Dear all,
I am a hand surgeon at the Pulvertaft Hand Centre in Derby. As part of our ongoing work with Dupuytrens we are looking at what problems patients have as a result of their Dupuytrens.

We have put together a small survey https://www.surveymonkey.com/s/Dupuytrens_disability_survey and would be grateful for as many replies as possible. We hope that the results will be published. Hopefully we will have more information to push for better care for Dupuytrens.

Chris Bainbridge

The survey crashed right and the end, and I'll re-do it because I want to participate. However, maybe you could clarify something. I've recently had a very successful NA. How I answer the questions about the effect of DC on my life depends on whether I base it on pre-treatment or post-treatment. I assume you are interested pre-treatment, when the effect was at its greatest.

Thanks,
Tom

Hi Chris,
I must agree with the earlier comments that the questionnaire could have been more insightful and less open to mis-interpretation. Having said that, brilliant that you are reaching out and collating data. Please don't hesitate to get in touch if I can help in any way. Left my email address on the survey.
Regards,
Phil Waite

Thank you all very much for responding. It was interesting to see how much passion this stirred up. I am sure the surgery is not perfect but few things are.

Maddie, you list problems which could have been captured at the end of the survey and your concerns are just as important as the more common physical ones. Many patients with Dupuytrens worry about. How their hands will be in the future.

The survey is purposefully vague about where in the treatment cycle each respondent is. I was simply trying to get a handle on the URAM scale which I have doubts about and interestingly so far about 50% of people find at least some of the questions irrelevant. The second aim was to gather from as many people as possible their unedited thoughts. Then we can set out to design a real questionnaire which will be robust and responsive to patients needs or show that patients are so variable affected by dupuytrens that there is no simple questionnaire possible.

Thank you all for responding and I hope that you fill in the survey as you think best. If you leave your email address then we can hopefully come back to you with our next more targeted survey and get better results.

Chris Bainbridge

I was diagnosed with Dupuytren's in 1994 and followed the best advice at the time. Delay surgery. Fast forward to today. I have had a failed palmar fasciectomy in the left hand in 2005 followed by an amputation of the little finger and part of the palm. In 2011 I had another palmar fasciectomy in the right hand, also a failure. I now suffer from severe contractions of the ring fingers of both hands and the little finger of the right hand (the only one left).

Seeking alternatives to being further carved up by supposedly well meaning surgeons, I discovered the option of Xiaflex. Being crippled by what I call "Polio of the hands" my ability to maintain medical insurance, work or gain employment has been nil. I am very successful at phone interviews but when the next step of an in person interview happens my inability to shake hands ends the chance for employment even though my mind (hopefully) works and my qualifications and experience are attractive.

I obtained Medicaid after a year of appeals, found a qualified physician to administer Xiaflex who also accepts Medicaid and was quite hopeful to get it done. Now the state of Washington, effective November 1, 2012, basically privatized Medicaid. The insurer I now have, Molina Healthcare, told me they would cover the procedure even prior to my being covered by them. Now their medical director has informed me Xiaflex is "unproven" and "not medically necessary" even though amputation of almost half my fingers and hands is the only alternative. I am appealing of course.

Perhaps someone here can give me some guidance, advice and hope. Thank you.