Abstract
Background
People with severe asthma experience significant respiratory symptoms and suffer adverse effects of oral corticosteroids (OCS), including disturbed mood and physical symptoms. OCS impacts on health-related quality of life (HRQoL) have not been quantified. Asthma HRQoL scales are valid as outcome measures for patients requiring OCS only if they assess the deficits imposed by OCS.
Aims
The aim of this study was to compare the burden of disease and treatment in patients with severe asthma with items in eight asthma-specific HRQoL scales.
Methods
Twenty-three patients with severe asthma recruited from a severe asthma clinic were interviewed about the impact of their respiratory symptoms and the burden of their treatment. The domains from a thematic analysis of these interviews were compared with the items of eight asthma-specific HRQoL scales.
Results
In addition to the burden caused by symptoms, ten domains of OCS impact on HRQoL were identified: depression, irritability, sleep, hunger, weight, skin, gastric, pain, disease anxiety, and medication anxiety. Some patients experienced substantial HRQoL deficits attributed to OCS. Although all HRQoL scales include some OCS-relevant items, all eight scales fail to adequately assess the several types of burden experienced by some patients while on OCS.
Conclusion
The burden of OCS in severe asthma is neglected in policy and practice because it is not assessed in outcome studies. Existing asthma HRQoL scales provide an overly positive estimation of HRQoL in patients with frequent exposure to OCS and underestimate the benefit of interventions that reduce OCS exposure. Changes to existing measurement procedures are needed.
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References
Jones, P. W. (1995). Quality of life measurement in asthma. European Respiratory Journal, 8, 885–887.
Hyland, M. E. (2003). A brief guide to the selection of quality of life instrument. Health Qual Life Outcomes, 1, 24–29.
Hyland, M. E. (1992). Selection of items and avoidance of bias in quality of life scales. Pharmacoeconomics, 1, 182–190.
Gamble, J., Fitzsimons, D., Lynes, D., & Heaney, L. G. (2007). Difficult asthma: People’s perspectives on taking corticosteroid therapy. Journal of Clinical Nursing, 16, 59–67.
Stevenson, F. A., Wallace, G., Rivers, P., & Gerrett, D. (1999). It’s the best of two evils’: A study of patients’ perceived information needs about oral steroids for asthma. Health Expectations, 2, 185–194.
Ethgen, O., de Lemos, Esteves. F., Bruyere, O., & Reginster, J. Y. (2013). What do we know about the safety of corticosteroids in rheumatoid arthritis? Current Medical Research & Opinion, 29, 1147–1160.
Fardet, L., Flahault, A., Kettaneh, A., et al. (2007). Corticosteroid-induced clinical adverse events: Frequency, risk factors and patient’s opinion. British Journal of Dermatology, 157, 142–148.
Brown, E. S., & Chandler, P. A. (2001). Mood and cognitive changes during systemic corticosteroid therapy. Primary Care Companion to the Journal of Clinical Psychiatry, 3, 17–21.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.
Reddel, H. K., Taylor, D. R., & Bateman, E. D. (2009). Official American Thoracic Society/European Respiratory Society Statement: Asthma control and exacerbations standardizing endpoints for clinical asthma trials and clinical practice. American Journal of Respiratory and Critical Care Medicine, 180, 59–99.
Juniper, E. F., Guyatt, G. H., Epstein, R. S., Ferrie, P. J., Jaeschke, R., & Hiller, T. K. (1992). Evaluation of impairment of health related quality of life in asthma: Development of a questionnaire for use in clinical trials. Thorax, 47, 76–83.
Juniper, E. F., Guyatt, G. H., Cox, F. M., Ferrie, P. J., & King, D. R. (1999). Development and validation of the Mini Asthma Quality of Life Questionnaire. European Respiratory Journal, 14, 32–38.
Hyland, M. E., Finnis, S., & Irvine, S. H. (1991). A scale for assessing quality of life in adult asthma sufferers. Journal of Psychosomatic Research, 35, 99–110.
Jones, P. W., Quirk, F. H., Baveystock, C. M., & Littlejohns, P. (1992). A self-complete measure of health status for chronic airflow limitation. The American Review of Respiratory Disease, 145, 1321–1327.
Marks, G. B., Dunn, S. M., & Woolcock, A. J. (1992). A scale for the measurement of quality of life in adults with asthma. Journal of Clinical Epidemiology, 45, 461–472.
Barley, E. A., Quirk, F. H., & Jones, P. W. (1998). Asthma health status measurement in clinical practice: Validity of a new short and simple instrument. Respiratory Medicine, 92, 1207–1214.
Hyland, M. E., Ley, A., Fisher, D. W., & Woodward, V. (1995). Measurement of psychological distress in asthma and asthma management programmes. British Journal of Clinical Psychology, 34, 601–611.
Castro, M., King, T. S., Kunselman, S. J., Cabana, M. D., Denlinger, L., Holguin, F., et al. (2014). Effect of vitamin D3 on asthma treatment failures in adults with symptomatic asthma and lower vitamin D levels: The VIDA randomized clinical trial. Journal of the American Medical Association, 311, 2083–2091.
Parry, G. D., Cooper, C. L., Moore, J. M., et al. (2012). Cognitive behavioural intervention for adults with anxiety complications of asthma: Prospective randomised trial. Respiratory Medicine, 106, 802–810.
Eberhart, N. K., Sherbourne, C. D., Edelen, M. O., Stucky, B. D., Sin, N. L., & Lara, M. (2013). Development of a measure of asthma-specific quality of life among adults. Quality of Life Research, 23, 837–848.
Gamble, J., Stevenson, M., McClean, E., & Heaney, L. G. (2009). The prevalence of nonadherence in difficult asthma. American Journal of Respiratory and Critical Care Medicine, 180, 817–822.
Meeus, M., & Nijs, J. (2007). Central sensitization: A biopsychosocial explanation for chronic widespread pain in patients with fibromyalgia and chronic fatigue syndrome. Clinical Rheumatology, 26, 465–473.
Apfelbacher, C. J., Hankins, M., Stenner, P., Frew, A. J., & Smith, H. E. (2011). Measuring asthma-specific quality of life: Structured review. Allergy, 2011(66), 439–457.
Apfelbacher, C., Weiß, M., Saur, J., Smith, H., & Loerbroks, A. (2012). Patients’ views on asthma-specific quality of life questionnaires: Qualitative interview study in Germany. Journal of Asthma, 2012(49), 875–883.
Brown, H. M. (1958). Treatment of chronic asthma with prednisolone. Lancet, 272, 1245–1247.
Hyland, M. E., Coward, G., Upchurch, F., & Jones, K. P. (1991). Asthma specific quality of life scale in a study of salmeterol hydroxynaphthoate. The British Journal of General Practice, 41, 214.
Milgrom, H., Fick, R. B., Su, J. Q., Reimann, J. D., Bush, R. K., Watrous, M. L., et al. (1999). Treatment of allergic asthma with monoclonal anti-IgE antibody. New England Journal of Medicine, 341, 1966–1973.
Pakhale, S., Wood-Dauphinee, S., Spahija, A., Collet, J. P., Maltais, F., Bernard, S., et al. (2012). Respiratory Network of the FRSQ. Validation of a new questionnaire with generic and disease-specific qualities: The McGill COPD Quality of Life Questionnaire. Canadian Respiratory Journal, 19, 367–372.
Acknowledgments
We thank Joe Lanario for help with manuscript preparation, Margaret Hart for help with recruiting patients, and the patients themselves for giving their time. This research was supported by an unrestricted medical education grant from Novartis UK.
Conflict of interest
All authors have received financial support from Novartis UK in relation to the research reported in this study.
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Hyland, M.E., Whalley, B., Jones, R.C. et al. A qualitative study of the impact of severe asthma and its treatment showing that treatment burden is neglected in existing asthma assessment scales. Qual Life Res 24, 631–639 (2015). https://doi.org/10.1007/s11136-014-0801-x
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DOI: https://doi.org/10.1007/s11136-014-0801-x
Keywords
- Severe asthma
- Difficult asthma
- Quality of life
- Treatment burden
- Assessment