Table S1.

AE-QoL domain structure

Domain	Items
Functioning	Impairment in any of the following: work; physical activity; spare-time activities; social relations (4 items)
Fatigue/mood	Difficulties in falling asleep; waking up during the night; feeling tired during the day; difficulties in concentrating; feeling downhearted (5 items)
Fears/shame	Feeling burdened at having swellings; fear of new, suddenly appearing swellings; fear of increased frequency of swellings; ashamed to visit public places; embarrassed by the appearance of swellings; fear of long-term negative drug effects (6 items)
Nutrition	General limitations in foods and eating; limitations in the selection of foods and beverages (2 items)

Note Each item has a five-point response scale ranging from 1 (never) to 5 (very often); raw scores are transformed linearly to a 0–100 scale. The questionnaire has a recall period of 4 weeks.