Survey!

Here you can share your experiences with substances that are ingested, inhaled, or otherwise consumed for the purpose of relieving RLS/WED, other than prescription medications. For example, herbal remedies, nutritional supplements, diet, kratom, and marijuana (for now) should be discussed here. Tell others of successes, failures, side effects, and any known research on these substances. [Posts on these subjects created prior to 2009 are in the Physical Treatments forum.]

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
mh380
Posts: 20
Joined: Sat Aug 22, 2015 5:15 pm

Survey!

Postby mh380 » Wed Jun 01, 2016 7:43 pm

Hi All,

I'm not sure where the right place is to post this, but I put together a pilot survey for us to use to start to get data on whether there are patterns in which treatments work for which people. I'd really appreciate it if some of you would click the link below, make up some fake answers, and take notes on how you think the survey could be improved (or if you even think this is even a worthwhile idea to pursue). One of the parts that I want A LOT of input on is the section towards the end that asks about how you experience your symptoms. I put the common RLS descriptions like creepy-crawly, tingling, and pins-and-needles, but I don’t know of any systematic look at all of the ways RLS can be experienced.

Also, even though there is no reason to answer honestly at this point, because we are just test-driving the survey for now, it is important that you do make some responses, rather than just leaving everything blank. That is because, in order to make the survey less cluttered, some questions tailor themselves to your earlier responses, or only appear if your previous responses indicate that they are relevant. For example, if you don’t indicate that you have taken any specific prescription medication, the survey will skip you past all of the questions about those medications. As another example, you need to say that you have tried IV iron before the survey will ask you if you know what formulation of iron you were given. So please feel free to play around with the survey and go through it as many times as you like.

Here is the link: https://missouri.qualtrics.com/SE/?SID= ... QgboZVs8MB
I look forward to hearing any of your input, either through PM, or on this thread.

Marc

stjohnh
Posts: 317
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: Survey!

Postby stjohnh » Wed Jun 01, 2016 8:42 pm

The question on symptoms that starts "I have no urge to move" should be rewritten, confusing how to answer. I could not finish, survey would not progress past the 80% mark, page where I describle symptoms.
Blessings,
Holland

ViewsAskew
Moderator
Posts: 14797
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Survey!

Postby ViewsAskew » Wed Jun 01, 2016 9:18 pm

Wonderful start! Qualtrics is a great program - you are lucky to have access to it. I think this could be very helpful and am so glad you are following through on this.

I would love to set up a time we could meet in an online meeting and go through it. I started it and noticed things that might help. We can PM about it if you think it would help.
Ann - Take what you need, leave the rest

Managing Your RLS

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.

Rustsmith
Moderator
Posts: 2561
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Survey!

Postby Rustsmith » Thu Jun 02, 2016 1:19 am

I was able to make it all of the way through, but then I am still rather early in the treatment experience so I may not have gone down some of the pathways that Ann and Holland followed. It is obvious that you have put a great deal of thought and research into this. When you get to where you feel it is about ready, you should contact the Foundation. They might want to pass it by their Research and Medical Advisors for their comments, suggestions and use.

As for my feedback, I would suggest adding a Not Applicable or Not Used button for many of the questions dealing with supplements and non-medical approaches. I left Nicotine as a trigger blank only because I have no way of knowing. The questionnaire was happy with that, but it may confuse some people who feel that every line must have a box or button clicked.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Survey!

Postby badnights » Thu Jun 02, 2016 9:11 am

I have oodles of comments but I'm getting tired and I'm less than halfway through. Shall I pm what I have or wait til I finish which might be days from now?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

mh380
Posts: 20
Joined: Sat Aug 22, 2015 5:15 pm

Re: Survey!

Postby mh380 » Thu Jun 02, 2016 4:15 pm

Hi All, thanks for responding so quickly and thoughtfully!

Holland: now that I look at it, you are right that the question doesn't make a lot of sense. Perhaps the item: "I experience no urge to move my legs", should instead have the response options: "true" and "false". Does that sound good to you, or do you have other suggestions?

Ann: thanks for the encouragement! I think an online meeting would be a great idea. We can work out the details of such a meeting over PM. Afterwards, we could perhaps have a group PM thread with others, like Beth, who have more to add. Anybody else who wants to be involved in that group PM, just let me know. Re: Qualtrics, yes, it's a great program, but I won't have direct access to it for much longer. As a result, a very trustworthy friend of mine with permanent access is hosting the survey.

Steve: Thanks! I definitely like the idea of involving the foundation in any way that they would like, once we make the survey as good as we can. For the "not applicable" idea, do you mean, for example, with the question: "Which of the following devices or garments have you used to treat your RLS?" that lists things like Relaxis and ace bandages, that I should put in a "none of the above" option? Or at least include in the instructions that it is okay not to click any? For the part on triggers such as nicotine, it does say in the instructions to leave responses blank if you haven't come into contact with the potential trigger. Perhaps I should make it clearer, and include that you should also skip the potential trigger if you have come into contact with it, but you don't know whether it affects your RLS? Or maybe it is useful information that a person has come into contact with the it, but isn't sure how it affects RLS; in which case we could include something like "unsure" as a response option. For example, I drink caffeine every morning, so I can't say whether my symptoms are better when I stop, because I haven't stopped long enough to know. Would any of that address your concern, or did I miss the point?

Beth: I look forward to hearing your comments. Feel free to PM me with them in any order you like. I assume Ann would want to be included too.

Thanks again!

Marc

ViewsAskew
Moderator
Posts: 14797
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Survey!

Postby ViewsAskew » Thu Jun 02, 2016 7:24 pm

I have access to pretty good online meeting software - we can see the same thing online, call in either online or through the phone, take notes in real time, pass the presenter role, etc.
Ann - Take what you need, leave the rest



Managing Your RLS



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.

mh380
Posts: 20
Joined: Sat Aug 22, 2015 5:15 pm

Re: Survey!

Postby mh380 » Thu Jun 02, 2016 9:47 pm

ViewsAskew wrote:I have access to pretty good online meeting software - we can see the same thing online, call in either online or through the phone, take notes in real time, pass the presenter role, etc.

That sounds fantastic. PM me the details of how I can set up that software, and we can set up a time to go through the survey together.

ViewsAskew
Moderator
Posts: 14797
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Survey!

Postby ViewsAskew » Thu Jun 02, 2016 11:27 pm

I have to set it up; it's a paid version that I use as part of a non-profit board I sit on. We can set the time and I'll send you an invite and link. What's your schedule like on most days?
Ann - Take what you need, leave the rest



Managing Your RLS



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.

mh380
Posts: 20
Joined: Sat Aug 22, 2015 5:15 pm

Re: Survey!

Postby mh380 » Thu Jun 16, 2016 3:29 pm

Hi Again,
Ann and I have been making progress on the survey, but there is one bit of input that I would particularly appreciate right now. We have a section that asks about how your symptoms feel. The descriptors that I have so far are: “creepy-crawly”, electrical, tingling, itching, pins and needles, burning, pulling, muscle tension , aching, and pain. If you know of other ways people describe their RLS/WED symptoms, it would be really helpful if you could let me know, either in this thread or over PM.

Marc

Polar Bear
Moderator
Posts: 6814
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Survey!

Postby Polar Bear » Thu Jun 16, 2016 5:20 pm

Hi Marc, I have nothing new to add, mine would be muscle tension/creepy crawly.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Survey!

Postby badnights » Sun Jun 19, 2016 8:30 am

impending explosion
impending implosion
building-building-building up to an imminent explosion
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

badnights
Moderator
Posts: 4492
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Survey!

Postby badnights » Sun Jun 19, 2016 8:31 am

like my legs and arms don't have boundaries - like I'm diffusing out into the region a couple of inches from my skin - like I have sensations outside my actual body
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice


Return to “Non-prescription Medicines, Supplements, Diet”

Who is online

Users browsing this forum: No registered users and 1 guest