Table 1.
Characteristics and availability of relevant patient-reported outcome measures for disease activity and QoL impairment in HAE.
HAE-AS | AAS | HAE-QoL | AE-QoL | |
---|---|---|---|---|
Number of items (questions) | 12 (once) | 1–6 (everyday) | 25 (once) | 17 (once) |
Recall period | 6 months | 1 day | 6 months | 4 weeks |
Applicable in HAE 1/2 | + | + | + | + |
Applicable in other forms of recurrent angioedema | − | + | − | + |
Assessment | Retrospective | Prospective | Retrospective | Retrospective |
High level of patient compliance required | − | + | − | − |
Clinical important difference published | − | + | − | + |
Cost-free use in routine patient management and investigator-initiated clinical research | + | + | + | + |
Different language versions availablea | American-English, Spanish | American-English, Azeri, Canadian-English, Canadian-French, Danish, Dutch, French, German, Greek, Hebrew, Hungarian, Italian, Japanese, Macedonian, Mexican-Spanish, Polish, Portuguese, Romanian, Russian, Slovakian, Spanish, Swedish, Turkish | Argentinien-Spanish, Austrian-German, Brazilian-Portuguese, Canadian-English, Canadian-French, Danish, French, German, Greek, Hebrew, Hungarian, Italian, Macedonian Mandarin-Chinese, Polish, Romanian, Spanish, US-English, UK-English | American-English, Azeri, Canadian-English, Canadian-French, Danish, Dutch, French, German, Greek, Hebrew, Hungarian, Italian, Japanese, Jordan-Arabic, Macedonian, Mexican-Spanish, Polish, Portuguese, Puerto Rican-Spanish, Romanian, Russian, Slovakian, Spanish, Swedish, Turkish |
AAS, angioedema activity score; AE-QoL, angioedema quality of life questionnaire; HAE-AS, hereditary angioedema activity score; HAE-QoL, hereditary angioedema quality of life questionnaire.
aAdditional language versions of the HAE-AS and HAE-QoL (check www.idipaz.es for updates) and the AAS and AE-QoL (check www.moxie-gmbh.de for updates) are in preparation.