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Thorax 2000;55:946-954 ( November )

Development of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis

L Geea, J Abbottb, S P Conwayc, C Etheringtonc, A K Webbd

a Department of Psychology, University of Central Lancashire, Preston PR1 2HE, UK, b Postgraduate School of Medicine and Health, c Adult Cystic Fibrosis Unit, Seacroft Hospital, Leeds LS14 6UH, UK, d Adult Cystic Fibrosis Unit, Wythenshawe Hospital, Manchester M23 9LT, UK

Correspondence to: Dr L Gee, Department of Clinical Psychology, University of Wales, Bangor, Gwynedd LL57 2DG, UK

Received 1 February 2000; Returned to authors 10 April 2000; Revised version received 11 July 2000; Accepted for publication 8 August 2000

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.


Keywords: health related quality of life; questionnaire; cystic fibrosis

© 2000 by Thorax


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