January 25, 2021 at 11:30 am #10284天爱 陈Participant
Hello, we are students from the University of Cambridge looking into opportunities for a patient-centric app for disease monitoring for gout management.
We would be glad if you can help us post the following link for a quick survey. link:https://www.surveymonkey.com/r/BNCKXVV All participant responses will be kept anonymous. By completing the questionnaire, the respondent agrees that the anonymised data may be used in the publication of the results and shared with other academics and research partners for research purposes only.
Thank you for helping us out.
January 25, 2021 at 12:34 pm #10285Keith TaylorParticipant
Here’s my survey responses [With my additional notes about my choice of options]:
1. How old are you?
2. Which country do you live in?
3. How recently were you diagnosed with Gout?
4. How confident are you about the causes of a gout attack?
Very confident, I know what my cause is.
5. How often do you experience a gout attack which requires medicine treatment?
2 times or less than a year [I never get gout attacks because my uric acid is controlled using daily allopurinol with annual blood test]
6. Do you track your purine intake?
If yes, how do you track your purine intake?
If not, why not?
a) Scientists cannot accurately determine what percentage of different purines in food get converted to uric acid.
b) Uric acid is generated from purines in our own flesh as well as what we eat.
c) Compounds in foods can influence how much uric acid we excrete.
d) Compounds in foods can influence how much uric acid we generate.
All these factors directly influence the level of uric acid in the blood. Other diet related factors might also indirectly affect uric acid level and the symptoms of gout.
7. How much time a day are you willing to spend on tracking your daily purine intake with an app?
I don’t want to track my purine intake.
8. Are you willing to use a smartphone application to help monitor your gout symptoms and treatment?
9. Which of the following features for gout monitoring would you find the most useful in a smartphone application? Please order from most to least useful
[The survey presents a list of 9 features that can be dragged or clicked into different positions.]
1 Reminders for taking medications, scheduling appointments, doing exercises.
2 Personalised joint friendly exercises guide.
3 Symptoms and other data tracking(body weight, purine intake, meals, water consumptions…)
4 Ability to share data with your doctor to influence treatment.
5 A discussion forum to connect with other gout patients and GP.
6 Up to date news related to gout.
7 Personalised low purine dietary recommendations.
8 Purine information food database.
9 Activity tracking by connecting to external sources e.g. apple health, fitbit, strava
10. Are there any other features not listed which you feel useful?
11. How much money are you willing to spend on a gout self-managing app as a one-off payment?
I don’t want to spend any money on it.
12. Are you currently using an app to track your gout condition?
January 25, 2021 at 1:51 pm #10290nobodyParticipant
I also filled in the survey. In my opinion, the only answer worth sharing is why I don’t track purines so here is mine:
“There is no way to set targets, and no point since zero is best in most cases. So while knowing what to eat and not to eat is potentially useful, tracking isn’t. There is also very little useful information (we’d need numbers for hypoxanthine and so forth) about the purine content of various foods so it would be mostly guesswork anyway.”
Your answer to that question sounds like denial, Keith. The climate change denialists who aren’t liars or insane have similar arguments for instance. Things are never going to be known as precisely as we’d like and things are always going to be more complicated. The issue is: is the knowledge we have actionable?
And in this case, yes it is. We do know which purines have a large effect on uric acid, and we have a rough idea about which foods contain significant amounts of such purines. We also know which purines have a smaller effect and, though they are ubiquitous, we have a more precise idea about which foods contain especially large amounts of these.
Purines are as you point out not the only thing that matters about diet and more precise knowledge would be welcome of course, for instance when it comes to species of mushrooms. But we can work with the knowledge we have.
January 25, 2021 at 4:54 pm #10292Keith TaylorParticipant
Great points, nobody.
First, I included all my responses so that people can see what the survey is about before going to complete it. But I agree the purines question is important. Though I also have a strong interest in knowing what features people might like to see in an app.
I can see now that I only gave negatives for the purine responses. I’d love to be able to say that was a deliberate ploy to encourage you to post your views. But I don’t have that much foresight. However, I agree that it is better to work with the knowledge we have. Also, a purine-intake tracking app might encourage the availability of more purine data. As well as insights into better correlations between different types of purine intake and net uric acid levels.
The Japanese gout guidelines include recommendations for purine intake (from memory – I’ll add the references later). In that context, a purine monitoring app to support medical targets would be very useful. But I’ve never heard of American or British doctors setting purine intake targets.
I hope other readers will post their doctor’s remarks and advice on purine consumption. As well as any other comments they have about this survey.
January 25, 2021 at 5:24 pm #10293nobodyParticipant
Japan seems more advanced in the treatment of gout and the best information regarding purines I’ve seen indeed came from Japan so I would be interested in knowing more about the recommendations there. But while targets can be useful when it comes to calories for instance because you could consume too few as well as too much, so far as I know there is no benefit to be gained by increasing one’s consumption of purines.
The information I received from doctors (or dieticians) in a couple of European jurisdictions has been mostly useless, and sometimes simply wrong. They know enough to tell people to moderate their consumption of alcohol but that’s about it. They never dared to provide me information about purine contents of foods in writing (the documents I’ve received about better-understood nutritional topics were inaccurate and/or bizarre enough!).
Since you’re interested, I think reminders would be the most useful feature of an app though things like symptoms and water consumption might also be worth tracking. If I don’t write that down, sometimes I forget the last time I took a pill. Fresh exercise ideas might also be useful for instance but that’s not specific to gout.
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