Dupuytren Facts and Figures | Dupuytren Research Group

Dupuytren Facts and Figures

Facts and figures about Dupuytren disease can be hard to find and can be confusing. There are published studies, summaries of studies, and reviews of summaries. Publications include both rock-solid and sloppy research designs. Many articles are steeped in jargon, abbreviations, and words which mean different things in different contexts. Finally, all research is done by humans, which means that there is always some bias, from innocent incorrect assumptions to deliberate marketing spin.

This is a reference for understanding the challenge of Dupuytren disease.

If you haven’t signed up for the Dupuytren Group Newsletter, do it now: Dupuytren News

What is Dupuytren disease?
It’s a medical condition which can make the fingers permanently bent. It’s known for its effect on the palms of the hands but can also affect other areas of the body.

What does Dupuytren look like?
There are several changes which can develop in the hand. Nodules, cords, and contractures may develop in the palm of the hand or the palm side of the fingers. Knuckle pads may appear on the back side of the finger joints.

Dupuytren palm nodule

Dupuytren palm nodule

Dupuytren cords

Dupuytren cords

Dupuytren contracture

Dupuytren contracture

Dupuytren knuckle pads

Dupuytren knuckle pads

Why do people get Dupuytren?
It’s a combination of a genetic risk and a trigger, such as stress and strain on the hands. That’s not the whole picture because some people develop Dupuytren who don’t do heavy work with their hands.

Does everyone with the family gene get it?
No. People can be carriers of the genetic risk but never develop signs of Dupuytren. It runs in families but can skip many generations. Almost half of people with Dupuytren don’t know of a close relative of theirs with it.

Who has Dupuytren?
Anyone can develop Dupuytren, but it’s mainly a Caucasian disease. Compared to a Caucasian-American, a Hispanic-American has about 1/3 the risk, an African American about 1/5 the risk, and an Asian-American about 1/10 the risk of developing Dupuytren disease. (Saboeiro 2000)

When do people first develop Dupuytren?
The chance of developing Dupuytren goes up with age. It’s rare in people younger than 40. On average, men develop Dupuytren earlier than women. If the earliest signs of Dupuytren are included, about 1 of 10 Caucasian men in their 50s have Dupuytren. This number rises to 1 of 4 for men in their 70s, and 1 of 10 women in their 70s. (Lanting 2014, US Census Data)How common is Dupuytren?
If the earliest signs of Dupuytren are included, about 15 million Americans age 35 and older have Dupuytren disease. That’s about one in eleven or 9% of this group. This is similar to the number of Americans with diabetes in the same demographic. (Lanting 2014, Us Census Data)

Is it more common in men or women?
It depends on the ages of the men and women in question. A higher percent of men have Dupuytren disease at any age, but because women live longer than men, the number of men to women drops with increasing age. Because of this, the number of men to women with Dupuytren also drops with increasing age. In people younger than 80, Dupuytren is more common in men. After 80, it’s the opposite. (Lanting 2014, US Census Data)

Does everyone with Dupuytren have a bent finger?
No. If the earliest signs of Dupuytren are included, different studies have reported 70% to 90% of people with Dupuytren have mild or early disease – either nodules without contractures or contractures not severe enough to have a corrective procedure (Degreef 2010, Lanting 2013, Diep 2015). Taking 80% as an average, and an average of one of 20 people with severe Dupuytren disease (Hindocha 2006), in the US, there are 12 million with early or mild Dupuytren, 3 million with at least one finger bent enough to have a procedure, and about 3/4 of a million with diathesis: severe, treatment-resistant Dupuytren disease. Will everyone with Dupuytren eventually develop bent fingers?
Probably not. There’s not much information available on the natural history of untreated Dupuytren disease. Not everyone with Dupuytren nodules will progress to the point of needing treatment for bent fingers. The risk of progressing from a new nodule to the need for contracture treatment is estimated to be 20 to 40 percent per decade (Gudmundsson 2001, Reilly 2005, Millesi 2009). Without a Dupuytren disease biomarker, it’s impossible to realistically predict progression or recurrence on an individual basis.

How is Dupuytren diagnosed?
By look and feel. Right now, there’s no definitive test – no blood test, biopsy, MRI, CT scan, or any other test. Even tissue taken during surgery isn’t a definitive test; it’s reported as “consistent with” the diagnosis, but would also be “consistent with” other conditions such as scar tissue after injury.

What kinds of problems does Dupuytren cause?
Because our hands are so important in every part of our day, Dupuytren affects one’s quality of life in many ways. These are some of the problems reported by patients with hands affected by Dupuytren disease:
Carrying shopping bag/briefcase/purse
Writing
Opening a tight or new jar
Washing self: face/body/private parts
Picking up large things
Picking up small things
Finger hooking on things
Putting on gloves
Pain, tenderness
Gripping
Putting hands in pockets
Placing hand flat
Opening bottle tops
Changing an overhead light bulb
Doing heavy household chores
Pushing open a heavy door
Blow drying hair
Making a bed
Fastening a seat belt buckle
Using a knife to cut food
Carrying a heavy object
Gardening
Caressing a loved one
Recreational activities
Preparing a meal
Turning a key
Putting on a pullover sweater
Shaking hands
Fastening a seat belt
Placing an object on a high shelf

These are the kinds of things people refer to when they sum up their problems by saying “It’s disabling”, “It cripples my hands”, “It affects everything I do”, and “I am so self-conscious.”

Is it associated with other problems?
People with Dupuytren involvement severe enough to require a procedure to straighten fingers are also at risk for general health issues. Several studies have reported increased risk of early mortality and increased cancer risk in patients with severe Dupuytren disease. There are a number of possible explanations. There’s not yet enough data to associate specific types of cancer or to explain why this is so.

People with Dupuytren disease are also at greater risk of psoriasis, arteriosclerosis, diabetes, hypothyroidism, depression, and being underweight. The statistics on these are controversial, and the reasons for these associations are unknown.

How can it be prevented or prevented from getting worse?
Right now, there are many options, including cortisone injections, radiotherapy, topical medications, splinting and other treatments. Some of these may help reduce the size or symptoms of nodules but there is not yet is no solid evidence on the long-term success of any of these treatments on progression to contracture or the need for corrective procedures. (Ball 2016)

Why isn’t there a medicine for Dupuytren?
The short answer is that Dupuytren disease needs the right kind of research to develop medicines, and that kind of research hasn’t been done yet. Dupuytren is a chronic progressive medical disease. It often progresses over years or decades. It speeds up slows down, stops and starts again. This makes it very difficult to tell whether any changes in the hand are affected by a medicine or not. This is a common problem for all medical diseases which slowly cause physical changes in the body. The workaround is to use biomarkers as proxies for physical changes in the body. For example, doctors can use cholesterol as a proxy for cardiovascular disease risk. They can test cardiovascular disease medicines by following their effect on cholesterol rather than having to wait to see whether or not the person eventually has a stroke or heart attack. We need a biomarker of Dupuytren disease activity to be able to test Dupuytren medicines quickly rather than have to wait years to see whether or not fingers continue to bend from Dupuytren disease. This is why the main focus of the Dupuytren research group is to find biomarkers of Dupuytren disease.

How is Dupuytren disease treated?
The standard treatment of Dupuytren disease is to wait until there is a bend in one or more finger joints, and then do a procedure to try to straighten the bends. There are two main categories of procedures. The first category is open surgery. Open surgery involves removing some of the tissue in the palm affected by Dupuytren. The most common open procedure is called fasciectomy. Dermofasciectomy also involves removing some of the skin and replacing it with skin grafts. The second category is minimally invasive procedures, which release cords without removing tissue. Minimally invasive treatments include collagenase injection and needle aponeurotomy.

Currently, there are no proven preventative treatments for Dupuytren diseases. Doctors can only treat Dupuytren contracture, the end result of Dupuytren disease.

Doctors can only treat bent fingers (Dupuytren contracture), which are the end result of Dupuytren disease. There is no cure yet. There are available treatments for early Dupuytren disease (cortisone shots, radiotherapy, topical medications), but no clear proof that these prevent contractures in the long run. The goal of the International Dupuytren data Bank research is to develop the tools to be able to test the effectiveness of medical treatments on the long-term outcomes of Dupuytren disease.

What’s the best treatment?
There’s no single best treatment because there’s not one kind of Dupuytren disease. Compared to minimally invasive procedures, open surgery procedures last longer before recurrence but have longer recovery time and a greater chance of serious complications. Choice of treatment is still more art than science and depends on the individual situation and the answers to these questions.

  • How bent are the fingers? Procedures have the best chance of success when joints are bent in the range of 20 to 40 degrees. Less than 20 degrees and the risks don’t justify the benefit. More than 40 degrees and permanent changes may develop in joints and tendons. Overall contractures greater than 60 degrees or those with secondary tendon damage may have better results with open surgery.
  • How severe is the biology? More severe biology means a shorter time on average between having a procedure and needing to have a repeat procedure for return of contracture. Risk factors for severe biology include Dupuytren in the family, diagnosis younger than 50, Ledderhose, and knuckle pads. Open surgery is the recommended for people who are thought to have severe biology. However, without a Dupuytren blood test, judging how severe a person’s disease is an educated guess with a wide margin of error.
  • How comfortable is the patient with risk? People who are not comfortable with the longer recovery time and greater risk of complications tend to choose minimally invasive procedures. People who want to do whatever is needed to have the best chance of long-term control tend to choose open surgery.

 
Learn about Dupuytren Advocacy
References

Ball 2016 Ball C, Verjee LS, Izadi D, Nanchahal J. (2016). “A Systematic Review of Non-Surgical Treatments for Early Dupuytren’s Disease.” Hand Therapy 21 (1). BMC Musculoskeletal Disorders: 39.

CDC 2014 https://www.cdc.gov/nchs/fastats/diabetes.htm

Diep 2015 Diep Gustave K, Agel Julie, Adams Julie E. (2015). “Prevalence of Palmar Fibromatosis with and without Contracture in Asymptomatic Patients.” Journal of Plastic Surgery and Hand Surgery 49 (4): 247–50.

Degreef 2010 Degreef Ilse, De Smet Luc. (2010). “A High Prevalence of Dupuytren’s Disease in Flanders.” Acta Orthopaedica Belgica 76 (3): 316–20.

Dibenedetti 2011 Dibenedetti DB, Nguyen D, Zografos L, Ziemiecki R, Zhou Xi. (2011). “Prevalence, Incidence, and Treatments of Dupuytren’s Disease in the United States: Results from a Population-Based Study.” Hand (New York, N.Y.) 6 (2): 149–58.

Gudmundsson  2001 Gudmundsson KG, Arngrimsson R, Jónsson T. Eighteen years follow-up study of the clinical manifestations and progression of Dupuytren’s disease. Scand J Rheumatol. 2001;30(1):31-4.

Hindocha 2006 Hindocha S, Stanley JK, Watson S, Bayat A. (2006). “Dupuytren’s Diathesis Revisited: Evaluation of Prognostic Indicators for Risk of Disease Recurrence.” Journal of Hand Surgery 31 (10): 1626–34.

Lanting 2013 Lanting Rosanne R, van den Heuvel Edwin R, Westerink Bram B, Werker Paul M, N. (2013). “Prevalence of Dupuytren Disease in The Netherlands.” Plast Reconstr Surg 132 (2): 394–403.

Lanting 2014 Lanting R, Broekstra DC, Werker PMN, van den Heuvel ER (2014). “A Systematic Review and Meta-Analysis on the Prevalence of Dupuytren Disease in the General Population of Western Countries.” Plastic and Reconstructive Surgery 133 (3): 593–603.

Millesi 2009 Millesi H (2009). Dupuytren’s Contracture. In G. Bentley (ed.), European Instructional Lectures. European Instructional Course Lectures 9, 137-152. Berlin, Heidelberg: Springer Berlin Heidelberg, 2009.

Reilly 2005 Reilly RM, Stern PJ, Goldfarb CA. A retrospective review of the management of Dupuytren’s nodules. J Hand Surg Am. 2005 30(5):1014-8.

Saboeiro 2000 Saboeiro AP, Porkorny JJ, Shehadi SI, Virgo KS, Johnson FE. (2000). “Racial Distribution of Dupuytren’s Disease in Department of Veterans Affairs Patients.” Plastic and Reconstructive Surgery 106 (1): 71–75.

US Census Data http://www.census.gov/prod/cen2010/briefs/c2010br-03.pdf

Wade 2016 Wade R, Igali L, Figus A. (2016). “Skin Involvement in Dupuytren’s Disease.” J Hand Surg Eur 2016,41(6):600-8.