POISCENTER

General Category => POIS Research => Topic started by: UCSurgeryTrials on September 27, 2024, 02:09:40 PM

Title: New POIS Survey from University of Chicago - Please fill it out!
Post by: UCSurgeryTrials on September 27, 2024, 02:09:40 PM
Diagnosed with POIS? Your experience matters.

The University of Chicago is conducting a study on POIS with the goal of creating a registry of survey responses from patients like you to help providers better understand and treat the disease.

Pl: Mahmoud Khalil, M.D.

Location: Virtual/On line

Estimated Time Commitment: 30 minutes

For questions, please reach out to: surgerytrials@bsd.uchicago.edu

If you are interested in participating in our POIS research, please visit this website:

https://redcap.uchicago.edu/surveys/?s=FMLHLDD43PNPR93A
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: Aladin on September 30, 2024, 01:10:46 PM
Strange.... after one page of questions, i got the message "Unfortunately you are not eligible"....
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: b_jim on October 01, 2024, 01:57:52 AM
"not eligible too".
I think the first question is the problem.
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: UCSurgeryTrials on October 03, 2024, 09:03:40 AM
We've fixed the issue with the screening page on the survey. Sorry for the issue!

If you tried to fill it out previously and got a message that you were ineligible, please take a minute to fill out the survey again.

We really appreciate you taking the time to complete it!
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: UCSurgeryTrials on October 04, 2024, 03:42:37 PM
Thank you to everyone who has taken the time to complete this POIS Survey so far!

I understand that there has been some confusion given that University of Chicago posted a survey to this forum last year as well. If you've taken the time to complete this survey after taking that one last year, I especially want to extend my sincere thanks. The purpose of this patient registry is to raise awareness of POIS and create a database of patient-reported information, including but not limited to symptoms, time to diagnosis, and treatments trialed. This information will help physician scientists better understand the experiences of patients with POIS and identify what facets of the disease are most prevalent. Knowing this information will guide future research on the etiology of POIS and treatment options. Although University of Chicago is a large medical center in a metropolitan city, we still see few patients with POIS in our daily practice and many patients haven't been formally diagnosed yet. Posting our survey on this forum allows us to reach a much wider audience then we would in our clinics alone. Unfortunately, the survey posted last year was done with a medical student from an outside institution listed as the project coordinator. Because of this, and other issues, that survey data collected had to be destroyed. If you have any questions about this survey, please do not hesitate to reach out to me. Thanks again.

Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: carlo_francesco on October 05, 2024, 05:48:31 AM
First off, thank you for your work on creating a POIS patient database, having a symptoms repository will hopefully be the next step for more specific studies. I completed the survey but some questions needs further improvement.
Nearly all points require at least one value in order to make the survey submittable. In my case I had to make up responses for 'Current/previous medical diagnosis outside of POIS' and 'Mental health medications' although this is untrue. Further I did use pain relievers and anti-histamines in the past with little to no success. I confirmed that I tried these kind of medications without any relieve but then the survey required me to chose a duration of symptom improvement caused by these medications. So I had to chose 'hours' for want of a 'no improvement' option.
These kind of questionnaire rigidities introduce bias in your data and should be fixed.
 
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: UCSurgeryTrials on October 07, 2024, 11:52:52 AM
Thanks for taking the time to complete the survey & provide your feedback. We really appreciate your time.
We've removed the requirement to submit an answer to the two questions you pointed out as well as the one between those two: "Do you take any medications on a regular basis?" People should be able to skip those now if they do not apply to them. Thanks again.
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: Quantum on October 08, 2024, 06:50:09 AM
New banner on the forum homepage to help with the survey, put in place this morning :
Please complete the 2024 POIS Survey from U of Chicago !
****   Click here for the link !   **** (https://redcap.uchicago.edu/surveys/?s=FMLHLDD43PNPR93A)
By filling it out, you are helping POIS research,
so you are helping yourself !
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: UCSurgeryTrials on November 01, 2024, 09:09:00 AM
We just wanted to say a big thank you to everyone who has taken the time to fill out our survey and share your experiences!

We've been really pleased with the number of responses so far!
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: demografx on November 01, 2024, 10:20:58 AM
Quote from: UCSurgeryTrials on November 01, 2024, 09:09:00 AM

We just wanted to say a big thank you to everyone who has taken the time to fill out our survey and share your experiences!

We've been really pleased with the number of responses so far!

[Above emphasis mine - Demo]


Thank you, University of Chicago!!

We’ve all been waiting here - - with numerous
attempts - - since 2007 - - for outside professional research help in understanding our agonizing & mysterious disorder, POIS, so once again, many thanks, it’s been a pleasure working with you!

We look forward to some meaningful results.

Demo
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: Sisyphus on November 21, 2024, 06:49:34 AM
It's good that that University of Chicago are doing a survey. When it's been completed, will we get access to the results?
I think the more research the better but having said that....
I just don't think this is a very good survey. It's not well layed out, some of the questions are poorly expressed and it's not comprehensive enough.

imo If a few people on this forum were to put their heads together they'd come up with something much better than this university's survey.

Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: Sisyphus on November 22, 2024, 12:34:33 PM
Thanks Demo and The University of Chicago
Yes thanks, I made use of the additional info field at the end.
Some of my thoughts about the survey were along the lines of carlo_francesco's comments (see above).
I appreciate it's difficult to get these things right to please everyone.
Yes, I think the survey could have been better but overall, I think it's brilliant that The University of Chicago are doing this and will look forward to reading the results.
I'm positive about any pois research at all and maybe it will lead to a 2nd survey one day.
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: demografx on November 22, 2024, 08:17:06 PM
Quote from: Sisyphus on November 22, 2024, 12:34:33 PM

I'm positive about any POIS research at all and maybe it will lead to a 2nd survey one day.


UMass (Univ. of Massachusetts) Medical School conducted a successful 2024 survey here, “The Psychosocial Aspects of POIS”.

You can search it here at the forum, or contact the PI (Principal Investigator),
Isaac Bronson <Isaac.Bronson@umassmed.edu>
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: demografx on November 24, 2024, 02:53:08 PM
Quote from: Sisyphus on November 21, 2024, 06:49:34 AM

It's good that that University of Chicago are doing a survey. When it's been completed, will we get access to the results?
I think the more research the better but having said that....
I just don't think this is a very good survey. It's not well layed out, some of the questions are poorly expressed and it's not comprehensive enough.

imo If a few people on this forum were to put their heads together they'd come up with something much better than this university's survey.



When the survey is completed, the plan is that the data will be compiled and used in medical publications. When this happens, we will definitely share those publications with the group.

The survey contains 80 questions. We understand that there may be additional information beyond what is asked in those questions that is important to your POIS experience. There is a free response question at the end of the survey. If there is something additional you would like to share with us, I hope you'll use that section to do so.

Thanks for taking the time to participate in our survey!


POIS Research Team
University of Chicago
School of Medicine

(UCSurgeryTrials @ POISCenter)
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: demografx on November 24, 2024, 05:46:11 PM
Quote from: Muon on November 24, 2024, 03:51:36 PM

Very limited [UChicago] survey…


If you can do better, please do so
Title: Re: New POIS Survey from University of Chicago - Please fill it out!
Post by: demografx on November 26, 2024, 01:44:21 PM
Quote from: Muon on November 24, 2024, 06:37:36 PM

…This [The University of Chicago] survey does not add anything to literature. I do not see the point of this one…


I couldn’t disagree more.

I am very happy to get the desperately-needed attention for POIS from 2 major universities recently:

• The University of Chicago The University of Chicago is consistently ranked highly by various organizations, including:
US News Best Colleges: Ranked #11 out of 436 National Universities for 2025

and

• UMass (University of Massachusetts).

This major-league publicity can only further our cause for the good.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

In addition, we’re now embarking on our first major in-depth medical study of POIS sufferers - -  “in the laboratory” - - conducted by seasoned sexual-science researchers at:

• University of Nebraska - Lincoln

• University of California Los Angeles

Since my being here from the 2007 beginnings of this forum - - and as a lifetime (now a senior-citizen) sufferer of POIS - - this is an exhilarating time!

Best to all,
Demo

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Quote from: Sisyphus on November 21, 2024, 06:49:34 AM

I think it's brilliant that The University of Chicago are doing this and will look forward to reading the results…


Thank you, Sisyphus!