Table 1 Concerns and comments from expert committee explaining wording modifications in the Italian version of the “Quality of Life in Epidermolysis Bullosa” (QOLEB) and “Epidermolysis Bullosa Burden of Disease” (EB-BoD) questionnaires
QOLEB questionnaire | ||
Question N | Concerns | Discussion and final choice |
5 | Last answer option: in Italy, the term “nutrition” is mostly used by healthcare professionals and not by lay people | It was decided to replace “nutrition” with “feed myself”, in order to ensure better understanding of the answer option |
7 | The expression “involvement in sports” is not really used in Italian | It was decided to replace “involvement in sports”, which sounds awkward in Italian, with “sport activities” |
13 | The last answer option of the question states “…restricts my social interaction”. Social interaction is a phrase not commonly used in Italian | It was decided to replace “social interaction” with “social life”, to use a more familiar phrase |
15 | The term “financially” is not usually used to indicate disease costs and economic consequences for families (but for companies, firms, etc.) | It was decided to replace “financially” with “economically”, which more closely reflects the use of this term in everyday life and family settings |
17 | The passive form “how uncomfortable are you made to feel by others…” is not used in Italian | A more direct wording: “How uncomfortable do others make you feel…” was chosen |
EB-BoD questionnaire | ||
Question N | Concerns | Discussion and final choice |
13 | The expression “…the odor produced by skin disease….” is not used in Italian | “…the odor produced by skin disease….” Was replaced by “….the odor caused by….” |
15 | The French expression “…faire garder mon enfant…” [“…find child care…” – in the English version], as well as the English one, do not have a direct equivalent in Italian | ”…faire garder mon enfant…” was replaced by “… to find a person who takes care of my child…” |
19 and 20 | The term “Each time” does not fit with the possible answer options [e.g., “never”, “rarely”, etc.] in both questions | It was decided to replace the term “Each time” with “When” |