Table 1.
Items included in the first version of the MetabQoL 1.0 for self-assessmenta
| Items included based on item analysisb | Scale | |
|---|---|---|
| 1 | Does it bother you that you are not allowed to eat anything you want? | Physical |
| 2 | Does it bother you that you have to eat even when you are not hungry? | Physical |
| 3 | Does it bother you that you have to take medications? | Physical |
| 4 | Does the taste of your medications bother you? | Physical |
| 5 | Does it bother you that you have regular check-ups? | Physical |
| 6 | Are you afraid of having blood taken? | Physical |
| 7 | Do you worry that you may have to go to the hospital due to an emergency? | Physical |
| 8 | Do you worry about the results of your blood test? | Physical |
| 9 | Does your metabolic disorder bother you when you are playing or during other activities? | Physical |
| 10 | Does it bother you that you cannot move as well as others? | Physical |
| 11 | Does it bother you that you get tired quickly? | Physical |
| 12 | Does it bother you that you often feel sick to your stomach? | Physical |
| 13 | Does it bother you that you have a feeding tube? | Physical |
| 14 | Do you have trouble keeping up in school/in your apprenticeship because of your metabolic disorder? | Mental |
| 15 | Are you happy? | Mental |
| 16 | Are you worried about your metabolic disorder? | Mental |
| 17 | Are you sad because you have a metabolic disorder? | Mental |
| 18 | Are you angry at having a metabolic disorder? | Mental |
| 19 | Are you afraid of the future because of your metabolic disorder? | Mental |
| 20 | Are you having problems doing things with friends because of your metabolic disorder? | Social |
| 21 | Are others less willing to be friends with you because of your metabolic disorder? | Social |
| 22 | Does it bother you that your parents or others in your family are particularly worried about you because of the metabolic disorder? | Social |
| 23 | Does it bother you that people treat you differently because of your metabolic disorder? | Social |
| 24 | Does it bother you that many people do not understand your metabolic disorder? | Social |
| 25 | Do you get left out because of your metabolic disorder? | Social |
| 26 | Does it bother you when other people feel sorry for you? | Social |
| 27 | How bad were your problems with your metabolic disorder over the last 12 months? | Severity |
| 28 | In the past 12 months, how often did you have to be admitted to the hospital in an emergency? | Severity |
aThe proxy assessment questionnaire consists of parallel rephrased items (e.g. item 1: Does it bother your child that he/she is not allowed to eat anything he/she wants?)
bAnswering options: never, seldom, sometimes, often, always (items 1–26); not bad at all, slightly bad, medium bad, bad, very bad (item 27); never, once, twice, three to five times, six times or more (item 28)