Thirteen years ago, a doctor had bad Dupuytren contractures.
He had been told that he needed surgery if he wanted to straighten his fingers. He didn’t want to take time off his practice for what might be a lengthy recovery after traditional surgery. He found a hand surgeon who was doing needle aponeurotomy – which had a shorter average recovery. He traveled cross-country to see him.
I was the surgeon he saw. His contractures were so severe that I was pessimistic that the procedure I was doing would work, and even more pessimistic that it would last very long. Severe contractures may mean severe disease biology. Severe biology means that procedures don’t last long before recontracture. His left hand was so bad that I thought it would do best with a big operation and a skin graft. I explained that he was very possibly wasting his time with a minimally invasive procedure. He still wanted to give it a try. His right hand did well. These are before and immediately after treatment:
His left hand was not as successful. These are before and immediately after treatment. I’m trying to straighten his fingers, pulling so hard my fingertips are white:
He went back home and was lost to follow-up.
Earlier this year, a friend asked me over for dinner, saying “My cousin is visiting from out of state. You treated his hands years ago and he wants to see you!”. I thought “Great!”. I got his name. I looked up his old pictures – and it is this guy. I thought “Oh, no! He’s probably had a couple of operations on each hand since I saw him. He probably wants to show me how terrible he is now.” I thought of the old surgical saying: Nothing ruins a good result like a long-term follow-up.
I met my friend and her cousin for dinner at her apartment. My first thought was “I must have mixed things up. It’s not the same guy. His hands look too good.”
But it was the same guy. He didn’t have any scars on his hands, and so I asked if he had been treated with Xiaflex. No, he said. He wore splints for a while but had no other procedures. None. One minimally invasive treatment on each hand thirteen years ago.
What’s the moral of this story? Does this prove that minimally invasive procedures are the best treatment for Dupuytren contracture? Absolutely not. Does this mean that I am an exceptional surgeon? Again, no, but it does show two things very clearly.
- Contracture severity is not the same as biologic severity. Even though his fingers were very bent, he has mild biology. His fingers kept stretching out after his procedure and he did not have a recurrence within the first few years after treatment clearly. He beat the odds because he has mild biology – something apparent only in retrospect. He was lucky.
- We need a test of biologic severity to choose the best treatment for each person. Right now, doctors decide on treatment based on the person’s story and the surgeon’s personal experience. What we have is treatment based on gut feeling. What we need instead is individualized treatment based on real data. We need to fit the treatment to the disease for each person.
If doctors overestimate and recommend an aggressive operation for someone with mild biology, that person is overtreated. They have all the extra risk of big surgery with none of the benefits because they didn’t need big surgery in the first place.
If doctors underestimate and recommend a minimal procedure for someone with an aggressive biology, that person is undertreated. They are being given false hope and ineffective treatment. They may put off appropriate treatment so long that they miss the window of opportunity to have a great result.
These scenarios play out every day because we lack a test of Dupuytren biology. That’s why the goal of the Dupuytren Research Group International Dupuytren Data Bank http://DupStudy.com is to develop a Dupuytren test: a Dupuytren biomarker. Until a biomarker exists, treatment outcomes will continue to depend more on luck than smarts.