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      Psychometric performance of the CFQ-R-8D compared to the EQ-5D-3L and SF-6D in people with cystic fibrosis

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          Abstract

          Objective

          This study aimed to compare the psychometric performance of the Cystic Fibrosis Questionnaire–Revised–8 Dimensions (CFQ-R-8D), a new, condition-specific, preference-based measure, with that of generic preference-based measures EQ-5D-3L and Short Form 6 dimensions (SF-6D).

          Methods

          Data from three trials of participants with CF aged ≥ 14 years who completed the CFQ-R and EQ-5D-3L or SF-6D were used. Analyses were undertaken to evaluate convergent validity based on correlations with CFQ-R domain scores. Known-group validity was assessed based on percent predicted forced expiratory volume in one second and pulmonary exacerbations. Responsiveness was based on correlation of change and sensitivity to change based on change in symptom severity. Effect sizes and standardized response means were estimated.

          Results

          CFQ-R-8D utilities and dimensions were strongly correlated with most of the overlapping CFQ-R domain scores (ρ > 0.5); EQ-5D-3L and SF-6D utilities and dimensions had moderate (ρ > 0.3) to strong correlations in dimensions capturing similar concepts. All measures showed evidence of known-group validity ( P < 0.05). Change correlations were strong for CFQ-R-8D utilities and dimensions and CFQ-R, but they were moderate for SF-6D and mostly weak ((ρ > 0.1) for EQ-5D-3L. The SF-6D had the largest mean change over time and effect sizes, followed by CFQ-R-8D and then EQ-5D-3L. Neither CFQ-R-8D or SF-6D utility scores had ceiling effects (< 9% responses in full health) compared with those of EQ-5D-3L (61-62%). In participants classified as being in full health by EQ-5D-3L, CFQ-R-8D captured CF-specific health problems, particularly cough, abdominal pain, and breathing difficulty.

          Conclusions

          The CFQ-R-8D reflected known-group differences and changes over time with stronger evidence of good psychometric performance than EQ-5D-3L and similar evidence as SF-6D. Additionally, the CFQ-R-8D captured more condition-specific symptoms than EQ-5D-3L or SF-6D, which are important determinants of health-related quality of life for people with CF.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s41687-024-00697-w

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          Most cited references18

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          A power primer.

          Jacob Cohen (1992)
          One possible reason for the continued neglect of statistical power analysis in research in the behavioral sciences is the inaccessibility of or difficulty with the standard material. A convenient, although not comprehensive, presentation of required sample sizes is provided here. Effect-size indexes and conventional values for these are given for operationally defined small, medium, and large effects. The sample sizes necessary for .80 power to detect effects at these levels are tabled for eight standard statistical tests: (a) the difference between independent means, (b) the significance of a product-moment correlation, (c) the difference between independent rs, (d) the sign test, (e) the difference between independent proportions, (f) chi-square tests for goodness of fit and contingency tables, (g) one-way analysis of variance, and (h) the significance of a multiple or multiple partial correlation.
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            The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes.

            Lidwine B Mokkink, Caroline B Terwee, Donald L Patrick … (2010)
            Lack of consensus on taxonomy, terminology, and definitions has led to confusion about which measurement properties are relevant and which concepts they represent. The aim was to clarify and standardize terminology and definitions of measurement properties by reaching consensus among a group of experts and to develop a taxonomy of measurement properties relevant for evaluating health instruments. An international Delphi study with four written rounds was performed. Participating experts had a background in epidemiology, statistics, psychology, and clinical medicine. The panel was asked to rate their (dis)agreement about proposals on a five-point scale. Consensus was considered to be reached when at least 67% of the panel agreed. Of 91 invited experts, 57 agreed to participate and 43 actually participated. Consensus was reached on positions of measurement properties in the taxonomy (68-84%), terminology (74-88%, except for structural validity [56%]), and definitions of measurement properties (68-88%). The panel extensively discussed the positions of internal consistency and responsiveness in the taxonomy, the terms "reliability" and "structural validity," and the definitions of internal consistency and reliability. Consensus on taxonomy, terminology, and definitions of measurement properties was reached. Hopefully, this will lead to a more uniform use of terms and definitions in the literature on measurement properties. Copyright 2010 Elsevier Inc. All rights reserved.
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              Modeling valuations for EuroQol health states.

              Paul Dolan (1997)
              It has become increasingly common for preference-based measures of health-related quality of life to be used in the evaluation of different health-care interventions. For one such measure, The EuroQol, designed to be used for these purposes, it was necessary to derive a single index value for each of the 243 health states it generates. The problem was that it was virtually impossible to generate direct valuations for all of these states, and thus it was necessary to find a procedure that allows the valuations of all EuroQol states to be interpolated from direct valuations on a subset of these. In a recent study, direct valuations were elicited for 42 EuroQol health states (using the time trade-off method) from a representative sample of the UK population. This article reports on the methodology that was adopted to build up a "tariff" of EuroQol values from this data. A parsimonious model that fits the data well was defined as one in which valuations were explained in terms of the level of severity associated with each dimension, an intercept associated with any move away from full health, and a term that picked up whether any dimension in the state was at its most severe level. The model presented in this article appears to predict the values of the states for which there are direct observations and, thus, can be used to interpolate values for the states for which no direct observations exist.
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                Author and article information

                Contributors
                Clara Mukuria:
                ORCID: http://orcid.org/0000-0003-4318-1481
                c.mukuria@sheffield.ac.uk
                Journal
                Journal ID (nlm-ta): J Patient Rep Outcomes
                Journal ID (iso-abbrev): J Patient Rep Outcomes
                Title: Journal of Patient-Reported Outcomes
                Publisher: Springer International Publishing (Cham )
                ISSN (Electronic): 2509-8020
                Publication date (Electronic): 28 February 2024
                Publication date PMC-release: 28 February 2024
                Publication date Collection: December 2024
                Volume: 8
                Electronic Location Identifier: 24
                Affiliations
                [1 ]School of Health and Related Research, The University of Sheffield, ( https://ror.org/05krs5044) Sheffield, UK
                [2 ]GRID grid.518569.6, ISNI 0000 0004 7700 0746, Acaster Lloyd Consulting Ltd, ; London, UK
                [3 ]GRID grid.422219.e, ISNI 0000 0004 0384 7506, Vertex Pharmaceuticals Incorporated, ; Boston, MA USA
                [4 ]Joe DiMaggio Cystic Fibrosis, Pulmonary and Sleep Center, Hollywood, FL USA
                Author information
                http://orcid.org/0000-0003-4318-1481
                Article
                Publisher ID: 697
                DOI: 10.1186/s41687-024-00697-w
                PMC ID: 10900011
                PubMed ID: 38416239
                SO-VID: 3a96a953-dfa3-448f-a171-33bff2894e62
                Copyright © © The Author(s) 2024
                License:

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/.

                History
                Date received : 15 June 2023
                Date accepted : 4 February 2024
                Funding
                Funded by: Vertex Pharmaceuticals Incorporated
                Award ID: Vertex Pharmaceuticals Incorporated
                Categories
                Subject: Research
                Custom metadata
                issue-copyright-statement © International Society for Quality of Life Research (ISOQOL) 2024

                Keywords: cost utility,cystic fibros,cystic fibrosis questionnaire-revised,cystic fibrosis questionnaire–revised–8 dimensions,eq-5d-3l,patient-reported outcomes,quality of life,short form 6 dimensions; sf-6d,short form 6 dimensions
                Data availability:
                Keywords: cost utility, cystic fibros, cystic fibrosis questionnaire-revised, cystic fibrosis questionnaire–revised–8 dimensions, eq-5d-3l, patient-reported outcomes, quality of life, short form 6 dimensions; sf-6d, short form 6 dimensions

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