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

Autor: Brenda M. Button, Lisa M. Wilson, Angela T. Burge, Lara Kimmel, Felicity Finlayson, Elyssa Williams, Anthony Talbot, Audrey Tierney, Susannah King, Anne E. Holland, Dominic Keating, Tom Kotsimbos, John W. Wilson
Jazyk: angličtina
Rok vydání: 2021
Předmět:
Zdroj: ERJ Open Research, Vol 7, Iss 3 (2021)
Druh dokumentu: article
ISSN: 2312-0541
23120541
DOI: 10.1183/23120541.00120-2021
Popis: 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
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