ATTENTION!!! "New Life Survey" is ready and access

[Jumpy Owl]

The new questionnaire is entitled:

LIFE WITH RLS

is now ready! Please visit:

http://www.thomasholly.net/survey/rlssurvey.aspx

CAVEAT! There are various safe guards built into the web page to prevent abuse and make the data safer and more reliable.

At the start you will have several chances to read the long introduction/background on the survey or go directly to the survey.

Once you start the survey, you will not be able to proceed to the next page unless you answer all the questions required. If you are unable to proceed scroll through the section again and see whether there is a red lettered warning reminding you to answered the omitted queries. You can always go back and check or correct you answers.

However, once you press the submit button, the survey disappears and you will not be able to complete another one and submit it.

In the following post I will quote from the introduction and background of the survey web site.

I hope we will receive lots of submission. herewith I gratefully thank Nadia, my son Tom, and my daughter Gloria to have made this questionnaire a reality [/url]

[Jumpy 0wl]

Here is a quote from the web site of the new questionnaire:

[color=brown]RESTLESS LEGS SYNDROME BACKGROUND

Skip to Questionnaire

This is a brief insight into the vast and often frustrating world of Restless Legs Syndrome. The aim is to provide useful information about what is still a very much unknown and misunderstood disorder. The events leading up to and surrounding the construction of the exhaustive questionnaire and its subsequent publishing on the internet will also be revealed.
Our goal is to have as many fellow RLS sufferers as possible participate by completing and submitting a questionnaire entitled:

“Life With RLS”

Click here then click the "next" button to start the survey

Why Do this Survey?

I would like to elaborate a little more on why I believe this project could make a significant contribution to the medical world. My forte in research has always been that I have the unique ability to identify hidden relationships among seemingly unrelated observations and facts. The others are time and motivation. Although I am retired and also suffering from this affliction, I found that I was able put my skills to good use by analyzing the posts on the Discussion Board, asking pertinent questions, and occasionally offering helpful suggestions.

After being ignored by their health care providers and more often than not, being suspected of ”imagining” their problems these patients truly appreciate someone who is knowledgeable and eager to learn, to listen and most importantly: respond to their problems.

Once all the data from the new survey has been collected and collated, a subsequent evaluating article will offer a truly unique insight into how this strange affliction affects RLS patients on a daily basis. It is also hopeful that this article will shed some light on the mishandling of the proper healthcare management these patients desperately need, yet are not receiving.

Below is a quote from the lecture presently being written which so far, has been based primarily on the data gathered from the original preliminary questionnaire.

Background: The idea and majority of the subsequent communication leading up to the formulation of this questionnaire occurred on the Discussion Board of the Restless Leg Syndrome Foundation. This Discussion Board has been in operation since February, 2004 and even without supervision from the hosting Foundation, the frequent, knowledgeable and compassionate posters spontaneously formed a loose group. At the instigation of one of the first discussion board members, Jumpy Owl, the group started an ORP (Our Research Project) in June which culminated in the construction of a preliminary questionnaire. This questionnaire was publicized on the Discussion Board of the RLS Foundation and also to various RLS support groups throughout the Internet. The questionnaire was then e-mailed to potential participants as and when requested.

In a relatively short amount of time, the number of completed questionnaires passed the one hundred mark, a remarkable feat in itself. The information which was being obtained supplied not only many interesting results, but further insight into the Syndrome itself. It also exposed the weaknesses of the questionnaire format; revealed new avenues of exploration; leading to subsequent topics and questions being added.

This project is led by Jumpy Owl, who is in real life, Dr. Frank J. Holly; a former Professor of Medicine, and the President of the Dry Eye Institute (www.dry-eye-institute.org). Dr Holly is a self-diagnosed sufferer of RLS and has been studying this affliction since he realized his condition is also associated with a severe case of PLMD (Periodic Limb Movement Disorder). The following volunteers have also played a significant role of the creation of “LIFE with RLS”:

• Nadia L. Russell, Financial Accountant and RLS and CFS sufferer - Queensland, Australia;
• Gloria A. Holly - East Texas;
• Thomas F. Holly, B.Sc., M.Sc. - East Texas,
• as well as over one hundred other RLS sufferers who completed the Preliminary Survey as well as making constructive suggestions.

Survey[color=brown]

(Sorry, I could not correct my usual typos in the starting post due to the nature of the "beast.")

[pretzel]

I have been filling out the questionaire and don't know how to answer 2 of the questions. What is a "refractory" condition? Also, What is the difference between "primary" and "secondary"? Any help would be appreciated!

Judy

[Heronak]

Nicely done Jumpy! Just finished it and it was quite thorough. Your efforts are greatly appreciated,

Heron

Pretzel: From the 2004 RLS Medical Bulletin

"It may be either idiopathic (primary RLS, which often has a familial component) or secondary, occurring in conjunction with other medical conditions, particularly iron deficiency anemia, pregnancy, or end-stage renal disease. It has been argued that iron deficiency represents a primary factor in the development of RLS, and this has been supported by CSF and brain imaging studies."

[cornelia]

pretzel, pls read in this "general topics" forum the item: "algoritm for managing rls" and you will find exactly what refractory rls is.
Corrie

[pretzel]

Just got back on here after several days to finish the survey. Thank you Heron and Cornelia.

[jumpyowl]

Very good questions!

And clearly the whole thing is full of loose definitions and question marks as RLS is not well known even by the profession. Or perhaps especially by the profession? Some intelligent, research minded patients could know more.

You already received some sound help. Idiopathic just means that it happened apparently spontaneusly without any reason or cause known (!).

It really does not mean that the affliction has no cause but that we do not know what it is. Iatrogenic is another expession we will soon start to use. This means doctor-, hospital-, or medication-caused.

Primary means to me at present that it has a familial component. And for secondary causes I on my own included change (drastic change) in certain medications.

RLS usually progresses through three stages defined by physcians on the scientific board of the RLS Foundation (Mayo paper). Refractory is a severe example where the drugs do not seem to help any longer. Until that time usually one drug will give sufficient help. Look at the algorithm where they define it well.

I should have included the definitions of the three stages in the survey, sorry.

Thanks for participating. Now it is really up to you! Our team is ready to compile and evaluate the data.

This is just a wild idea but I like it better and better, thre more I think about it. This questionnaire should be an on-going thing. Whe this first reaches a certain level, let us say hundred, the material included in there will contribute to our knowledge but will also bring up new questions. The we will publish a completely new one and only those can get to it, whoever completed the first one. And so on. . .

I think I can recruit a neurologist to this effort. In a way it will be self propagating (a new amendment survey coming out every quarter let us say, asking new questions).

I hope I live that long when our little project contribution (with the efforts of all the other researchers out there ) will crack this complex nut.

All the participants will be notified of any findings that comes out of this effort.

[jumpyowl]

From "Evita" slightly altered:

....and the surveys keep rolling in.....

in reply to the publishing the new questionnaire is entitled:

LIFE WITH RLS

is now ready! Please visit:

www.thomasholly.net/survey/rlssurvey.aspx

Please go on line and try (instructions are in the first post of this thread).

If, in rare cases, you are unable to fill everything required (not everything is required) and cannot proceed, just make up an answer, and at the end of the survey you can explain among the remarks! as Sara wisely did (actually she notified me which is almost as good.)

Let me know if there is any problem but please be specific!

I have finished evaluating the 120 forms (original) at 1 am last night. Now I have to interpret, make new graphs and slides. These results will be presented at the meeting as a preliminary study.

Does anybody come to the meeting in addition to Becat and me? I would love to meet at least some of you!