Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema

Journal of Patient-Reported Outcomes

Table 1 Signs/symptoms and HRQoL impacts on patients, as reported by clinical experts

Sign/symptom or impact	N = 7
HAE signs/symptoms^a
Swelling	7
Pain (general, abdominal, facial)	7
Difficulty breathing/suffocating	6
Nausea/vomiting	6
Bloating	4
Rash/erythema	4
Swallowing difficulties	3
Voice change/dysphonia	3
Talking difficulties	2
Skin tightness	2
HRQoL impacts^b
Anxiety/fear/depression	7
Work/school	7
Concern for family history (e.g., passing on HAE to children)	6
Mobility/functioning	6
Leisure/daily activities	6
Travel/vacation	5
Psychological issues	4
Social life/relationships	4
Food triggers/loss of appetite	2
Tiredness/fatigue	2

HAE hereditary angioedema; HRQoL health-related quality of life
^a The following signs/symptoms were each reported by one clinical expert: headache, diarrhea, cramping, skin irritation, bowel wall obstruction, numbness/tingling
^b The following HRQoL impacts were each reported by one clinical expert: sleep disorder, swallowing, stress, problems with urination/bowels, concentration problems