Research Study on Health Realted Quality of Life in IBD

[amkatz]

Health-Related Quality of Life in Patients with Inflammatory Bowel Disease.
David has approved this posting.

Greetings all,
I am writing to invite you all to participate in a study I am conducting as part of my doctoral dissertation research. If You have some time to spare, I would appreciate you considering participating (should take about half an hour) and/or letting your friends with IBD know about it.

People with a diagnosis of Crohn’s Disease or Ulcerative Colitis and who are 18 years of age or older are invited to participate in a study examining health related quality of life in inflammatory bowel disease. By answering a series of brief questionnaires, you will be contributing to research efforts in understanding how to prevent unnecessary distress and improve subjective quality of life for people living with IBD. In addition to our sincere gratitude, eligible participants will have the option of a $3 Amazon.com credit, or a $3 donation to the CCFA on your behalf.

The present study is being conducted as part of a doctoral dissertation in counseling psychology at the University of Memphis. The person in charge of this study is Aron Katz, under the supervision of Douglas Strohmer, Ph.D., chair of the department of Counseling Education Psychology and Research. The purpose of this study is to expand our understanding of the factors that contribute to health-related quality of life in medically complex illnesses.

Those interested in participating are encouraged to go to: https://sites.google.com/site/ibdresearchstudy/ to take the survey online. Questions about the research project may be directed to [email protected] and will be answered as quickly as possible.

 

[David]

If you take this survey (thanks) feel free to respond to the thread to bump it for others to see. I'd love for Aron to get the responses he needs as it benefits us all.

 

[Josephine]

Done and donate fee.

 

[nogutsnoglory]

I could not proceed past question 14 it said "This question requires an answer"

I answered everything on that page.

 

[crohnscait]

I had the same problem getting past #14. Is it a browser issue?

 

[nogutsnoglory]

I was doing it on my phone maybe it's a mobile issue. Were you on phone?

 

[crohnscait]

No. I was using Chrome.

 

[DustyKat]

I had Matt taking the survey and he could not get past question 13.

 

[alex_chris]

You can get past question 14 by checking all the right boxes on "what symptoms are related to your disease".

Not to be criticizing too much, but although this seems a great idea and aggregating data is important for a scientific study, I have to say the questions are not thought through and for real research concentrating on 15 question answerable in 5 minutes would yield much better results and would focus the research. Specifically, it would increase the number of people who complete the whole questionnaire significantly.

 

[amkatz]

Hi All,
I am the researcher on this project and I appreciate your feedback! I will look into the forced answer issue this morning and get back to you ASAP.

alex_chris, I agree with you that some items seem rather limited. If I were doing qualitative research, these are certainly not the questions I would ask! I used these specific questionnaires because they are the most used and empirically supported in this genre of mind-body illness literature to assess specific constructs in the theory that grounds this study. I don't mean to be vague, but I would hate to influence the way anyone answers the questions.

It would be a HUGE favor to me if anyone who had problems could continue to post, or email me directly at [email protected] . I need to document and fix any problems or the quality and credibility of my study suffers. I will include this in the discussion section of the final paper. If anyone else altered their responses just to get to the next screen, please let me know ASAP! Fortunately, I am still very early in recruitment, and these problems should wash out in the end. Still, I'll check with my chair.

Thanks again!

--Aron

Quick update: I altered questions 13 and 14, and this should have resolved the problem. Thanks for bringing this to my attention!

 

[Samboi]

Your survey does not take account of people with stomas.
I don't have bowel movements as my intestines are disconnected.
My thoughts about surgery revolve around reconnection.

 

[amkatz]

Thanks, Samboi. I hadn't considered that, and it's a great point. I will definitely bring that up as a limitation of the instrument, and in the interpretation.

Once I finish data collection, and have the stats portion done, I would love to get some feedback as I interpret the results. All comments are welcome, by whichever means you'd like. You guys are an enormous help.

 

[sickofcrohns]

Survey problems

Question about question #4, race. I'm Ashkenazi. I'm sure a large % of the other people who answer as "white" will also be Ashkenazi, since Crohn's is particularly prevalent in this ethnic group. Why is this not a specific option?

Also, question #25 -- the choices don't correspond well with the question. In fact, I have no idea how to answer it. (Energy frequency? I have had far less energy than usual -- what is the corresponding answer?)

Questions #31 and #32 are identical. Both also ask about bowel movements, not at all about other IBD-related pain types (arthritis, mouth ulcers, etc.) or fatigue. (For me, fatigue is the biggest factor interfering with a normal life).

#33 and #34 are also identical.

General question: how come answers are always presented in the range from normal to higher than ever? Why is there not an option for less than normal? (If normal is an average, there should be a range presented with both high and low answers possible).

 

[amkatz]

Hi, SickofCrohns,
Thanks for the input! Those are great questions, and I wanted to give you an answer worthy of the questions. I apologize for the length of the response. You can read as much or as little as interests you, but I thought it best to give more information.

#4: Race.
You’re right, that there is a lot of evidence of genetic determinants of diseases including IBD, and if I were studying genetics, gene therapy or medical interventions, this would be very important information. I did not include this as an option because it is not the most relevant factor to my specific research question (which I can’t share here just yet without possibly introducing bias.)

My field is behavioral health, the way that cognitive, emotional and behavioral factors both influence, and are influenced by health state. While there may be a genetic component to this, the relative influence of genes is likely so small, that the cost (introducing an additional potential source of variance) does not outweigh the benefit (marginal increase in explanatory power.) It would still be interesting to know, the percentage of participants of Ashkenazi descent, but there is a tradeoff for each additional predictor variable included in the analysis (It might help to know that I will be using multiple regression in the analysis.) Each time I add an additional predictor variable, the chance of a false positive finding of significance increases, and to combat this, I need to raise the sample size. Without boring you to tears with statistics, my power analysis (the procedure for finding out how big a sample size must be given the number of predictor variables and estimated effect size) indicated a sample size of 154. This is considerably larger than all previously published comparable studies.

Given all that, you may wonder why I’m even asking about race. I didn’t initially. My committee asked me to include it because most studies typically do, and often report basic demographic breakdown in the results. I will use this as a demographic variable to report, but not as a predictor, so I didn’t think it was necessary to get to that level of detail, and wanted to try to trim the study and save time where possible. Ashkenazi generally falls within "white" or "caucasian" as a subcategory, same as French/Cajun (another high risk group.) It's a whole order of magnitude more specific than any of the other race categories, so for consistency's sake, I just left it as "white."

Question #25, 31-25
I’m not sure how this happened, but it seems to have reverted back to an old draft version. The corrections I had made were not saved. This is now corrected. This is very embarrassing on my end, but fortunately shouldn’t be catastrophic for data interpretation. This is still early in data collection (46 of 154 in so far) and I'm not sure if every response was affected.

Regardless, the majority of questionnaires will be the correct format. Even when the specific wording on several of those questions didn’t really fit, most are close. Each line item is a formatted as a 7-point likert scale, asking degree of a continuous variable with a low and high end. I think most people’s responses will be somewhat similar, though not identical. Thank you for clarifying your answer. I wouldn't worry about it, as these things often happen in behavioral research, and that's why we use pretty robust methods.

I clearly introduced some noise into the data and will almost certainly have to increase sample size to account for this. I’ll be going back through each item to see if the action I need to take to "clean" the data varies according to the specific question.

Thank you for bringing this to my attention!

 

[rygon]

answered the questions and didnt find any problems

 

[seebee]

I did the survey. The questions didn't give me any problems.
Good luck with your research!

 

[ForeverCrohns]

Did The survey! Good luck with your research amkatz ! We truly need more awareness and understanding from people who are dealing with us all the time!

 

[amkatz]

Quick update:
CCFA finally posted the study! It's been a few weeks since it was approved, but it's still exciting to see :smile:
http://www.ccfa.org/research/partic...dies-and-clinical-trials/quality-of-life.html

I'm up to 106 completed, and my sample is skewing heavily female (80.3%). ALL are welcome, and men are particularly needed.