Table 2 Impacts of HAE reported by patients during interviews
Impact, n (%) | Patients (N = 40) | Sample patient interview quotes |
|---|---|---|
Basic physical functions | “[…] when my foot is very swollen, I can’t walk anymore.” (France) | |
Walking | 19 (48) | |
Use of hands or arms | 9 (23) | |
Standing | 5 (13) | |
Sitting | 3 (8) | |
Activities of daily living | “They were abdominal attacks and they put me down in bed. I can’t get up […]”(United States) | |
Personal hygiene and dressing | 9 (23) | |
Bathing and showering | 4 (10) | |
Getting out of bed | 4 (10) | |
Getting to or using the toilet | 2 (5) | |
Instrumental activities of daily living | “[…] if there is an attack on my feet, for example, I cannot drive […] I could have gone to work but I could not move, I could not walk, I could not drive […] I had to take sick leave.” (France) | |
Driving | 8 (20) | |
Cleaning the house or doing laundry | 7 (18) | |
Shopping | 4 (10) | |
Cooking | 4 (10) | |
General household activities | 1 (3) | |
Emotional impact | “[…] since the time my face swelled up, it seems as though I’ve developed a kind of fear or anxiety that it might happen again, because in the face it’s most scary, because it’s so painful when the mouth and lips swell up and the fear is that it might go down into the airways and you won’t get to the hospital in time. So you develop a kind of anxiety, phobia, that it might come back […]” (Canada) | |
Stress or worry | 17 (43) | |
Fear and anxiety | 13 (33) | |
Shame or embarrassment | 13 (33) | |
Frustration | 6 (15) | |
Depression/sadness | 5 (13) | |
Hereditary concerns | 4 (10) | |
Anger | 3 (8) | |
Irritability | 2 (5) | |
Work/school | “[…] I am exhausted by my attacks and I realized that it’s no longer easy to work, in the end.” (France) | |
Work | 23 (58) | |
School or university | 9 (23) | |
Social | “[…] Well, there are moments where I completely isolate myself…I don’t leave the house, and I don’t see anybody and I certainly don’t want to see anybody. But even between the attacks, sometimes, there are times when I’m really tired, so I’m not in the mood to go out, I’m not in the mood to see anybody […].”(France) | |
Relationships | 22 (55) | |
Sleep and energy levels | “[…] I have a lot of pain before the attack, I already feel it in my body. I have a lot of joint pain. I’m tired, I sleep a lot.” (Canada) | |
Low energy levels or tiredness | 9 (23) | |
Difficulty sleeping | 5 (13) | |
Sleeping too much | 2 (5) | |
Recreation | “I also can’t do exercise if I’ve had an attack […] I love to do yoga, but I can’t do that if I’ve had an attack ‘cause it just puts too much pressure on points […] if you’ve had like an arm swelling, you can’t put that down on the ground and support yourself […].” (United Kingdom) | |
Physical exercise | 20 (50) | |
Leisure activities | 13 (33) | |
Ability to travel | 12 (30) | |
Eating and drinking | “I now know that tomatoes is a problem […] the amount of time I spend telling people in restaurants I’m allergic, answering weird questions about it from my friends and/or family, sending things back because they’ve brought me something with tomatoes…[the] inconvenience and worry and anxiety and just like, one more thing to think about and that extra thing that’s annoying.” (United Kingdom) | |
Eating and drinking difficulties | 11 (28) | |
Dietary restrictions | 7 (18) | |
Managing/living with HAE | “[…] I never really RSVP’d to anything because I never knew when the next bout would occur, or I had to cancel on short notice […].” (Germany) | |
Ability to plan ahead | 15 (38) | |
Difficulties related to clothing | 9 (23) | |
Lack of concentration | 1 (3) |