and unsure of family history into separate groups and looked to see if there was a difference in the average number of limbs in which the patient suffered. The numbers are too small to say if there is a difference and the unreliability of knowing the medical history of your family but the total average for all patients was helpfully exactly 2. For patients with a family history it was 2.2 and without and unknown were both 1.8. If we take the results for with and without family history at face value it suggests that those with a family history are at a slight increased risk of getting it in more places.

 There was no significant difference in the ages with which those with and without a family history get the condition, with there only being a few years difference in the averages.

 The next 2 graphs look at the same as the above but for smokers and non-smokers and basically smoking appears to make no difference to number of limbs or age of onset.

 Note that I know I have spelt NA (when spelt out in full) wrong but I didn't have the chance to fix it before doing everything and I am really busy this weekend.

Dupuytren's Treatments:

Interesting I next looked at the treatments the patients received. The highest amount of patients had surgery, interestingly it came back in 17 patients and didn't in 8 and of those that had it only 6 would recommend it and even those I was only asking what patients would recommend 9 people actually said don't get surgery. Typically it came back in about 4 years.

NA was not popular in terms of numbers, neither was physio but both had 100% success in the 3 patients that had those treatments, interesting and I would like to know how severe the physio cases were. Steroid injections had been used in 2 people, in neither did it come back but neither would recommend.

Xiapex stood out, although only 3 patients had it, in all it came back and inn an average time of only 1 year, 1 person still recommended and one said avoid the other said nothing.

Radiotherapy performed fairly well.with 5 patients have no disease come back and 2 having it come back in an average of 4 years but of the 7 patients 5 would recommend it.

 For ledderhose treatments there were not so many treatment options employed.

7 patients had surgery, in 5 it came back in an average time of 2.5 years, 1 person would recommend it whilst 5 said to avoid.

1 person had a steroid injection and it did not come back.

7 patients had radiotherapy for Ledderhose, in no patients has it yet to come back and all patients would recommend. Make what you want of that.

I still want to check whether the risk factors increase the chances of the diseases coming back, do if you have a strong family history have the treatments been less successful, etc etc.

Nothing conclusive and more data would be great and some potential trends still to look at, great to have some data though, particularly the information on the treatment options.

Nice Scoping meeting

Well, the Nice scoping meeting is behind us.

The main discussion points were:
- what treatment can Xiapex realistically be compared with? We decided only fascietomy ( surgery) as that is the only treatment routinely offered in England
- Which people can get Dupuytren's and is there a group in those patients that should be treated different? We decided anyone can get it though some groups are more likely to than others ( eg northern European, Serb and Croats, people from Haiti - I did not know that one!) but every case should be judged on it's own accord by patient and doctor, you can't say this group needs surgery more often and that group is better with injections)

I had the feeling a lot of it was educating the people from Nice, they were baffled by the answers now and then ( And how soon does it recur? Well that varies per patient.  How many operations are needed? Varies per patient. So if it starts young it as always more aggressive? No, just in most patients, there are lucky ones.) And they were shocked when I mentioned that amputation is generally seen as the final option for cases that don't respond to surgery, they had not come across that one in their research). 

Now Nice has to make a summary report, which will go back to the Department of  Health.

One of the BSSH surgeons asked for guidelines as he thought that could really help patients ( when should Xiapex be considered ratherthan only surgery) but Nice said this was just an appraisal meeting, so only to see if theycan decide on funding or not funding, not to form guidelines. Maybe in years to come?

On a more positive note I have heard that radiotherapy is available on the NHS in Exeter, done by a Mr Goodman.

Anna