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Patient-reported outcome measurement in cystic fibrosis

This programme of work aims to:

  • Develop and evaluate patient-reported outcome measures (e.g. health-related quality of life; pulmonary exacerbations).
  • Evaluate the use of health-related quality of life measures in clinical trials.
  • Evaluate cross-cultural differences in health-related quality of life.
  • Identify the demographic, clinical and psychological factors that explain patient-reported health-related quality of life
  • Evaluate the associations between health-related quality of life, disease progression and survival.

Project lead

Professor Janice Abbott

Project staff

Dr Margaret Hurley

Collaborators

National Collaborators: Professor Kevin Webb, South Manchester NHS Trust; Dr Steve Conway, Alison Morton, Leeds NHS Trust; Dr Helen Rodgers, Gail Milne, Tayside University Hospital NHS Trust; Professor Stuart Elborn Queen’s University and Belfast City Hospital; Dr Judy Bradley, University of Ulster

International collaborators: Dr Uli Baumann, University Medical School Hanover, Germany; Professor Fiorella Monti, Dr Francesca Lupi, Dr Francesca Gobbi, University of Bologna, Italy; Dr Trudy Havermans, Kris Colpaert, University Hospital Leuven, Belgium

Public Outputs

Gee, L., Abbott, J., Conway, S., Etherington, Webb, AK. (2000). Development and validation of a disease specific health related quality of life measure for adults and adolescents with cystic fibrosis. Thorax, 55 (11), 946-954.

Abbott, J., Bauman, U., Gee, L., Conway, S., Etherington, C., Webb, AK. (2001) Cross cultural differences in health related quality of life in adolescents with cystic fibrosis. Disability and Rehabilitation,23,837-844.

Gee, L., Abbott, J., Conway, S., Etherington, Webb, AK. (2002). Validation of the SF-36 for the assessment of Quality of Life in adolescents and adults with cystic fibrosis. Journal of Cystic Fibrosis 1:137-145.

Abbott, J., Gee, L. (2003) Quality of life in children and adolescents with cystic fibrosis: implications for optimizing treatments and clinical trial design. Paediatric Drugs;5:41-56. (Invited submission)

Gee, L., Abbott, J., Conway, S., Etherington, Webb, AK. (2003). Quality of life in cystic fibrosis; the importance of disease severity and gender. Journal of Cystic Fibrosis;2:206-213.

Abbott J, Hart A. (2005). Measuring and reporting quality of life outcomes in clinical trials in cystic fibrosis: a critical review. Health and Quality of Life Outcomes;3;19. http://www.hqlo.com/contents/3/1/19 (Invited submission)

Gee, L., Abbott, J., Hart A, Conway, S., Etherington, Webb, AK. (2005). Associations
between clinical variables and quality of life in adults with cystic fibrosis. Journal of Cystic Fibrosis;4:59-66.

Abbott, J., Conway, S., Etherington, C., Fitzjohn, J., Gee, L., Morton, A., Musson, H., Webb, AK. (2007). Nutritional status, perceived body image and eating behaviours in adults with cystic fibrosis. Clinical Nutrition;26:91-99. 

 

Doring G, Elborn JS, Johannesson M, for the Consensus Study Group (2007). Clinical trials in cystic fibrosis. Journal of Cystic Fibrosis;6:85-99.

Monti F, Lupi F, Agostini F, Miano A, Gobbi F, Abbott J. Validation of the Italian version of the Cystic Fibrosis Quality of Life Questionnaire (CFQoL), a disease specific measure for adults and adolescents with cystic fibrosis. Journal of Cystic Fibrosis 2008;7:116-122.

Abbott J, Hart A, Morton A. Gee L, Conway S. Health-related quality of life in adults with cystic fibrosis: the role of coping. Journal of Psychosomatic Research 2008;64:149-157.

Abbott J. Health-related quality of life measurement in cystic fibrosis: advances and limitations. Chronic Respiratory Disease 2009;6:31-41.

Abbott J, Hart A, Morton AM, Dey P, Conway SP, Webb AK. Can health-related quality of life predict survival in adults with cystic fibrosis? American Journal of Respiratory and Critical Care Medicine 2009;17:954-58.

Abbott J, Holt A, Hart A, Morton AM, MacDougall L, Pogson M, Milne G, Rodgers HC, Conway SP. What defines a pulmonary exacerbation? Perceptions of adults with cystic fibrosis. Journal of Cystic Fibrosis 2009;8:356–359

Abbott J, Hart A, Havermans T, Matossian A, Goldbeck L, Barreto C, Bergsten-Brucefors A, Besier T, Catastini P, Lupi F & Staab D. Measuring health-related quality of life in clinical trials in cystic fibrosis. Journal of Cystic Fibrosis 2011;10:2;S82-S85.

Abbott J, Holt A, Morton AM, Hart A, Milne G, Wolfe S, Conway SP. Patient indicators of a pulmonary exacerbation: preliminary reports from children map onto those of adults. Journal of Cystic Fibrosis 2012;11:180-186.

Abbott J, Hurley M, Morton A, Conway SP. Longitudinal Association between Lung Function and Health-Related Quality of Life in Cystic Fibrosis. Thorax 2013;68:149-54.