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The AWESCORE, a patient-reported outcome measure: development, feasibility, reliability, validity and responsiveness for adults with cystic fibrosis

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dc.contributor.author Button, Brenda M.
dc.contributor.author Wilson, Lisa M.
dc.contributor.author Burge, Angela T.
dc.contributor.author Kimmel, Lara
dc.contributor.author Finlayson, Felicity
dc.contributor.author Williams, Elyssa
dc.contributor.author Talbot, Anthony
dc.contributor.author Tierney, Audrey C.
dc.contributor.author King, Susannah
dc.contributor.author Holland, Anne E.
dc.contributor.author Keating, Dominic
dc.contributor.author Kotsimbos, Tom
dc.contributor.author Wilson, John W.
dc.date.accessioned 2021-10-08T08:54:34Z
dc.date.available 2021-10-08T08:54:34Z
dc.date.issued 2021
dc.identifier.uri http://hdl.handle.net/10344/10655
dc.description peer-reviewed en_US
dc.description.abstract 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. en_US
dc.language.iso eng en_US
dc.publisher European Respiratory Society en_US
dc.relation.ispartofseries ERJ Open Research;7, 00120-2021
dc.subject CFQ-R scores en_US
dc.title The AWESCORE, a patient-reported outcome measure: development, feasibility, reliability, validity and responsiveness for adults with cystic fibrosis en_US
dc.type info:eu-repo/semantics/article en_US
dc.type.supercollection all_ul_research en_US
dc.type.supercollection ul_published_reviewed en_US
dc.identifier.doi 10.1183/23120541.00120-2021
dc.rights.accessrights info:eu-repo/semantics/openAccess en_US


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