TY - JOUR T1 - The AWESCORE, a patient-reported outcome measure: development, feasibility, reliability, validity and responsiveness for adults with cystic fibrosis JF - ERJ Open Research JO - erjor DO - 10.1183/23120541.00120-2021 VL - 7 IS - 3 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 - 2021/07/01 UR - http://openres.ersjournals.com/content/7/3/00120-2021.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 10-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 0 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 Cystic Fibrosis Questionnaire – Revised (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± sd): 73±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±sd: 813±125) 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 CF.The AWESCORE: a new, short patient-reported outcome measure for adults with cystic fibrosis in clinical settings. It is feasible, valid, reliable and responsive to change, and developed to enhance communication and decision-making in clinical practice. https://bit.ly/2TWDaj3 ER -