Restless Legs Syndrome (RLS) Discussion Board

Hello all,

I'm working on a project that aims to introduce a device-based therapy to relieve RLS/WED symptoms in patients and facilitate sleep. Together with a small research team out of Stanford, we're trying to get a better understanding of a larger patient population's clinical baseline, and also understand what clinical outcomes would be most impactful.

To this end, we've created a short survey (should take no more than 15 mins) and would be very grateful if you could participate. No personal/identifying information is being collected, and the results are purely to inform device design and clinical trial structure. Here is a link to the survey,

https://goo.gl/forms/ApSsKXOoygY4CxPx2

Thank you,
Shri

Hi Shri - as a participant, I had difficulty with some questions. Hope the following is helpful - I wasn't intending to be hypercritical, so please do not take it that way.

1. I had symptoms as a child, so add an entry to this of "before age 18"

2. The question about being an athlete confused me. I live in a city and for years rode my bike many miles each week (no car), I swam at the gym 5 days a week for many years, and have always been very active. But, I wouldn't say I was an athlete. Maybe be more clear and use a different word, depending on why you are asking.

3. Hours of sleep prior to RLS. A couple of things with this. First, it was so long ago for me, I honestly am not sure I remember. More important, we all need differing amount of sleep. My best friend only needs 5 hours and she's fine. Maybe ask if sleep left a person rested most nights, rested some nights, are not rested most nights. The hours aren't as important, I'd guess, as if the sleep was restful.

4. Leg with RLS - I also have it in my arms. Some of us in our torso. Maybe this is a two part question - first, where do you have symptoms (leg, arms, torso, other) and then ask which side.

5. The following answers, I think, need to be reworded to be more inclusive.

Urge to move legs when trying to fall asleep - CHANGE TO, "Urge to move/sensations occurs when trying to fall to sleep"
Happens at night/evenings
Have an urge or tingling all day - CHANGE TO, "Have urge to move/sensations throughout day"
Wake up from sleep because of urge/tingling sensation in the feet - CHANGE TO, "Urge to move/sensations awaken me from sleep"
Find it difficult to travel long distances in a car or airplane without symptoms CHANGE TO, "Urge to move/sensations occur when sitting, such as in a car, airplane or in a theater"

6. When you ask how often they have symptoms, do you care if the symptoms are intrusive or not? For example, before mine was severe, I'd have symptoms every so often, but they didn't really interfere because I could still fall to sleep. Only once in awhile did they keep me up. If you only want how often, leave it. If it's more important to know how often it matters, that should be added.

7. I've been diagnosed with PLMS, not PLMD. I understand that sleep doctors are divided on the "right" name for it. For now, maybe include both terms in case someone only knows one, not the other.

8. Can your symptoms be induced by any action of yours? Riding in a car, airplane etc? I am not sure what you want to know.

9. What about non-prescription treatments? People here take all kinds of things and not all comes from a doctor. But, they are still medicating and trying to resolve it. For example, nonmedical marijuana, kratom, or supplements.

10. You ask if we do or did take medications. The next question asks if we are compliant which only covers present tense. Need to add, "Are you, or were you..." because it could be past tense.

11. "Could you list" ... CHANGE TO, "Please list" or "Would you please list"

12. "They work ok, but I;m bothered by side effects" - in this and others there are typos and missing punctuation.

13. Not sure everyone would understand the term "out of pocket." Maybe ask, "How much do you spend that isn't covered by insurance..." Also, we have people here from several countries and this only covers US dollars. Is that OK or will it affect your data?

14. The question about whether your insurance covers it - mine covers some, but not others. Maybe add another option that indicates this.

Hope this helps you.

Thank you so much for taking the time to provide this feedback, much appreciated!
All your suggestions are very valid, I've now revised the questions and made edits where applicable. Thanks again.

I muddled through the questions but Ann is an expert in statistics so it's great to have her feedback.