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Please read these instructions aloud to the participant
This questionnaire is about the level of disability that may be associated with inflammatory bowel disease. Please answer the following questions taking into account the effects your ileal pouch has had on you.
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* The first question is about your overall health, including both physical and mental health.
1. In general, how would you rate your health today? |
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Now I would like to review different functions of your body and activities of daily life.
When answering these questions, I would like you to think about the last week, taking both good and bad days into account. When I ask about difficulty/problem, I would like you to consider how much difficulty/problem you have had, on an average in the past week, while doing the activity in the way that you usually do it.
By difficulty I mean that you require increased effort, that you have discomfort or pain, or that the activity is slower or that there are other changes in the way you do the activity. When answering these questions, please take into account any assistance you have available. |
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* Sleep and Energy
2. Overall in the last week, how much of a problem did you have with sleeping, such as falling asleep, waking up frequently during the night or waking up too early in the morning? |
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| * 3. In the last week, how much of a problem did you have due to not feeling rested and refreshed during the day (e.g. feeling tired, not having energy)? |
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* Affect
4. Overall in the last week, how much of a problem did you have with feeling sad, low or depressed? |
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| * 5. Overall in the last week, how much of a problem did you have with worry or anxiety? |
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* Body Image
6. Overall in the last week, how much of a problem did you have with the way your body or body parts looked? |
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* Pain
7. Overall in the last week, how much of stomach or abdomen aches or pains did you have? |
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* Regulating defecation
8. Overall in the last week, how much difficulty did you have coordinating and managing defecation including choosing and getting to an appropriate place for defecation and cleaning oneself after defecation? |
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* Looking after one's health
9. Overall in the last week, how much difficulty did you have looking after your health, including maintaining a balanced diet? |
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* Interpersonal activities
10. Overall in the last week, how much difficulty did you have with personal relationships? |
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| * 11. Overall in the last week, how much difficulty did you have with participating in the community? |
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* Work and Education
12. Overall in the last week, how much difficulty did you have with work or household activities? |
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| * 13. Overall in the last week, how much difficulty did you have with school or studying activities? |
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| * Number of liquid or very soft stools in the last week: | | |
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| * Number of liquid or very soft stools in the last week: |
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| What is your height and weight? | | |
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| * Do you feel that you have lost weight in the last week? |
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| * Blood in stool (weekly average)? |
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| * Is arthritis or arthralgia present? |
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| Please rate the extent of the following aspects of the environment on whether it positively or negatively influenced your disease activity, body functions, and activities of daily life: |
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| * 14a. Overall in the last week, did the medication you took alleviate your problems and difficulties? |
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| * 14b. Overall in the last week, did the medication you took worsen your problems and difficulties? |
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| * 15a. Overall in the last week, did the food you ate alleviate your problems and difficulties? |
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| * 15b. Overall in the last week, did the food you ate worsen your problems and difficulties? |
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| * 16a. Overall in the last week, did your family alleviate your problems and difficulties? |
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| * 16b. Overall in the last week, did your family worsen your problems and difficulties? |
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| * 17a. Overall in the last week, did health professionals alleviate your problems and difficulties? |
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| * 17b. Overall in the last week, did health professionals worsen your problems and difficulties? |
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* Social security and health services, systems and policies
18. Do you get the support that you need from the health system? |
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| * 19. Do you receive the health care that you need? |
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| This is an optional part of the study, where you can choose to share with us any thoughts or comments you have from your experience of living with an ileal pouch. We also welcome any feedback about the study. | | |
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