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Table 2 Recommended list of questions to assess burden of disease in patients with HAE

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

Are there any activities that you avoid because of your HAE?

How often do you experience HAE attacks?

How would you describe the severity of your HAE attacks? (0 = no impairment; 4 = complete disablement)

How often does HAE cause you to miss work, school, or activities at home?

How often do you have to use acute rescue medication for each HAE attack and do you feel that you respond well?

What is the average time from attack onset to treatment administration? Time to initial symptom relief? Time to complete resolution of symptoms?

Have you had any changes in life status that may affect the activity of your HAE?

How often do you experience fear/anxiety/depression associated with your HAE?

Have you had any difficulties accessing or administering your acute or prophylactic HAE treatment?

To what extent has HAE interfered with your social life, family, relationships, or physical activities?

How often have you had to visit the hospital for an HAE attack?

Have you made any lifestyle modifications in an effort to avoid attack triggers?

  1. HAE, hereditary angioedema