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Table 1 Quality of Life and PRO assessments to evaluate disease burden and control

From: Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report

Assessment Application Number of items Recall period(s) Advantages Disadvantages
Angioedema Activity Score (AAS) [51] Recurrent angioedema 5 24 h Brief
Good internal consistency
Prospective nature limits compliance
HAE Activity Score (HAE-AS) [52] HAE-C1-INH 12 1 month and 6 months Allows for assessment of attack variability over time Requires accurate recall over 6 months
Angioedema Quality of Life
(AE-QoL) Questionnaire [57]
Recurrent angioedema 17 4 weeks Good psychometric properties
Good internal consistency
Time-consuming
Not HAE specific
Hereditary angioedema quality of life (HAE-QoL) [61] HAE-C1-INH 25 6 months HAE specific
Good internalconsistency
Time-consuming
Requires accurate recall over 6 months
United States Hereditary Angioedema Association Quality of Life (HAEA-QoL) Survey [65] HAE-C1-INH 27 NR NR Validation studies are needed
36-Item Short-Form Health Survey (SF-36) [54, 93] Generic health status 36 1 week and 4 weeks Useful for comparisons Less specific
Low sensitivity
EuroQol 5-Dimensions Survey (EQ-5D) [54, 94] Generic health status 5 No recall period Useful for comparisons
Easy to administer
Less specific
Low sensitivity
Angioedema Control Test (AECT) [59] Recurrent angioedema 4 4 weeks and 3 months Brief
Simple scoring
Validation studies are needed
  1. HAE, hereditary angioedema; HAE-C1-INH, HAE with C1-esterase inhibitor deficiency; NR, not reported; PRO, patient-reported outcome