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The online version of this article (doi:10.1007/s11136-015-1187-0) contains supplementary material, which is available to authorized users.
Cicely Kerr was working at ICON Patient Reported Outcomes, Oxford, UK, at the time the work was conducted.
Karissa Johnston was working at ICON Epidemiology, Vancouver, Canada, at the time the work was conducted.
Long-term levodopa therapy and related fluctuating plasma concentrations are associated with between-dose periods of ‘off time’ resulting in substantial variation in symptoms and functioning throughout the day in people with Parkinson’s (PwP).
PwP across UK, France, Spain and Italy completed an online survey to explore: the impact of ‘off time’ on (1) health-related quality of life (HRQL) and (2) on functioning and ability to undertake usual activities; (3) the value of ‘off time’ relative to other factors associated with Parkinson’s through a stated preference discrete choice experiment (SPDCE).
In total, 305 PwP completed the online survey. Overall mean HRQL (utility) score was significantly lower for ‘off time’ (0.37) than for ‘on time’ (0.60). All attributes within the SPDCE were significant predictors of treatment choice, although increased duration of ‘on time’ (per hour per day: odds ratio (OR) = 1.40) and predictability of ‘off time’ to within 30 min (OR = 1.42) were valued most highly.
‘On time’ and predictability of ‘off time’ are highly valued by PwP. Due to substantial diurnal variation of Parkinson’s symptoms, standard patient-reported outcome (PRO) assessments may not adequately capture the impact of ‘off time’ on HRQL and participation in daily activities.
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Supplementary material 1 (DOCX 17 kb)11136_2015_1187_MOESM1_ESM.docx
Weintraub, D., Comella, C. L., & Stacy, H. (2010). Parkinson’s disease—Part 1: Pathophysiology, symptoms, burden, diagnosis, and assessment. The American Journal of Managed Care, 14, S40–S48.
Montel, S., Bonnet, A. M., & Bungener, C. (2009). Quality of life in relation to mood, coping strategies, and dyskinesia in Parkinson’s disease. Journal of Geriatric Psychiatry, 22(2), 95–102. CrossRef
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101. CrossRef
Fahn, S., & Elton, R. L. (1987). Members of the UPDRS Development Committee. The United Parkinson’s Disease Rating Scale. In S. Fahn, C. D. Marsden, D. B. Caine, & M. Goldstein (Eds.), Recent developments in Parkinson’s disease, Vol 2 (pp. 153-163–293-304). Florham Park: Macmillian Healthcare Information.
McIntosh, E., Clarke, P., Frew, E., & Louviere, J. J. (2010). Applied methods of cost-benefit analysis in health care. In A. Gray & A. Briggs (Eds.), Handbooks in health economic evaluation. Oxford: Oxford University Press.
Ryan, M., & Gerard, K. (2003). Using discrete choice experiments to value health care programmes: Current practice and future research reflections. Applied health economics and health policy, 2(1), 55–64. PubMed
Ossa, D. F., Briggs, A., McIntosh, E., Cowell, W., Littlewood, T., & Sculpher, M. (2007). Using direct utility elicitation and discrete choice studies to assess the impact of chemotherapy-related anaemia on the health-related quality-of-life of cancer, and the value of rHu-EPO treatment. Pharmacoeconomics, 25(3), 223–237. CrossRefPubMed
Hattori, N., Fujimoto, K., Kondo, T., Murata, M., & Stacy, M. (2012). Patient perspectives on Parkinson’s disease therapy in Japan and the United States: Results of two patient surveys. Patient Related Outcomes Measures, 3, 31–38. CrossRef
Burgess, L., & Street, D. J. (2005). Optimal designs for choice experiments with asymmetric attributes. Journal of Statistical Physics, 134(1), 288–301.
Goetz, C. G., Tilley, B. C., Shaftman, S. R., Stebbins, G. T., Fahn, S., Martinez-Martin, P., et al. (2008). Movement Disorder Society-sponsored revision of the Unified Parkinson’s Disease Rating Scale (MDS-UPDRS): Scale presentation and clinimetric testing results. Movement Disorders, 23(15), 2129–2170. CrossRefPubMed
Morley, D., Dummett, S., Kelly, L., Dawson, J., Fitzpatrick, R., & Jenkinson, C. (2013). Development of the Oxford Participation & Activities Questionnaire: Semi structured interviews with potential users. Journal of the Neurological Sciences, 333, e651. CrossRef
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- Springer International Publishing