Table 1.

Macro-areas of the interviews

Person identification and demographics	Clinical characteristics	Experience with the Centre	Impacts on personal and social life	Access to information and community
Age Gender Ethnicity Living Status Children Highest level of education Work status Residence Type of residence	Diagnosis Age of first symptoms Age of diagnosis Disease activity Other family members affected Number of treated attacks Emergency room visits Pharmacological treatment Side effects of pharmacological treatment Non-pharmacological treatment Surgeries Relationship with GP Psychological treatment Costs	Care pathway before the Centre How/ Why patient arrived to the Centre Waiting time First visit Subsequent/ usual visits Frequency of visits/ check-ups Appointment booking method Treatment/ activities in the Centre Relationship with personnel of the Centre Transportation mode to arrive to the Centre Distance to the Centre Areas of improvement	Physical activity Hobbies, interests Relationship with family Relationship with friends, acquaintances Physical restrictions due to medical condition Emotional impact of medical condition Social impact of medical condition Restrictions at the workplace/ school Support in the workplace/ school	Main source of information about the condition Involvement with a patients’ association Participation in HAE online forums/ social media Involvement with other HAE communities