We use our own cookies and third parties ones to offer our services and collect statistical data. If you continue browsing the internet you accept them. More information
Despite their importance in chronic disease management, no dedicated AATD PRO exists. No studies used PROs which included assessment of liver-related symptoms, extra-pulmonary manifestations of AATD, or concerns related to genetics or finances which may impact on QOL in AATD. A specific AATD-PRO is therefore required.
To validate a new specific PRO for AATD individuals in populations outside Birmingham in English speaking patients, and to test if it works in other languages, and assess utility in clinical practice.
English speaking sites within EARCO will be asked to complete the new PRO as an optional extra within the EARCO protocol (n=200 patients). Cross-sectional comparison of PRO score to disease severity and QOL will be conducted, stratified by country, compared between countries and the original Birmingham cohort (n=70)
Validation in language(s) other than English
Forward translations into Spanish by translation software and an independent translator will be merged into one, back translated into English, checked by a panel of 5-10 native Spanish speakers (including patients) from mainland Spain, reaching consensus on final content via a focus group. Similar native speaker review prior to use in South-Central America is also needed. To test construct validity we will do test-retest within 7 days (n=50 patients). To test criterion validity and maximise feasibility simultaneously we will conduct the first test alongside a usual EARCO review and the second remotely by self-completion of the PRO. Criterion validity can be assessed by comparison of the result from the new PRO to SGRQ and CAT