We’ve been making an effort to reply to your comments and questions that you give us about the questionnaire. This is easy for us to do for those of you who use WebQuest, while those of you using the paper quest may get a phone call to answer your questions or clarify something you told us. Here are some of the most common things we hear about.
1. TOO LONG!!
Yes, it’s true that the questionnaire is long.We try to make it as easy as possible for you, but we must ask these questions in order to understand what effects you are getting from your treatment. You might try doing one page a day so that it doesn’t wear you out.
2. TOO Repetitive!
But if we’re trying to make it easy why do we include so many repetitive questions? Good point. Some of the questions are very similar or repetitive, but they are scored in different ways and are worded slightly differently. These questions originally come from standardized arthritis questionnaires. In order for the answers to be meaningful we have to leave all the questions in.
3. What if I can’t remember?
We understand that it may not always be possible for everyone to remember something that happened or started a long time ago. If you can’t remember the answer to a question or how you felt in the past, please give us your best guess.
4. What about my other disease?
The comments section is really the best place for any information you want to give us that we don’t ask about on the questionnaire. There are many, many diseases and conditions that people in the study have in addition to their rheumatic diseases. However, be sure to tell us ALL of the medications, supplements and treatments you are taking for ALL illnesses you have.We are able to learn a lot about your other conditions by knowing what you are taking.
5. This question does not apply to me
If you find a question that doesn’t seem to apply to you, you simply have to make the best choice, even though it may not seem completely correct for you.We try to make sure that the questions make sense for everyone and that all appropriate answers are listed. The answers are still useful to us. One of the big challenges of this kind of study is measuring subjective answers, which may explain why it’s sometimes hard to find just the right answer in the 3 or 4 choices available.
6. I can’t enter the right date
We ask about a few different time periods in the questionnaire. First, the main six-month period matches how often we give the questionnaire. The shorter periods, one week and four weeks, come from standard arthritis questionnaires. This time, for example, we don’t ask about hospitalizations after June 30th because 1) we hope that everybody does the questionnaire as soon as possible after the 30th, 2) we assume and hope that we will learn about the problem in the next questionnaire, and 3) it would be difficult for us to keep track of all the information from outside the date range. On WebQuest, the computer will not let you enter an incident that is out of the date range for that question. If you have a surgery in July, you’ll need to enter that in the next questionnaire. Please don’t use a wrong date.
7. My medications are not listed in WebQuest
WebQuest will only save medication information from one questionnaire to the next, so if you skip doing a questionnaire, you will need to re-enter your medications. This is the only way we can make sure that we have the latest information for each medication. Medications are perhaps the most important part of the questionnaire, so we can’t afford to risk having outdated information.
8. Why do you need to know my income?
Having a rheumatic disease can often limit your earning power by restricting the type of work you can perform and the amount of time you are able to work. By tracking income we can see the relationship between the severity of the disease, the effect of treatment and the ability to maintain your usual lifestyle. Income is also related to the quality of care received. The research we conduct with this information is very useful to health authorities as they make funding decisions and set public policy. Like all the other information in the survey, your income is confidential and is never visible to anyone outside the NDB in an identifiable way.
9. What if I don’t have "arthritis"?
Participants in the NDB can have any rheumatic disease, including Rheumatoid Arthritis, Osteoarthritis, Lupus, Scleroderma, Fibromyalgia, Ankylosing Spondilitis, and so on. For most of these conditions we need to ask the same questions, so it doesn’t make sense for us to create separate questionnaires for each disease.We use "Arthritis" as an umbrella term that really means any rheumatic disease. Also, some of the questions we ask come from standardized questionnaires, and we are not allowed to change the wording.
10. Pain levels vary too much to answer
Knowing how to mark pain severity or function can be difficult. If the question asks for a specific time period, such as the last 4 weeks, you should try to focus on that. If it asks about the last 6 months, it may be harder to remember, but you’re looking for an average of how you were over that period. It’s also perfectly normal to have high function at one point in the day and then worse function later or the next day. In the end, these kinds of questions are about your impressions about yourself, so there is no right or wrong answer. You just have to go with what you feel is right.