TY - JOUR T1 - THE AWESCORE (Alfred Wellness Score) – a patient reported outcome measure (PROM): development, feasibility, reliability, validity and responsiveness for adults with cystic fibrosis JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00120-2021 SP - 00120-2021 AU - Brenda M. Button AU - Lisa M. Wilson AU - Angela T. Burge AU - Lara Kimmel AU - Felicity Finlayson AU - Elyssa Williams AU - Anthony Talbot AU - Audrey Tierney AU - Susannah King AU - Anne E. Holland AU - Dominic Keating AU - Tom Kotsimbos AU - John W. Wilson Y1 - 2021/01/01 UR - http://openres.ersjournals.com/content/early/2021/07/15/23120541.00120-2021.abstract N2 - Background Quality of life has improved dramatically over the past two decades in people with cystic fibrosis (CF). Quantification has been enabled by patient reported outcome measures (PROMs), however many are lengthy and can be challenging to use in routine clinical practice. We propose a short-form PROM that correlates well with established quality of life measures.Methods We evaluated the utility of a ten-item score (AWESCORE) by measuring reliability, validity and responsiveness in adults with CF. The questions were developed by thematic analysis of survey questions to patients in a single adult CF centre. Each question was scored using a numerical rating scale zero to 10. Total scores ranged from 0 to 100. Test-retest reliability was assessed over 24 h. To determine validity, comparisons were sought between stable subjects and those in pulmonary exacerbation, and between AWESCORE and CFQ-R. Responsiveness to pulmonary exacerbation in individual subjects was evaluated.Results Five domains, each with two questions, were identified for respiratory, physical, nutritional, psychological and general health. A total of 246 consecutive adults attending the Outpatient Clinic completed the AWESCORE. Scores were higher during clinical stability compared to pulmonary exacerbation (mean 73 [sd 11]) versus 48 [11], p<0.001). Each domain scored worse during an acute exacerbation (p<0.001). No differences in reliability were observed in scores on retesting using Bland-Altman comparison. The CFQ-R scores (mean 813 [sd125]) and AWESCORE (81 [13]) were moderately correlated (Pearson's r=0.649; p=0.002).Conclusions The AWESCORE is valid, reliable and responsive to altered health status in cystic fibrosis.FootnotesThis manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.Conflict of interest: Brenda M. Button has nothing to disclose.Conflict of interest: Lisa M. Wilson has nothing to disclose.Conflict of interest: Angela T. Burge has nothing to disclose.Conflict of interest: Lara Kimmel has nothing to disclose.Conflict of interest: Felicity Finlayson has nothing to disclose.Conflict of interest: Elyssa Williams has nothing to disclose.Conflict of interest: Anthony Talbot has nothing to disclose.Conflict of interest: Audrey Tierney has nothing to disclose.Conflict of interest: Susannah King has nothing to disclose.Conflict of interest: Anne E. Holland has nothing to disclose.Conflict of interest: Dominic Keating has nothing to disclose.Conflict of interest: Tom Kotsimbos has nothing to disclose.Conflict of interest: John W. Wilson has nothing to disclose. ER -