How accurate are statistics? | Dupuytren |

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How accurate are statistics?
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DebbieGG 

DebbieGG 
How accurate are statistics?

I've been pondering how prevalent DD is and the more I look into it the more I wonder if this disease is wildly under-reported. Since I'm fairly certain I have this I've started asking as many people as I can if they've ever known anyone that had it and if so, what they did about it. What I've learned is that a lot of people have it and don't ever get an official diagnosis or treat it in any way. Especially older people who think it's something else.

For example, I discovered that my sister's ex had it (contracture in one finger) and he never did anything about it. He was a stone mason and he just figured it was from a lifetime of hard work with his hands. One of my co-worker's husbands has it and he ignores it too as does his younger brother. Another person I know has a brother with it and his doctor told him not to worry about it until it gets annoying- that was 20 years ago. And the list goes on.

So this leads me to wonder where do the stats on this come from? Are they just people with an "official diagnosis"? How many people have it and either don't notice it or never treat it? I also wonder how many people get a nodule and it simply goes away. How would you be able to ascertain that? The articles I read all say that a decent percentage of people that get a nodule go on to have contracture. OK, what if they don't even notice they have a nodule? Or think it's a callous (like my brother in law)?

I'm curious if there have been any extrapolations regarding this as it might affect research money or more treatments.

spanishbuddha 

Administrator


spanishbuddha 

Administrator

Re: How accurate are statistics?

I'm sure you're right that a diagnosis of DD is under-reported, especially in some countries. I did a quick trawl through various publication sites and found many studies based on certain groups or populations looking for a correlation with DD, where the group selection criteria was not based on an existing diagnosis of DD. Examples I found include diabetics, smokers, alcoholics, some specific countries and other cohorts. How or if this is extrapolated to the overall general population I don't know, however I also found some recognition of under-reporting, and a wide range of apparent prevalence even in similar groups.

wach 

Administrator


wach 

Administrator

Re: How accurate are statistics?

Hi Debbie,

in most countries Dupuytren's disease is not a reportable disease and and statiustics are often questionable. A few studies pursued a more systematic approach: the first one I recall is Ilse Degreef, who investigated the pervalence of Dupuytren's disease in Flanders, Belgium: Ilse Degreef and Luc de Smet "A high prevalence of Dupuytren’s disease in Flanders" Acta Orthop. Belg., 2010, 76, 316-320. In each of the 5 Flemish provinces of Belgium, a market place/shopping mall was visited to examine the hands of randomly chosen individuals visiting the mall. The only criterion was that these individuals looked Caucasian and older than 50 years, with a parallel male to female ratio. At each market place 100 people were examined and digital photographs of their hands were taken. Of the total of 500 examined individuals 32% showed signs of Dupuytren’s disease in any one of its forms (nodules or finger contractures).

Later, an even more systematic approach was taken in the Netherlands by Rosanne Lanting et al. "Prevalence of Dupuytren Disease in The Netherlands" Plast Reconstr Surg. 2013;132:394-403. The authors drew a random sample of 1360 individuals of the population, stratified by age, from the northern part of The Netherlands. Of this sample, 763 individuals aged 50 to 89 years participated in this cross-sectional study. The authors examined both hands for signs of DD. The prevalence of DD was 22.1%. Just nodules and cords were seen in 17.9%, and flexion contractures were present in 4.2% of the study population.

Later reviews are e.g. Lanting and Broekstra et al. "A Systematic Review and Meta-Analysis on the Prevalence of Dupuytren Disease in the General Population of Western Countries" Plast.Reconstr. Surg. 133: 593, 2014. Mean prevalence is estimated as 12, 21, and 29 percent at ages 55, 65, and 75 years, respectively, based on the relation between age and prevalence determined from 10 studies.

Salari et al. attempted a world-wide review "The worldwide prevalence of the Dupuytren disease: a comprehensive systematic review and meta-analysis" Journal of Orthopaedic Surgery and Research (2020) 15:495. They estimate the prevalence of Dupuytren disease in the world as 8.2%. Note that this is 8 % of the total population, not just of an age group as Degreef or Lanting are reporting.

Wolfgang

Edited 05/24/22 12:04

DebbieGG 

DebbieGG 
Re: How accurate are statistics?

That's some very interesting data and it occurs to me that the more detailed studies were performed in countries with a fairly homogenous and predominantly Caucasian population. If you're only looking at a certain group that's where you're going to find it and explains why the idea that this is a disease that tends to affect white northern Europeans is so often quoted.

I also looked at the studies regarding a supposed link between diabetes, smoking and DD. Perhaps there seems to be a link because people with other disorders/diseases are more likely to be at a doctor's office and are incidentally diagnosed. We actually have no idea if alcohol abusers have a greater incidence of this because no one has really tried to find out. Again, if no one is screening for this until it's at a point where it can't be ignored, we actually have no idea how prevalent it is, what the actual course of the disease is, or how it could or should be treated at early stages.

I'm a pretty informed person and have several doctors in my family but I never heard of it before I found those itchy lumps on my palm. it is shocking to me that so little is known about this and even more surprising that treatments are still so primitive. If my palm hadn't itched I probably wouldn't have noticed the lump or would have attributed it to something else until (if or when) it reached a more advanced stage.

Do you know if anyone is doing any studies in the US on prevalence? The US would be a great place to look because we have people from all over the world with all kinds of ethnicities all mixed together. I really don't understand why it seems to be an "orphan" disease with so little attention paid to it. I understand it's not fatal but the degradation in quality of life for so many people should at least warrant the same attention that other health problems get. Toe nail fungus and hair loss get more attention!

I think part of the issue is the name- no one can spell or pronounce it Maybe it needs a catchy new name. COPD used to be emphysema/chronic bronchitis, bi-polar used to be manic-depressive, and ED used to be erectile disfunction. Once the names changed people started to take notice and/or be comfortable talking about it. It's stupid but true.

Anyway, I really hope someone can call more attention to this situation and hopefully get some traction for research and maybe some more treatments.

wach 

Administrator


wach 

Administrator

Re: How accurate are statistics?

Hi Debbie,

with regard to Dupuytren's and alcohol you might check https://dupuytrens.org/alcohol-and-dupuytrens/ . With regard to smoking and Dupuytren's, our patient survey in 2015 showed that, on an average, smokers develop Dupuytren's 7 years earlier than non-smokers https://musculoskeletalkey.com/internati...uytren-disease/ .

The prevalence of DD in the USA was analyzed e.g. by DiBenedetti et al. https://www.ncbi.nlm.nih.gov/pmc/article...rticle_9306.pdf . A very good analysis is on https://dupuytrens.org/common-dupuytren-disease/ .

You may be right about the naming issue. I hope DD helps!

Wolfgang

DebbieGG 

DebbieGG 
Re: How accurate are statistics?

Thanks for the info. I appreciate it!

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cross-sectional   disease   under-reporting   Dupuytren   Dupuytren’s   uytren-disease   individuals   musculoskeletalkey   manic-depressive   statistics   contractures   extrapolations   population   systematic   accurate   under-reported   prevalence   alcohol-and-dupuytrens   Meta-Analysis   common-dupuytren-disease