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Table 2 Cross-mapping of HRQoL concepts and themes identified from patient interviews with the AE-QoL questionnaire

From: Letting the patients speak: an in-depth, qualitative research-based investigation of factors relevant to health-related quality of life in real-world patients with hereditary angioedema using subcutaneous C1 inhibitor replacement therapy

Theme Concept AE-QoL coverage (AE-QoL item #)
Yes Partiallya No
HRQoL-related concepts
 HAE symptoms No or nearly no attacks    X
 Change in impact of triggers Stress/anxiety no longer a trigger    X
Sports no longer/less of a trigger   2  
 Emotional Less anxiety/worry caused by HAE 13, 14   
Disease no longer limiting 12   
Less depression/sadness caused by HAE 10   
Less embarrassed/self-conscious 3, 16   
 Work life/school Less sick leave 1   
Less missed school   1  
Improved mental work capacity   1  
Improved physical work capacity 1   
 Social life/leisure More able to travel   3  
More keeping/less canceling social plans   3, 4  
Spending more time with family/friends   3, 4  
Ashamed of going out in public 4, 15   
 Partner/family Improved relationship with children   2, 4  
Spouse/family needs to help less with administering medications    X
 Day-to-day activities Improvement in day-to-day tasks   2  
 Cognition Improved general cognition   9  
 Sleep/energy Improved energy/less fatigue   8  
Less trouble falling asleep 6   
Less waking at night due to attacks 7   
 Medical care Less ER/hospital visits    X
Less routine HCP visits    X
No reliance on HCP to administer    X
 Sports/exercise Improvement starting/resuming sports   2, 3  
 Diet/appetite Appetite is unaffected by abdominal attacks   5, 11  
Treatment-specific concepts
 Experience with HAE treatments Struggle to find a vein    X
Androgen side effects    X
 C1INH(SC) pros Would recommend C1INH(SC)    X
Self-administration/independence    X
Prefer non-IV administration method    X
Able to administer in public/on-the-go    X
 Experience with C1INH(SC) Ease of administration    X
Easy to remember to take    X
Confidence in use    X
Easy to learn to inject    X
 Long-term use No concerns about long-term use 17   
  1. Further detail on the cross-mapping between the AE-QoL questionnaire and patient interviews can be found in Additional file 2: Table S2
  2. AE-QoL Angioedema Quality of Life, C1INH(IV) intravenous C1 esterase inhibitor, ER emergency room, GERD gastroesophageal reflux disease, HAE hereditary angioedema
  3. a“Partially” indicates that AE-QoL items covering these topics were much more general/non-specific