Patient-Formulated Lyme Disease Survey Draft

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
phyfe
Posts: 167
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Fri 8 Aug 2014 17:36

duncan wrote:I proposed three distinct but related questions: Intellectual, Concentration, Emotional. Under each of those three questions, running DOWN, wouuld be the respective examples for each question, e.g.Writing, Reading, Studying, Math, etc..

Running ACROSS the page, for two of those questions, Intellectual and Concentration, would be Time Frames. The Time Frames would not need to be addressed for Emotions.

Does that help?

I MISS CLARITY!!! Sometimes I feel like the Scarecrow in the Wizard of Oz. :)
That is perfect! Thanks, Duncan! It's so cool that you understand my rambling. 8-) Does this make me Dorothy? ;) :lol:

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Fri 8 Aug 2014 18:40

Evidently a Dorothy that's inclined to hightail it south to Tijuana with Auntie Em every couple of weeks or so, don a poncho and sombrero and spurs, and toss back tequila while shooting at the boots of gringos. ;)

Formatting this to make it work will require nothing less than sheer wizardry. Accomplish that kind of magic, you are Oz in my book.

Camp Other
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by Camp Other » Fri 8 Aug 2014 19:39

duncan wrote:This is excellent. Meticulous. Seriously good work.
Danke! Thanks :)
duncan wrote: Still, the length of the survey - unless we cut it back significantly - if it stood as is, typically would be problematic. It would scare off too many people.

I don't know, though. Each one of the individuals we would approach should have a vested interest in taking the time, and making the effort. And if they knew it was drafted with the insights and concerns of fellow patients...
There are options, here:

Depending on the individual person, the survey can be given to them in such a way that they can fill it out on their own time and we make sure it includes questions which ask something like, "How often did you have to stop to take a break for how long before continuing to complete this survey?" Either that, or as was suggested here by phyfe, have it be not in paper form but in computer form, and build a timer into each section.

If the timer exists, by the way, I'd want it blinded to the person filling out the survey. This is particularly important in getting a more accurate assessment of time sense distortion and the subjective passing of time. The survey administrator/reviewer should have a record, however, of when certain sections were filled out and how long it took for the person surveyed.

One can also flexibly administer the survey verbally if reading does not work for the person taking the survey. At the same time, some sections of the survey may deliberately be verbally administered only in order to get an accurate report. What I'm doing here, though, does tend to cross over from being merely a survey to having elements of neuropsych testing built into the survey itself, e.g. "Can you remember these 5 words if I ask you them ten minutes later? 20 min? etc."
duncan wrote: Let's see what we end up with, content and format-wise. Certainly we would provide instructions that include recommendations to patients to treat the questionnaire almost as if it were a project, to take one's time, to reach out with questions etc.
Absolutely. I think the process of designing the survey, more questions about how to administer it will come up, and further discussion about it will lead to some reverse engineering. In other words, we'll think up sections, then think of how to administer them, then realize that some of them are conditionally administered or only administered in a certain format/approach once we've completed more sections and see what potential "triggering events" there are which lead to a survey taker needing to take a sub-survey.

I wish we had flowchart software we could access as a group. That might be a good top level way of mapping out what I'm describing here.
duncan wrote: What a treasure trove of data this COULD represent. Here's another thought: Do we ensure anonymity? Obviously within our Forum, but for those outside of our Forum who desire it? We can figure that out.
It could be very useful.

But anonymity brings with it its own issues, which I brought up earlier: How does one confirm that someone has seen a doctor for their diagnosis and that they currently are being treated or have recently been treated by a doctor for Lyme disease?

Remember what I said about news site polls and accuracy of them based on their being anonymous? That someone could randomly skew the data who has never had Lyme disease? It's something to be aware of.

Someone can, of course, have an anonymous profile where the data is blinded - we don't know who it belongs to. But somehow there needs to be a method of verifying that the person taking it has in fact seen a doctor and been diagnosed because that is an important factor in confirming the credibility of the data.

We might want to look at how other medical surveys have been administered and how that worked around privacy laws (internationally and regionally).
duncan wrote: Camp Other, when I threw out the concept of intellectual/emotional/concentration triggers, I did not mean to imply you do all the work. I was just wondering if you would I agree that we should. I will put together some questions as well.
:lol: I have no intention of doing all the work. I just put it out there, though, if I'm on a roll and it comes to me. Which it did. I need a break now, though. Happy to see what other people come up with.
duncan wrote: Need coffee. Better feed my Stupid Big dog before she devours another bear. And shower.

With those three things behind me, who knows, maybe I can turn my mind in on my mind.
I'm having more coffee right now... Did I miss something? Your dog ate... a bear? WTF?

phyfe
Posts: 167
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Fri 8 Aug 2014 20:21

duncan wrote:Evidently a Dorothy that's inclined to hightail it south to Tijuana with Auntie Em every couple of weeks or so, don a poncho and sombrero and spurs, and toss back tequila while shooting at the boots of gringos. ;)

Formatting this to make it work will require nothing less than sheer wizardry. Accomplish that kind of magic, you are Oz in my book.
I'll do my best! Just don't look at the woman behind the curtain! ;)

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Fri 8 Aug 2014 20:28

Camp Other, regarding the bear thing:
Technically? Well, TECHNICALLY, I suppose, no. No. My dog has never eaten a bear.

But she is a dog. She is Stupid. Big, too. And bear use my backyard - Stupid Big dog's domain - as a thoroughfare.

The bear are too large for her, but she is clueless, and I've never had the heart to tell her. Not sure how to word it, you know.

I just make sure the bear are never around when she is out making sure they never come around.

Phyfe - Oh, I see what you did there...
Last edited by duncan on Fri 8 Aug 2014 20:42, edited 1 time in total.

phyfe
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Joined: Sat 15 Sep 2012 19:28

Re: Patient-Formulated Lyme Disease Survey Draft

Post by phyfe » Fri 8 Aug 2014 20:32

duncan wrote:Phyfe - Oh, I see what you did there...
I can't pull anything over on you Duncan. Sharp as a tack! :lol: You always make me laugh!

velvetmagnetta
Posts: 469
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 9 Aug 2014 1:41

Hi CO! Thanks for the invite...

I wrote some of the worst symptoms I have experienced, but they were not in the form of a question. It was just really hard for me to think about them, so I just wrote them down as fast as I could and then submitted them as is. I also procrastinated for several days before writing them down because I just couldn't stand to think about them. The intensity and duration of symptoms I, and others, have experienced can be considered traumatic, and I think this may be one of the effects of that trauma - where your brain just doesn't even want to go there.

I like my brain because of this, though. Oftentimes, after experiencing pain no living being should ever experience, I later cannot recall what it felt like - just that I considered it so.

Perhaps another part of why it has been so difficult to think about these symptoms is that they are all related to the brain and as such have both voluntary and involuntary aspects to them. Like "mind over matter", sometimes even just the thought of certain pains seemed to actually cause them to happen!

Here's a question I have not yet seen asked in quite this way:


Have you ever had a migraine or migraine-like headache that lasted more than:

Duration:

Intensity: 1 = painful, 2 = very painful, 3 = unbearably painful, 4 = excruciating, 5 = unimaginably painful

(You may fill in more than one)

1 hour_____
2 hours_____
5 hrs_____
10 hrs_____
1 day_____
3 days_____
1 week______
2 weeks_____
3 weeks_____
1 month_____
2 months_____
3 months_____
6 months_____
1 year_____
longer than 1 year_____
If longer than 1 year, how long?______ At what intensity?______



Also, I haven't seen a question about the strange phenomenon some of us experience known as 'depersonalization', though I did meet someone else with Lyme who experienced this. Not sure how to phrase that one.

*Edited to add "excruciating" before "unimaginable"

**Edited again to add that multiple answers are allowed...Sorry Phyfe! I think this is the last edit.
Last edited by velvetmagnetta on Sat 9 Aug 2014 4:22, edited 4 times in total.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 9 Aug 2014 1:44

Oh, Duncan, for the math problems questions (I'm not yet finished reading all of those) - maybe we should specify what kind of math. For instance, I can multiply and divide just fine, but I cannot add or subtract to save my life! They are probably done in different parts of the brain.

duncan
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by duncan » Sat 9 Aug 2014 2:09

Velvetmagnetta, specifying types of Math sounds like a good idea. BTW, is that true? About different Math problems may be rooted in different parts of the brain?

It makes me wonder about global damage, as opposed to say, a particular part of the brain like the 7th cranial nerve. Borrelia can attack the brain in different ways, if I understand correctly. I mean, it's not just which region or compartment Lyme may gravitate toward, but if there is such a thing as Lyme vasculitis for instance, the damage could be perfused, at least theoretically. This is another reason image testing for Lyme damage shouldn't be restricted to MRI's, imo. Instead of lesions or multiple foci, this kind of damage could register as cerebral atrophy, and could be visible with the right technology. Actually, even MRI's would demonstrate this, but I was hinting at SPECT scans.

velvetmagnetta
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Re: Patient-Formulated Lyme Disease Survey Draft

Post by velvetmagnetta » Sat 9 Aug 2014 3:27

I have still not read further yet, but I wanted to get this idea in before I forgot:

The intensity of my symptoms ebbs and flows now that I am actually experiencing "flare-ups". For instance, some days I can read several paragraphs, but others, I can't even read at all. Maybe we can ask most of these questions "At your worst" and "At your best" and perhaps even "On average".

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