Skip to main content
Top
Gepubliceerd in:

30-06-2016

Asymmetric responsiveness of disability and health-related quality of life to improvement versus decline in Parkinson’s disease

Auteurs: Dronacharya Lamichhane, Ann L. Gruber-Baldini, Stephen G. Reich, Lisa M. Shulman

Gepubliceerd in: Quality of Life Research | Uitgave 12/2016

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

Clinical trials in Parkinson’s disease commonly employ outcome measures of disability and quality of life. Responsiveness of these outcomes measures to symptomatic decline versus improvement has not been studied. We wanted to study the responsiveness of Schwab & England Activities of Daily Living Scale (SE) and Short Form-12 (SF-12) to symptomatic decline versus improvement in Parkinson’s disease over a 4-year period among a naturalistic cohort of patients.

Methods

Parkinson’s disease patients (N = 228, disease duration 6.1 years) were followed for 4 years with assessments of disease severity, Unified Parkinson’s Disease Rating Scale (UPDRS), health-related quality of life (SF-12 physical/mental health), and disability (SE). The sample was subdivided into those who declined (N = 118) or improved (N = 102) on total-UPDRS. Responsiveness was assessed with Cohen’s effect size and standardized response mean.

Results

At baseline, patients who improved over 4 years had greater disease severity and worse quality of life than decliners (p < .05). Decliners had a 13.5-point worsening on total-UPDRS, 26.3–39.8; p < .001) associated with concomitant decline on the SF-12 (physical health 42.9–39.2, mental health 50.0–46.6; both p < .001) and the SE (85–74 %; p < .001). Improvers had a 13.0-point improvement on total-UPDRS (39.8–26.8; p < .001) associated with minimal change on the SF-12 (physical health 40.8–39.5, mental health 47.1–46.3) and SE (79–79 %). Based on effect size, the rank order of responsiveness of measures for decliners from high to low was SE (−0.78), Short Form-12 mental health (−0.45), and SF-12 physical health (−0.34). Rank order of responsiveness for improvers was Short Form-12 physical health (−0.11), SF-12 mental health (−0.10), and SE (−0.03).

Conclusions

Among decliners, measures of disability and quality of life were moderate to highly responsive to change in disease severity. Among improvers, both disability and quality of life were poorly responsive despite UPDRS improvement of comparable magnitude.
Literatuur
2.
go back to reference Cella, D. F. (1995). Measuring quality of life in palliative care. Seminars in Oncology, 22(2 Suppl 3), 73–81.PubMed Cella, D. F. (1995). Measuring quality of life in palliative care. Seminars in Oncology, 22(2 Suppl 3), 73–81.PubMed
3.
go back to reference Forsaa, E. B., Larsen, J. P., Wentzel-Larsen, T., Herlofson, K., & Alves, G. (2008). Predictors and course of health-related quality of life in Parkinson’s disease. Movement Disorders, 23(10), 1420–1427. doi:10.1002/mds.22121.CrossRefPubMed Forsaa, E. B., Larsen, J. P., Wentzel-Larsen, T., Herlofson, K., & Alves, G. (2008). Predictors and course of health-related quality of life in Parkinson’s disease. Movement Disorders, 23(10), 1420–1427. doi:10.​1002/​mds.​22121.CrossRefPubMed
4.
go back to reference Karlsen, K. H., Tandberg, E., Arsland, D., & Larsen, J. P. (2000). Health related quality of life in Parkinson’s disease: A prospective longitudinal study. Journal of Neurology, Neurosurgery and Psychiatry, 69(5), 584–589.CrossRefPubMedPubMedCentral Karlsen, K. H., Tandberg, E., Arsland, D., & Larsen, J. P. (2000). Health related quality of life in Parkinson’s disease: A prospective longitudinal study. Journal of Neurology, Neurosurgery and Psychiatry, 69(5), 584–589.CrossRefPubMedPubMedCentral
5.
go back to reference Hely, M. A., Morris, J. G. L., Traficante, R., Reid, W. G. J., O’Sullivan, D. J., & Williamson, P. M. (1999). The Sydney multicentre study of Parkinson’s disease: Progression and mortality at 10 years. Journal of Neurology, Neurosurgery and Psychiatry, 67(3), 300–307. doi:10.1136/jnnp.67.3.300.CrossRefPubMedPubMedCentral Hely, M. A., Morris, J. G. L., Traficante, R., Reid, W. G. J., O’Sullivan, D. J., & Williamson, P. M. (1999). The Sydney multicentre study of Parkinson’s disease: Progression and mortality at 10 years. Journal of Neurology, Neurosurgery and Psychiatry, 67(3), 300–307. doi:10.​1136/​jnnp.​67.​3.​300.CrossRefPubMedPubMedCentral
6.
go back to reference Hely, M. A., Morris, J. G. L., Reid, W. G. J., & Trafficante, R. (2005). Sydney Multicenter Study of Parkinson’s disease: Non-L-dopa-responsive problems dominate at 15 years. Movement Disorders, 20(2), 190–199. doi:10.1002/mds.20324.CrossRefPubMed Hely, M. A., Morris, J. G. L., Reid, W. G. J., & Trafficante, R. (2005). Sydney Multicenter Study of Parkinson’s disease: Non-L-dopa-responsive problems dominate at 15 years. Movement Disorders, 20(2), 190–199. doi:10.​1002/​mds.​20324.CrossRefPubMed
7.
go back to reference Hely, M. A., Reid, W. G. J., Adena, M. A., Halliday, G. M., & Morris, J. G. L. (2008). The Sydney multicenter study of Parkinson’s disease: The inevitability of dementia at 20 years. Movement Disorders, 23(6), 837–844. doi:10.1002/mds.21956.CrossRefPubMed Hely, M. A., Reid, W. G. J., Adena, M. A., Halliday, G. M., & Morris, J. G. L. (2008). The Sydney multicenter study of Parkinson’s disease: The inevitability of dementia at 20 years. Movement Disorders, 23(6), 837–844. doi:10.​1002/​mds.​21956.CrossRefPubMed
8.
go back to reference Williams-Gray, C. H., Foltynie, T., Brayne, C. E. G., Robbins, T. W., & Barker, R. A. (2007). Evolution of cognitive dysfunction in an incident Parkinson’s disease cohort. Brain, 130(7), 1787–1798. doi:10.1093/brain/awm111.CrossRefPubMed Williams-Gray, C. H., Foltynie, T., Brayne, C. E. G., Robbins, T. W., & Barker, R. A. (2007). Evolution of cognitive dysfunction in an incident Parkinson’s disease cohort. Brain, 130(7), 1787–1798. doi:10.​1093/​brain/​awm111.CrossRefPubMed
10.
go back to reference Evans, J. R., Mason, S. L., Williams-Gray, C. H., Foltynie, T., Brayne, C., Robbins, T. W., & Barker, R. A. (2011). The natural history of treated Parkinson’s disease in an incident, community based cohort. Journal of Neurology, Neurosurgery and Psychiatry, 82(10), 1112–1118. doi:10.1136/jnnp.2011.240366.CrossRefPubMed Evans, J. R., Mason, S. L., Williams-Gray, C. H., Foltynie, T., Brayne, C., Robbins, T. W., & Barker, R. A. (2011). The natural history of treated Parkinson’s disease in an incident, community based cohort. Journal of Neurology, Neurosurgery and Psychiatry, 82(10), 1112–1118. doi:10.​1136/​jnnp.​2011.​240366.CrossRefPubMed
11.
go back to reference Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.CrossRefPubMed Ware, J. E., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.CrossRefPubMed
12.
go back to reference Hauser, R. A., Hsu, A., Kell, S., Espay, A. J., Sethi, K., Stacy, M., et al. (2013). Extended-release carbidopa-levodopa (IPX066) compared with immediate-release carbidopa-levodopa in patients with Parkinson’s disease and motor fluctuations: A phase 3 randomised, double-blind trial. The Lancet Neurology, 12(4), 346–356. doi:10.1016/S1474-4422(13)70025-5.CrossRefPubMed Hauser, R. A., Hsu, A., Kell, S., Espay, A. J., Sethi, K., Stacy, M., et al. (2013). Extended-release carbidopa-levodopa (IPX066) compared with immediate-release carbidopa-levodopa in patients with Parkinson’s disease and motor fluctuations: A phase 3 randomised, double-blind trial. The Lancet Neurology, 12(4), 346–356. doi:10.​1016/​S1474-4422(13)70025-5.CrossRefPubMed
14.
go back to reference Fahn, S., Elton, R., & Members of the UPDRS Development Committee. (1987). Unified Parkinson’s Disease Rating Scale. In S. Fahn, C. D. Marsden, D. B. Calne & M. Goldstein (Eds.), Recent developments in Parkinson’s disease (Vol. 2, pp. 153–164). Forest Park, NJ: Macmillan Health Care Information. Fahn, S., Elton, R., & Members of the UPDRS Development Committee. (1987). Unified Parkinson’s Disease Rating Scale. In S. Fahn, C. D. Marsden, D. B. Calne & M. Goldstein (Eds.), Recent developments in Parkinson’s disease (Vol. 2, pp. 153–164). Forest Park, NJ: Macmillan Health Care Information.
15.
go back to reference Martínez-Martín, P., Gil-Nagel, A., Gracia, L. M., Gómez, J. B., Martínez-Sarriés, J., & Bermejo, F. (1994). Unified Parkinson’s Disease Rating Scale characteristics and structure. The Cooperative Multicentric Group. Movement Disorders, 9(1), 76–83. doi:10.1002/mds.870090112.CrossRefPubMed Martínez-Martín, P., Gil-Nagel, A., Gracia, L. M., Gómez, J. B., Martínez-Sarriés, J., & Bermejo, F. (1994). Unified Parkinson’s Disease Rating Scale characteristics and structure. The Cooperative Multicentric Group. Movement Disorders, 9(1), 76–83. doi:10.​1002/​mds.​870090112.CrossRefPubMed
16.
go back to reference Schwab, R. S., & England, A. C. (1969). Projection technique for evaluating surgery in Parkinson’s disease. In F. J. Gillingham & I. M. L. Danoldson (Eds.), Third symposium on Parkinson’s disease (pp. 152–157). Edinburgh: Churchill Livingstone. Schwab, R. S., & England, A. C. (1969). Projection technique for evaluating surgery in Parkinson’s disease. In F. J. Gillingham & I. M. L. Danoldson (Eds.), Third symposium on Parkinson’s disease (pp. 152–157). Edinburgh: Churchill Livingstone.
17.
go back to reference Ware, J., Kosinski, M., & Keller, S. D. (1996). A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.CrossRefPubMed Ware, J., Kosinski, M., & Keller, S. D. (1996). A 12-Item Short-Form Health Survey: Construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3), 220–233.CrossRefPubMed
18.
go back to reference Pelle, A. J., Kupper, N., Mols, F., & de Jonge, P. (2013). What is the use? Application of the short form (SF) questionnaires for the evaluation of treatment effects. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 22(6), 1225–1230. doi:10.1007/s11136-012-0266-8.CrossRef Pelle, A. J., Kupper, N., Mols, F., & de Jonge, P. (2013). What is the use? Application of the short form (SF) questionnaires for the evaluation of treatment effects. Quality of Life Research: An International Journal of Quality of Life Aspects of Treatment, Care and Rehabilitation, 22(6), 1225–1230. doi:10.​1007/​s11136-012-0266-8.CrossRef
19.
go back to reference Martinez-Martin, P., Jeukens-Visser, M., Lyons, K. E., Rodriguez-Blazquez, C., Selai, C., Siderowf, A., et al. (2011). Health-related quality-of-life scales in Parkinson’s disease: Critique and recommendations. Movement Disorders, 26(13), 2371–2380. doi:10.1002/mds.23834.CrossRefPubMed Martinez-Martin, P., Jeukens-Visser, M., Lyons, K. E., Rodriguez-Blazquez, C., Selai, C., Siderowf, A., et al. (2011). Health-related quality-of-life scales in Parkinson’s disease: Critique and recommendations. Movement Disorders, 26(13), 2371–2380. doi:10.​1002/​mds.​23834.CrossRefPubMed
20.
go back to reference Martinez-Martin, P., Prieto, L., & Forjaz, M. J. (2006). Longitudinal metric properties of disability rating scales for Parkinson’s disease. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 9(6), 386–393. doi:10.1111/j.1524-4733.2006.00131.x.CrossRef Martinez-Martin, P., Prieto, L., & Forjaz, M. J. (2006). Longitudinal metric properties of disability rating scales for Parkinson’s disease. Value in Health: The Journal of the International Society for Pharmacoeconomics and Outcomes Research, 9(6), 386–393. doi:10.​1111/​j.​1524-4733.​2006.​00131.​x.CrossRef
21.
go back to reference Hoehn, M. M., & Yahr, M. D. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17(5), 427–442.CrossRefPubMed Hoehn, M. M., & Yahr, M. D. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17(5), 427–442.CrossRefPubMed
22.
go back to reference Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–198.CrossRefPubMed Folstein, M. F., Folstein, S. E., & McHugh, P. R. (1975). “Mini-mental state”: A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12(3), 189–198.CrossRefPubMed
24.
go back to reference Linn, B. S., Linn, M. W., & Gurel, L. (1968). Cumulative illness rating scale. Journal of the American Geriatrics Society, 16(5), 622–626.CrossRefPubMed Linn, B. S., Linn, M. W., & Gurel, L. (1968). Cumulative illness rating scale. Journal of the American Geriatrics Society, 16(5), 622–626.CrossRefPubMed
25.
go back to reference Cohen, J. (1998). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale: Lawrence Earlbaum Associates. Cohen, J. (1998). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale: Lawrence Earlbaum Associates.
26.
go back to reference Liang, M. H. (1995). Evaluating measurement responsiveness. The Journal of Rheumatology, 22(6), 1191–1192.PubMed Liang, M. H. (1995). Evaluating measurement responsiveness. The Journal of Rheumatology, 22(6), 1191–1192.PubMed
27.
go back to reference Shulman, L. M., Gruber-Baldini, A. L., Anderson, K. E., Fishman, P. S., Reich, S. G., & Weiner, W. J. (2010). The clinically important difference on the unified Parkinson’s disease rating scale. Archives of Neurology, 67(1), 64–70. doi:10.1001/archneurol.2009.295.CrossRefPubMed Shulman, L. M., Gruber-Baldini, A. L., Anderson, K. E., Fishman, P. S., Reich, S. G., & Weiner, W. J. (2010). The clinically important difference on the unified Parkinson’s disease rating scale. Archives of Neurology, 67(1), 64–70. doi:10.​1001/​archneurol.​2009.​295.CrossRefPubMed
28.
go back to reference Schrag, A., Sampaio, C., Counsell, N., & Poewe, W. (2006). Minimal clinically important change on the unified Parkinson’s disease rating scale. Movement Disorders, 21(8), 1200–1207. doi:10.1002/mds.20914.CrossRefPubMed Schrag, A., Sampaio, C., Counsell, N., & Poewe, W. (2006). Minimal clinically important change on the unified Parkinson’s disease rating scale. Movement Disorders, 21(8), 1200–1207. doi:10.​1002/​mds.​20914.CrossRefPubMed
29.
go back to reference Hauser, R. A., Gordon, M. F., Mizuno, Y., Poewe, W., Barone, P., Schapira, A. H., et al. (2014). Minimal clinically important difference in Parkinson’s disease as assessed in pivotal trials of pramipexole extended release. Parkinson’s Disease, 2014(2014), e467131. doi:10.1155/2014/467131. Hauser, R. A., Gordon, M. F., Mizuno, Y., Poewe, W., Barone, P., Schapira, A. H., et al. (2014). Minimal clinically important difference in Parkinson’s disease as assessed in pivotal trials of pramipexole extended release. Parkinson’s Disease, 2014(2014), e467131. doi:10.​1155/​2014/​467131.
30.
go back to reference Merola, A., Zibetti, M., Angrisano, S., Rizzi, L., Ricchi, V., Artusi, C. A., et al. (2011). Parkinson’s disease progression at 30 years: A study of subthalamic deep brain-stimulated patients. Brain, 134(Pt 7), 2074–2084. doi:10.1093/brain/awr121.CrossRefPubMed Merola, A., Zibetti, M., Angrisano, S., Rizzi, L., Ricchi, V., Artusi, C. A., et al. (2011). Parkinson’s disease progression at 30 years: A study of subthalamic deep brain-stimulated patients. Brain, 134(Pt 7), 2074–2084. doi:10.​1093/​brain/​awr121.CrossRefPubMed
31.
go back to reference Zibetti, M., Merola, A., Rizzi, L., Ricchi, V., Angrisano, S., Azzaro, C., et al. (2011). Beyond nine years of continuous subthalamic nucleus deep brain stimulation in Parkinson’s disease. Movement Disorders, 26(13), 2327–2334. doi:10.1002/mds.23903.CrossRefPubMed Zibetti, M., Merola, A., Rizzi, L., Ricchi, V., Angrisano, S., Azzaro, C., et al. (2011). Beyond nine years of continuous subthalamic nucleus deep brain stimulation in Parkinson’s disease. Movement Disorders, 26(13), 2327–2334. doi:10.​1002/​mds.​23903.CrossRefPubMed
32.
go back to reference Duarte, J., García Olmos, L. M., Mendoza, A., & Clavería, L. E. (2013). The natural history of Parkinson’s disease in the province of Segovia: Mortality in a longitudinal study (20-year follow-up). Acta Neurologica Scandinavica, 127(5), 295–300. doi:10.1111/ane.12003.CrossRefPubMed Duarte, J., García Olmos, L. M., Mendoza, A., & Clavería, L. E. (2013). The natural history of Parkinson’s disease in the province of Segovia: Mortality in a longitudinal study (20-year follow-up). Acta Neurologica Scandinavica, 127(5), 295–300. doi:10.​1111/​ane.​12003.CrossRefPubMed
33.
34.
go back to reference Cella, D., Hahn, E. A., & Dineen, K. (2002). Meaningful change in cancer-specific quality of life scores: Differences between improvement and worsening. Quality of Life Research, 11(3), 207–221.CrossRefPubMed Cella, D., Hahn, E. A., & Dineen, K. (2002). Meaningful change in cancer-specific quality of life scores: Differences between improvement and worsening. Quality of Life Research, 11(3), 207–221.CrossRefPubMed
35.
go back to reference Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine (1982), 48(11), 1507–1515.CrossRef Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine (1982), 48(11), 1507–1515.CrossRef
36.
go back to reference Tubach, F., Dougados, M., Falissard, B., Baron, G., Logeart, I., & Ravaud, P. (2006). Feeling good rather than feeling better matters more to patients. Arthritis Care and Research, 55(4), 526–530. doi:10.1002/art.22110.CrossRefPubMed Tubach, F., Dougados, M., Falissard, B., Baron, G., Logeart, I., & Ravaud, P. (2006). Feeling good rather than feeling better matters more to patients. Arthritis Care and Research, 55(4), 526–530. doi:10.​1002/​art.​22110.CrossRefPubMed
37.
go back to reference Lang, A. E., Eberly, S., Goetz, C. G., Stebbins, G., Oakes, D., Marek, K., et al. (2013). Movement disorder society unified Parkinson disease rating scale experiences in daily living: Longitudinal changes and correlation with other assessments. Movement Disorders, 28(14), 1980–1986. doi:10.1002/mds.25671.CrossRefPubMed Lang, A. E., Eberly, S., Goetz, C. G., Stebbins, G., Oakes, D., Marek, K., et al. (2013). Movement disorder society unified Parkinson disease rating scale experiences in daily living: Longitudinal changes and correlation with other assessments. Movement Disorders, 28(14), 1980–1986. doi:10.​1002/​mds.​25671.CrossRefPubMed
38.
go back to reference Middel, B., & van Sonderen, E. (2002). Statistical significant change versus relevant or important change in (quasi) experimental design: Some conceptual and methodological problems in estimating magnitude of intervention-related change in health services research. International Journal of Integrated Care, 2, e15.CrossRefPubMedPubMedCentral Middel, B., & van Sonderen, E. (2002). Statistical significant change versus relevant or important change in (quasi) experimental design: Some conceptual and methodological problems in estimating magnitude of intervention-related change in health services research. International Journal of Integrated Care, 2, e15.CrossRefPubMedPubMedCentral
Metagegevens
Titel
Asymmetric responsiveness of disability and health-related quality of life to improvement versus decline in Parkinson’s disease
Auteurs
Dronacharya Lamichhane
Ann L. Gruber-Baldini
Stephen G. Reich
Lisa M. Shulman
Publicatiedatum
30-06-2016
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 12/2016
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-016-1351-1

Andere artikelen Uitgave 12/2016

Quality of Life Research 12/2016 Naar de uitgave