Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis
Open accessAbstract
BACKGROUND: Health related quality of life (HRQoL) measurement is important in determining the impact of disease on daily functioning and subsequently informing interventions. In cystic fibrosis (CF) generic HRQoL measures have been employed but these may not be sufficiently specific. The aim of the current work was to develop and validate a disease specific HRQoL measure for adults and adolescents with cystic fibrosis. METHODS: Areas of concern to adults and adolescents with CF were identified by unstructured interviews, self-administered questionnaires, consultation with multidisciplinary specialist staff, a review of the relevant literature, and examination of other HRQoL measures. Items for the questionnaire were generated on the basis of this process. Continued evaluation and development of the Cystic Fibrosis Quality of Life (CFQoL) questionnaire was undertaken by a process of statistical analysis and continued feedback from patients. The full testing and validation of the CFQoL questionnaire took place over four phases: (1) initial item generation and testing of a preliminary questionnaire, (2) testing and validation of the second version of the questionnaire, (3) test-retest reliability of a third and final version of the questionnaire, and (4) sensitivity testing of the final version of the questionnaire. RESULTS: Nine domains of functioning were identified using principal components analysis with varimax rotation. Internal reliability of the identified domains was demonstrated using Cronbach alpha coefficients (range 0.72-0.92) and item to total domain score correlations. Concurrent validity (range r = 0.64-0.74), discriminatory ability between different levels of disease severity, sensitivity across transient changes in health (effect size range, moderate d = 0.56 to large d = 1.95), and test-retest reliability (r = 0.74-0.96) were also found to be robust. CONCLUSIONS: The CFQoL questionnaire is a fully validated disease specific measure consisting of 52 items across nine domains of functioning which have been identified by, and are of importance to, adolescents and adults with cystic fibrosis. This measure will be useful in clinical trials and longitudinal studies.
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One trial (Quinn 2004) assessed QoL using scores on the CFQoL (Gee 2000).
“One trial (Quinn 2004) assessed QoL using scores on the CFQoL (Gee 2000).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Gee 2000
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- Authors
- Gee, L.
- Affiliations
- University of Lancashire (GB)
- Corresponding author
- Gee, L
- Venue
- Thorax
- Publisher
- BMJ
- Published
- 2000-11-01
- Volume
- 55
- Issue
- 11
- Pages
- 946-954
- ISSN
- 0040-6376 (ISSN-L)
- PMC
- PMC1745639
- OpenAlex
- W2142930532
- Cited by
- 272
- References
- 24
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 7 · 2023: 8 · 2022: 10 · 2021: 12 · 2020: 14 · 2019: 9 · 2018: 13 · 2017: 9 · 2016: 12 · 2015: 18 · 2014: 16 · 2013: 10 · 2012: 16
- FWCI
- 4.78
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Thorax (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Topics
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Social Sciences › Education › Health Education and Validation
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- cystic fibrosis, health-related quality of life, disease-specific questionnaire, questionnaire development, questionnaire validation, adolescents, adults, test-retest reliability, sensitivity to change, concurrent validity, item generation
- MeSH terms
- Adolescent, Adult, Cystic Fibrosis, Female, Health Status, Humans, Life Style, Male, Middle Aged, Quality of Life, Surveys and Questionnaires, Sensitivity and Specificity, Reproducibility of Results
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