A disease by any other name is not the same...

For everything and anything else not covered in the other RLS/WED sections.
badnights
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A disease by any other name is not the same...

Postby badnights » Tue Jul 07, 2015 5:40 am

Highlights

• Restless Legs Syndrome (RLS)/Willis-Ekbom Disease (WED) is not easily diagnosed and is not well recognized by physicians and the general population.

• The diagnosis of RLS/WED can be influenced by the name used to refer to this condition.

• The term RLS is associated with a higher prevalence of RLS/WED compared with the term WED.

• The term RLS may induce misunderstandings about RLS/WED and should be avoided.

Abstract
Background
Restless Legs Syndrome (RLS) or Willis-Ekbom Disease (WED) is highly prevalent, but patients and healthcare providers alike know little about it. Furthermore, controversy persists as to the best way of diagnosing this nosological entity.
Objective

To verify whether the term used to refer to this disease entity (Restless Legs Syndrome or Willis-Ekbom Disease) affects the prevalence of self-diagnosed RLS/WED in a sample of newly graduated physicians.

Methods
Newly graduated physicians were asked to self-evaluate for the presence of RLS/WED. Briefly, participants were allocated randomly across two groups. One was asked to self-assess for RLS, while the other was asked to self-assess for WED. The evaluation form given to one group asked ‘Do you have Restless Legs Syndrome?’ whereas the form given to participants in the other group asked ‘Do you have Willis-Ekbom Disease?’. Both forms also contained the four criteria for diagnosing RLS proposed by the IRLSSG and instructions for self-diagnosis according to these criteria.

Results
The study sample comprised 1413 newly graduated physicians. Of the 708 participants who were given the form that used the term RLS, 87 (12.28%) diagnosed themselves with the condition. Conversely, of 705 physicians given the form with the term WED, 13 (1.84%) diagnosed themselves with the condition (p<0.0001).

Conclusion
A greater proportion of newly graduated physicians diagnosed themselves with RLS/WED when presented with the term Restless Legs Syndrome than when presented with the term Willis-Ekbom Disease. This suggests that the term Restless Legs Syndrome may not be the most appropriate term to denote this nosological entity.
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: A disease by any other name is not the same...

Postby ViewsAskew » Tue Jul 07, 2015 6:34 am

Very interesting. Of course, it's consistent with my beliefs, so I am prone to agree with it and think it's valid and reliable, lol.

But, truly, very interesting that all these people thought they had RLS - jimmy legs, jumpy legs, whatever. It fits with what happens when I use the term. People often tell me, OH - I have that, too! - when I tell them I have RLS. When I say I have WED or a neurological disorder, they rarely do. Occasionally someone will ask if it's related to RLS.

I, personally, am going to continue using WED in my private life.
Ann - Take what you need, leave the rest

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Polar Bear
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Re: A disease by any other name is not the same...

Postby Polar Bear » Tue Jul 07, 2015 12:26 pm

Sounds a bit like, making the symptoms fit the disease ?
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
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jul2873
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Re: A disease by any other name is not the same...

Postby jul2873 » Tue Jul 07, 2015 2:08 pm

But isn't it just as likely that 12.28% of doctors have the mild, intermittent version of RLS? I was in the early stages of this disease for probably thirty or more years. Occasionally my legs would bother me on airplane rides. Very occasionally I would find that at parties I would have to walk around a bit when everyone else was sitting. Sometimes months would go by without any symptoms at all. But, when I was at that stage, if someone mentioned RLS, I would say on yes, I have it too--without any real sense of what a severe case of RLS entailed. Now, unfortunately, I know what a severe case feels like.

So rather than dismissing this 12 percent as not having the disease, I think it's more helpful to use their admission as a starting point. "Imagine if you had those symptoms all day, every day? Or at least all night? It sounds like you have a very mild, early version of it, and hopefully it will never get worse. But mine has gotten much, much worse, and I need help!" Surely the more doctors who have some identification with this disease, the better, as far as getting research and good treatment.

ViewsAskew
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Re: A disease by any other name is not the same...

Postby ViewsAskew » Tue Jul 07, 2015 6:32 pm

That's the problem with this type of study - they didn't take it far enough in my opinion. Next should have been to get research about their thought processes - why did they think they had it? Until we know their motivation and logic, we can't know if they had it or not. We also can't see what would happen if they had a 30 minute educational module to complete after this - would it have changed their mind (on either side)? And a lost opportunity to help them as the starting point jul2873 mentions!

It still exposes that there are definite issues with what we call it and how we educate doctors!
Ann - Take what you need, leave the rest



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badnights
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Re: A disease by any other name is not the same...

Postby badnights » Wed Jul 08, 2015 2:25 am

The fascinating thing is that all the doctors got the exact same questionnaire, the only difference being that in half the disease was called RLS and in the other half WED. If 12% had a mild form, then that would show up equally on the RLS and the WED questionnaires.

This study shows that the name RLS brings something to mind very different from what the name WED brings. It says something fascinating about surveys in general, doesn't it? A basic assumption of prevalence studies is that the name of the disease on the top of the questionnaire will not affect how people answer the questions. This little study proves that assumption is very wrong.

I, too, still use WED in daily life. The name of the disease has not changed, only the name of the Foundation. WED is now a part of the literature.
Beth - Wishing you a restful sleep tonight
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ViewsAskew
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Re: A disease by any other name is not the same...

Postby ViewsAskew » Wed Jul 08, 2015 2:37 am

As a social science person, not a hard science one, I've studied survey structure a LOT! And, when i need to do important surveys for work, I hire a psychometrician with a PhD and LOTS of experience! As you noted, Beth, survey structure is so important. And, if absolutely can affect the outcome.

Great point - the questions were identical. Only the name was different.

IF they ONLY used the criteria to form their answers, the results should be identical, whether they had mild, moderate or severe symptoms. But the name was part of their assumption. They didn't know WED, so they didn't think they could have it - possibly even if they did.

My more fervent wish is to do it again - but this time with a third survey that had NO disease name.
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

badnights
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Re: A disease by any other name is not the same...

Postby badnights » Sun Jul 19, 2015 4:47 am

Gosh yes. That would be enlightening.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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KonaKathie
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Re: A disease by any other name is not the same...

Postby KonaKathie » Sun Sep 06, 2015 9:22 pm

I disagree with the name change, but I'm a layperson. It seems to me we've just gotten recognition for what "restless legs" are. Now they change it to WED, which has no descriptive charactaristics. How many years will it take before anyone knows what "WED" means?

badnights
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Re: A disease by any other name is not the same...

Postby badnights » Mon Sep 07, 2015 4:15 am

The name WED is infiltrating the professional literature already. For something major like that, I would guess it takes about 5 years to be adopted in specialist circles and 10-20 in lay circles, depending on the amount of promotion the new name gets. It has been two years, and one of the biggest sources of promotion was lost when the Foundation changed its name back to RLS Foundation.

To undertake a name change is a thing of great bravery and risk; but well worth it if the name catches on. The reasons to change are still valid and are not going to go away. The condition is not one of restlessness, and it is not a state of mind. Restless just doesn't begin to describe the torture. The condition is not confined to the legs (god don't I know). The idea behind the change is that if the name can't be properly descriptive, it should not attempt any sort of descripton, so that no mis-descriptions creep in.

To change the name or not is a question of balancing the value of long-term and short-term gain. It's a hard one to answer - we can't see the future. But I personally hate the name restless legs syndrome. It makes people laugh, as if what has destroyed my life is trivial.
Beth - Wishing you a restful sleep tonight
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badnights
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WED name is not misleading, RLS name is

Postby badnights » Sat Feb 16, 2019 11:24 pm

We have another indication that the name Willis-Ekbom disease is superior to the name RLS for patients with this disease. A previous study showed that the name restless legs syndrome actually affects diagnosis by creating false positives. This study suggests that the fifth criterion for diagnosis, added in 2014, is not necessary when the name WED is used. The fifth criterion for diagnosing WED/RLS specifies that the symptoms are not caused by another condition. The first four criteria actually describe the disease (urge to move, etc.). The entire paper is available at http://www.scielo.br/scielo.php?pid=S00 ... ci_arttext. Selected quotes:

"In a previous study, we found that replacing the name “restless legs syndrome” with “Willis-Ekbom disease” greatly altered the prevalence of self-diagnosis. This indicates that the name RLS tends to be misinterpreted, particularly because the term “restless” is suggestive of physical and psychological conditions unrelated to the disease, such as the habit of fidgeting or otherwise moving one's legs in different situations of daily life. Our hypothesis is that the use of the name WED is enough to improve diagnostic accuracy, reducing or abolishing the need for the fifth criterion altogether and, consequently, facilitating proper diagnosis."

(I've listed the 5 criteria below fyi)

I think the previous study they refer to is the one discussed in the beginning of this thread.

"We studied the impact of the fifth IRLSSG diagnostic criterion on the prevalence of self-diagnosed Willis-Ekbom disease among recent medical graduates applying for residency at a highly-competitive Brazilian university. The respondents were divided into two groups and analyzed their own clinical condition with respect to the diagnosis of WED. One group completed a self-assessment questionnaire that included all five IRLSSG criteria, while the other completed a questionnaire with no fifth criterion."

"Diagnosis of RLS is based on the patient's report. However, symptoms that mimic the disease may be present, including cramping, positional discomfort, pain, and local leg pathology, as these may satisfy all four criteria for diagnosis of RLS. To improve diagnostic specificity, these clinical conditions must be ruled out. Hence, the addition of the fifth diagnostic criterion in 2014. In other words, the fifth criterion aims to facilitate recognition of the disease by characterizing what it is not, to define it in its full clinical and technical sense."

" there is still much ignorance about this condition among physicians and the general population. When healthcare providers are faced with the expression “restless legs syndrome”, the term “restless” calls to mind meanings that do not represent WED accurately. This prevents clinicians from seeking more information about the disease and asking patients for a detailed description of their symptoms, as the clinicians' own experiences with the term “restless” lead them to assume they are knowledgeable about the condition and thus neglect its true technical definition; the term “Willis-Ekbom disease” is not associated with such preconceived notions."

"Our study has some strength since we randomly distributed the forms, the population is highly educated making it easier to understand our purpose, we have a large number of participants and, most important, they were physicians (recently graduated) and the main reason and to whom these criteria are finally destined."

"In summary, our study suggests that the fifth IRLSSG criterion is unnecessary when using the expression WED in a population of recently graduated physicians, reinforcing the need for and importance of introducing it into daily clinical practice. In addition to giving this highly impactful condition the seriousness it deserves, this shift would motivate clinicians to understand its true symptoms, facilitate and streamline diagnosis, and prevent derogatory and degrading remarks related to the expression “restless legs”."

If you want to read the abstract, which is their summary of the study, here it is:

ABSTRACT

In view of the diagnostic challenge posed by restless legs syndrome/Willis-Ekbom disease (RLS/WED) to health professionals and the challenge of its recognition by patients, the diagnostic criteria have been revised and updated to facilitate identification of this disease. However, in a previous study, we found that self-diagnosis of RLS/WED depends on the very name used to describe the condition.

Objective:

To ascertain whether the presence of the fifth diagnostic criterion of the International Restless Legs Syndrome Study Group (IRLSSG), is necessary for RLS/WED diagnosis when the term “Willis-Ekbom disease” is used.

Methods:

We randomly distributed 705 forms to recent medical graduates, asking them to self-assess whether they had “Willis-Ekbom disease” (WED). In one questionnaire model, we excluded the fifth criterion suggested by the IRLSSG, while in the other, all five criteria were included. No forms contained the term RLS; only WED was used throughout.

Results:

Seven hundred and five recent medical graduates participated in the study. Among the 332 who received the form without the fifth criterion, 8 (2.41%) self-diagnosed as having WED (95%CI: 0.8%-4.1%). Of the 373 who received the form with all five of the 2014 IRLSSG criteria, 9 (2.41%) self-diagnosed as having WED (95%CI: 0.8%-4.0%) (p > 0.05).

Conclusion:

Our data show that presence of the fifth IRLSSG criterion did not influence self-diagnosis of WED among recent medical graduates, suggesting that the name WED reduces the odds of mimics (confounding conditions) being misinterpreted as symptoms of this disease. This finding indicates that for the diagnosis of RLS/WED only four criteria and a systematic use of the name WED are necessary.

THE FIVE CRITERIA
that must be met to diagnose WED/RLS:

An urge to move the legs usually, but not always, accompanied by or felt to be caused by uncomfortable and unpleasant sensations in the legs.

The urge to move the legs and any accompanying unpleasant sensations begin or worsen during periods of rest or inactivity such as lying down or sitting.

The urge to move the legs and any accompanying unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity continues.

The urge to move the legs and any accompanying unpleasant sensations during rest or inactivity only occur or are worse in the evening or night than during the day.

The occurrence of the above features is not solely accounted for as symptoms primary to another medical or behavioral condition (e.g. myalgia, venous stasis, leg edema, arthritis, leg cramps, positional discomfort, habitual foot tapping).
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: A disease by any other name is not the same...

Postby ViewsAskew » Tue Feb 19, 2019 7:10 am

Well, you know how I feel...
Ann - Take what you need, leave the rest



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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.


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