Table I.
Patient-reported outcome measures (PROMs) for recurrent angioedema
| AAS | AE-QoL | AECT | HAE-AS | HAE-QoL | |
|---|---|---|---|---|---|
| Validated | Yes | Yes | Yes | Yes | Yes |
| Time requirement, min | < 1 | < 5 | < 5 | < 5 | < 5 |
| Data collection | Daily prospectively | 4-week recall period | 4-week or 3-month recall period | 1-month and 6-month recall period | 6-month recall period |
| Number of questions | 1 if no attack. 6 if attack. | 17 | 4 | 12 | 25 |
| Score | 0–15 | 0–100 | 0–16 | 0–29 | 25–135 |
| Dimensions | 1 | 4 | 1 | 1 | 7 |
| Designed for | Adultsa with recurrent angioedema (AE) | Adultsa with recurrent AE | Adultsa with recurrent AE | Adultsa with HAE and C1-INH deficiency | Adultsa with HAE and C1-INH deficiency |
| Measures | Disease activity | HRQoL | Disease control | Disease activity | HRQoL |
| Administered | Self-administered questionnaire | Self-administered questionnaire | Self-administered questionnaire | Self-administered questionnaire | Self-administered questionnaire |
| Available in the following Nordic languages | Danish, Finnish, Norwegian, Swedish, Icelandicb | Danish, Swedish, Finnish, Icelandicb | Danish, Swedish, Norwegianc | Danish | Danish |
| Distributed by | MOXIE – https://moxie-gmbh.de | MOXIE – https://moxie-gmbh.de | MOXIE – https://moxie-gmbh.de | DV-HAE-QoL Study Group.Bibliopro.orgd | DV-HAE-QoL Study Group.Bibliopro.orgd |
a
>18 years.
b
Translation was performed bypatient organization HAE Scandinavia (but not linguistically validated).
c
Structured translation process is ongoing, linguistically validated version will be available shortly.
d
Foundation of Biomedical Research of La Paz University Hospital-IdiPAZ (FIBHULP) holds the copyright.
AAS: Angioedema Activity Score; AE-QoL: Angioedema Quality of life Questionnaire; AECT: Angioedema Control Test; HAE-AS: Hereditary Angioedema Activity Score; HAE-QoL: Hereditary Angioedema Quality of Life.