Adaptation to IBD study - online questionnaire

Hello everyone,

I'm a second year Health Psychology PhD student at the University of Surrey and a fellow IBD'er (Crohn's for 10 years) and I'm about half way through my research into adaptation in patients with IBD. AND I NEED YOUR HELP!

My first study on understanding adaptation has actually been accepted for publication with the Journal of Health Psychology and now I'm working towards developing a questionnaire to measure adaptation and seeing whether this relates to quality of life. I'm collecting data for this study through an online questionnaire that I've made and has been approved by my University's ethics committee.

In order to make this part of my PhD a success and worthy of publishing I need at the very least 200 participants to take part as soon as possible. I would be massively appreciative if you could take the time (15 minutes on average) to complete my study as I'd love to continue to get IBD research out into the mainstream and hopefully make a difference to how IBD is viewed and managed by medical professionals.

If anyone has any questions by all means reply or message me directly. More information is given when you click on the survey link. The only criteria are that you are at least 16 years of age and have had IBD for at least 6 months.

THANK YOU ALL SO MUCH!

https://surreyfahs.eu.qualtrics.com/SE/?SID=SV_6Li2QFyrepQOy8Z

It goes without saying of course that all responses are kept strictly confidential. The number of responses in just over 24 hours has been great (just over 50), but I need a load more of you for the statistical analyses behind the study to work so please do take part.

I think you made need a modification to the survey (based on my understanding of it). As a long term crohn's patient, I deal daily with damage done by crohn's a long time ago such as arthritis, joint pain and a susceptibility to kidney stones (been dealing with that for the last three weeks). While my crohn's is perfectly under control at this time, those other complications don't seem to fit the scope of the survey (maybe that is a future endeavour for you). Many of the answers I provided today would be different if you added the word "complications" to the questions.

In any case, thanks for doing this research. It needs to be done.

I appreciate the feedback shamrock and thank you for taking the time to complete it for me. As you mentioned it's probably something I'll have to include in future work but it's definitely something I can talk about in my eventual write up of the study. In terms of adapting to IBD I completely agree that complications are something that need to be managed and can sometimes, as in your situation, cause more issues than the IBD itself.

I actually did think before I began the study of how to account for issues like depression but I didn't want to exclude anyone with any comorbidities. In the future I'll try and find a way of accounting for these things, but thank you for answering all the questions none the less.

I also had problems with the questions. I have multiple health conditions unrelated to Crohn's. I answered as if I only have Crohn's, because this seemed the only way to provide information about the effects of Crohn's. But it meant that a lot of my answers were actually not true. And it made some questions impossible to know if I was answering accurately, e.g. questions about fatigue - how do I know how much of my fatigue is due to Crohn's and how much to my other health problems?

I found it a bit awkward trying to rate statements like "Surgery will completely turn things around for me" since I've had 4 resections and they haven't turned things around but that's a matter of fact and not perception. Every time I've had surgery I've been very hopeful that they will change things very much for the better so although I chose strongly diagree because it's incredibly unlikely that another surgery will do anything all that beneficial for me, it isn't reflective of the attitude I've taken towards surgery when I've had it and the survey doesn't take into account whether you are speaking from experience or not.

I'd also like to check which kinds of surgeries you are including in your definition of surgery. I'm interested to know if your definition of surgery is narrow (resections and ostomy surgery for example) or a much wider one.

Thank you both for your responses, they've definitely got me thinking. First of all 24601, surgery is being referred to in the wider sense, whatever is appropriate for the participant at the time of answering. However, you make a valid point and this question will need altering in future studies. That particular questionnaire is a pilot so will indeed be refined.

As for the issue of other health issues, UnXmas, this is a very tricky one as I mentioned earlier and something I'll discuss with my supervisor. The problem is that when you include complications of IBD in the question and, as was mentioned by shamrock, your IBD may be fine but arthritis or other health issues are not then you get results where some are answering purely from an IBD perspective while others are talking more from an arthritis perspective, for example, so then we are not getting answers about any one disease. I hope that made sense and you see the difficulty in getting something like this just right. Being a student as well I am unfortunately not afforded the kind of time to pilot my work as professional researchers are so that causes issues from time to time.

Sorry for opening the can of worms! If anything, the survey will certainly highlight the challenges faced by us crohnies. Like all good research, it should point the way towards future study too. There are many really good minds here that I am sure would be willing to help you with any other questions you may have. Good luck with your work!

Happy to help.

Done! Some of the questions were a bit weird for me because I was diagnosed at five, and have no memory of what life before Crohn's was like. Hopefully my responses don't skew your study! ;-)

no problem shamrock, I'm all for constructive criticism. Ultimately what I'm aiming for is something that will prove useful for the IBD community, not to just earn my PhD.

Thank you very much nogutsnoglory and Carrie! That's perfectly fine by the way Carrie, just another thing I can mention in my write up nogutsnoglory, I tried clicking the link in your signature to the IBD genetics study but it doesn't seem to be working, I presume it's expired?

Works for me but here is the direct link https://www.23andme.com/ibd/

Ah ok thanks it's working for me now but I can't take part as I'm not in the US, sorry about that.

Hi Lawrence 89!

I am also a Crohnie planning on pursuing a PhD in Health Psychology! Nice questionnaire.
Good Luck and I hope you have some interesting findings!

Hi there, Sassycat! Thank you very much indeed and yes I'm really excited about what this may eventually lead to! That's very cool to come across a fellow Crohnie who wants to do a PhD in Health Psychology! I wish you all the best and if you do have any questions for me then don't hesitate to private message me and I can certainly do my best in answering them for you.

Having the questions mention "the past 2 weeks" was a bit difficult. I was also diagnosed as a child so while I may have had bleeding, loss of bowel control in the past, it hasn't happened recently but by asking only within the past 2 weeks it almost feels like I'm saying that it never happened and that it doesn't still affect me emotionally to this day, which it does. IBD can go into periods of remission and even symptoms can get better briefly then return (not remission, just an improvement of symptoms) but even the memory of having symptoms in the past can affect your life today (concern about the need for a nearby bathroom just in case, feeling that people don't understand etc). I feel as if some of the questions could say, "have you ever experienced ______" rather than just focusing on the past 2 weeks.

Hope you get enough people to participate. If it's alright with you I can share it on my facebook page as I know other people with IBD who may not be on the forum.

Thanks for the feedback, Jennifer. I definitely understand what you're saying. The issue I have is that in order to assess how my measure of adaptation predicts quality of life it is best to use a validated measure of quality of life (questionnaires that have been refined and tested in a number of ways to show that they accurately measure what they intend to measure). The quality of life measure I used is called the IBDQ and is the most established quality of life measure that is specifically designed for IBD. I agree that "the past 2 weeks" part of the questions is something I'll have to think about when assessing my results, but hopefully you can see now why it's there?

As for putting it on your facebook page that would be amazing! Thank you! I'm currently at almost 120 participants so need at the very least 80 more to reach 200. If I could end up with closer to 300 that really would be ideal as it strengthens the statistical analyses I'll be doing. I appreciate the help

great survey, thank you for your research!

Thank you 4peace, and it's my pleasure, I'm doing my best!

Progress is coming along nicely, I now only 60 more of you to take part in my study before I can start running some analyses and writing up!!

If you can spare 15 minutes of your time to take part using the link in the original post above I would be massively appreciative. Particularly you guys out there as at the moment the numbers are made up of about 80% females.