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Gepubliceerd in: Quality of Life Research 7/2014

01-09-2014

Psychometric properties of quality of life and health-related quality of life assessments in people with multiple sclerosis

Auteurs: Y. C. Learmonth, E. A. Hubbard, E. McAuley, R. W. Motl

Gepubliceerd in: Quality of Life Research | Uitgave 7/2014

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Abstract

Purpose

There is substantial interest in testing interventions for improving quality of life (QOL) and health-related quality of life (HRQOL) in people with multiple sclerosis (MS). Yet, there is limited research on the psychometric properties of QOL [e.g., Satisfaction with Life Scale (SWLS), Leeds MS Quality of Life Scale (LMSQOL)] and HRQOL [e.g., Short Form 12 Health Survey (SF-12) and Multiple Sclerosis Impact Scale-29 (MSIS-29)] measures in this population. Such research is important for designing and interpreting interventions. We examined the test–retest reliability, measurement error, and interpretability of QOL (i.e., SWLS and LMSQOL) and HRQOL (i.e., SF-12 and MSIS-29) measures over 6 months in people with MS.

Methods

Individuals with MS (n = 274) completed the SWLS, LMSQOL, SF-12 and MSIS-29 on two occasions, 6 months apart. We estimated test–retest reliability [intraclass correlation coefficient (ICC)], measurement error [standard error of measurement (SEM) and coefficient of variation] and interpretability [smallest detectable change (SDC)].

Results

Intraclass correlation coefficient values ranged between moderate and good (ICC range = 0.669–0.883); the MSIS-29 physical component had the best reliability, and the SF-12 mental component had the worst reliability. Measurement error, based on percent SEM, varied among measures; the physical and mental components of the SF-12 (%SEM = 4.6 and 5.3, respectively) had the best measurement error, and the MSIS-29 mental component (%SEM = 13.2) and the SWLS (%SEM = 12.7) had the worst measurement error. Interpretability, based on percent SDC, varied among measures; interpretability was best for the physical and mental components of the SF-12 (%SDC = 12.7 and 14.7, respectively) and worst for the MSIS-29 mental component (%SDC = 36.7) and the SWLS (%SDC = 35).

Conclusion

We provide novel data for helping researchers and clinicians select and interpret QOL and HRQOL measures and scores for interventions among people with MS. Such information will better inform our understanding of intervention effectiveness.
Literatuur
1.
go back to reference Fayers, P. M., & Hays, R. D. (2005). Assessing quality of life in clinical trials: Methods and practice. Oxford: Oxford University Press. Fayers, P. M., & Hays, R. D. (2005). Assessing quality of life in clinical trials: Methods and practice. Oxford: Oxford University Press.
3.
go back to reference Mitchell, A. J., Benito-Leon, J., Gonzalez, J. M., & Rivera-Navarro, J. (2005). Quality of life and its assessment in multiple sclerosis: Integrating physical and psychological components of wellbeing. Lancet Neurology, 4(9), 556–566. doi:10.1016/S1474-4422(05)70166-6.PubMedCrossRef Mitchell, A. J., Benito-Leon, J., Gonzalez, J. M., & Rivera-Navarro, J. (2005). Quality of life and its assessment in multiple sclerosis: Integrating physical and psychological components of wellbeing. Lancet Neurology, 4(9), 556–566. doi:10.​1016/​S1474-4422(05)70166-6.PubMedCrossRef
6.
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. doi:10.2307/3765916.PubMedCrossRef 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. doi:10.​2307/​3765916.PubMedCrossRef
7.
go back to reference McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31(3), 247–263. doi:10.2307/3765819.PubMedCrossRef McHorney, C. A., Ware, J. E., & Raczek, A. E. (1993). The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Medical Care, 31(3), 247–263. doi:10.​2307/​3765819.PubMedCrossRef
8.
go back to reference Lobentanz, I. S., Asenbaum, S., Vass, K., Sauter, C., Klösch, G., Kollegger, H., et al. (2004). Factors influencing quality of life in multiple sclerosis patients: Disability, depressive mood, fatigue and sleep quality. Acta Neurologica Scandinavica, 110(1), 6–13. doi:10.1111/j.1600-0404.2004.00257.x.PubMedCrossRef Lobentanz, I. S., Asenbaum, S., Vass, K., Sauter, C., Klösch, G., Kollegger, H., et al. (2004). Factors influencing quality of life in multiple sclerosis patients: Disability, depressive mood, fatigue and sleep quality. Acta Neurologica Scandinavica, 110(1), 6–13. doi:10.​1111/​j.​1600-0404.​2004.​00257.​x.PubMedCrossRef
9.
go back to reference Lankhorst, G. J., Jelles, F., Smits, R. C., Polman, C. H., Kuik, D. J., Pfennings, L. E., et al. (1996). Quality of life in multiple sclerosis: The disability and impact profile (DIP). Journal of Neurology, 243(6), 469–474.PubMedCrossRef Lankhorst, G. J., Jelles, F., Smits, R. C., Polman, C. H., Kuik, D. J., Pfennings, L. E., et al. (1996). Quality of life in multiple sclerosis: The disability and impact profile (DIP). Journal of Neurology, 243(6), 469–474.PubMedCrossRef
13.
go back to reference De Vet, H., Terwee, C. B., Mokkink, L. B., & Knol, D. L. (2011). Measurement in medicine. Cambridge: Cambridge University Press.CrossRef De Vet, H., Terwee, C. B., Mokkink, L. B., & Knol, D. L. (2011). Measurement in medicine. Cambridge: Cambridge University Press.CrossRef
14.
go back to reference DeVellis, R. F. (1991). Scale development: Theory and applications (Vol. 26). Thousand Oaks: Sage. DeVellis, R. F. (1991). Scale development: Theory and applications (Vol. 26). Thousand Oaks: Sage.
15.
go back to reference Denegar, C. R., & Ball, D. W. (1993). Assessing reliability and precision of measurement: An introduction to intraclass correlation and standard error of measurement. Journal of Sport Rehabilitation, 2(1), 35–42. Denegar, C. R., & Ball, D. W. (1993). Assessing reliability and precision of measurement: An introduction to intraclass correlation and standard error of measurement. Journal of Sport Rehabilitation, 2(1), 35–42.
16.
go back to reference Beckerman, H., Roebroeck, M. E., Lankhorst, G. J., Becher, J. G., Bezemer, P. D., & Verbeek, A. L. M. (2001). Smallest real difference, a link between reproducibility and responsiveness. Quality of Life Research, 10(7), 571–578.PubMedCrossRef Beckerman, H., Roebroeck, M. E., Lankhorst, G. J., Becher, J. G., Bezemer, P. D., & Verbeek, A. L. M. (2001). Smallest real difference, a link between reproducibility and responsiveness. Quality of Life Research, 10(7), 571–578.PubMedCrossRef
17.
go back to reference Motl, R. W., & McAuley, E. (2009). Pathways between physical activity and quality of life in adults with multiple sclerosis. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 28(6), 682–689. doi:10.1037/a0015985.CrossRef Motl, R. W., & McAuley, E. (2009). Pathways between physical activity and quality of life in adults with multiple sclerosis. Health Psychology: Official Journal of the Division of Health Psychology, American Psychological Association, 28(6), 682–689. doi:10.​1037/​a0015985.CrossRef
18.
go back to reference Ford, H. L., Gerry, E., Tennant, A., Whalley, D., Haigh, R., & Johnson, M. H. (2001). Developing a disease-specific quality of life measure for people with multiple sclerosis. Clinical Rehabilitation, 15(3), 247–258. doi:10.1191/02692150167365810.PubMedCrossRef Ford, H. L., Gerry, E., Tennant, A., Whalley, D., Haigh, R., & Johnson, M. H. (2001). Developing a disease-specific quality of life measure for people with multiple sclerosis. Clinical Rehabilitation, 15(3), 247–258. doi:10.​1191/​0269215016736581​0.PubMedCrossRef
19.
go back to reference Ware, J. E, Jr, 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.PubMedCrossRef Ware, J. E, Jr, 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.PubMedCrossRef
20.
go back to reference Ware, J. E, Jr, Kosinski, M., & Keller, S. D. (1998). SF-12: How to score the SF-12 physical and mental health summary scales (3rd ed.). Lincoln, Rhode Island: Quality Metric Incorporated. Ware, J. E, Jr, Kosinski, M., & Keller, S. D. (1998). SF-12: How to score the SF-12 physical and mental health summary scales (3rd ed.). Lincoln, Rhode Island: Quality Metric Incorporated.
21.
go back to reference Nortvedt, M. W., Riise, T., Myhr, K. M., & Nyland, H. I. (2000). Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Medical Care, 38(10), 1022–1028.PubMedCrossRef Nortvedt, M. W., Riise, T., Myhr, K. M., & Nyland, H. I. (2000). Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Medical Care, 38(10), 1022–1028.PubMedCrossRef
23.
26.
go back to reference Streiner, D. L., & Norman, G. R. (2008). Health measurement scales: A practical guide to their development and use. London: Oxford University Press.CrossRef Streiner, D. L., & Norman, G. R. (2008). Health measurement scales: A practical guide to their development and use. London: Oxford University Press.CrossRef
27.
go back to reference Atkinson, G., & Nevill, A. M. (1998). Statistical methods for assessing measurement error (reliability) in variables relevant to sports medicine. Sports Medicine (Auckland, N. Z.), 26(4), 217–238.CrossRef Atkinson, G., & Nevill, A. M. (1998). Statistical methods for assessing measurement error (reliability) in variables relevant to sports medicine. Sports Medicine (Auckland, N. Z.), 26(4), 217–238.CrossRef
28.
go back to reference Paltamaa, J., West, H., Sarasoja, T., Wikström, J., & Mälkiä, E. (2005). Reliability of physical functioning measures in ambulatory subjects with MS. Physiotherapy Research International, 10(2), 93–109.PubMedCrossRef Paltamaa, J., West, H., Sarasoja, T., Wikström, J., & Mälkiä, E. (2005). Reliability of physical functioning measures in ambulatory subjects with MS. Physiotherapy Research International, 10(2), 93–109.PubMedCrossRef
30.
go back to reference Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates.
32.
go back to reference Pilutti, L. A., Dlugonski, D., Sandroff, B. M., Klaren, R., & Motl, R. W. (in press). Randomized Controlled Trial of a behavioral intervention targeting physical activity and symptoms in MS. Multiple Sclerosis Journal. doi:10.1177/13524585813503391. Pilutti, L. A., Dlugonski, D., Sandroff, B. M., Klaren, R., & Motl, R. W. (in press). Randomized Controlled Trial of a behavioral intervention targeting physical activity and symptoms in MS. Multiple Sclerosis Journal. doi:10.​1177/​1352458581350339​1.
35.
go back to reference Ponichtera-Mulcare, J. A., Mathews, T., Barrett, P. J., & Gupta, S. C. (1997). Change in aerobic fitness of patients with multiple sclerosis during a 6-month training program. Research in Sports Medicine: An International Journal, 7(3–4), 265–272. Ponichtera-Mulcare, J. A., Mathews, T., Barrett, P. J., & Gupta, S. C. (1997). Change in aerobic fitness of patients with multiple sclerosis during a 6-month training program. Research in Sports Medicine: An International Journal, 7(3–4), 265–272.
36.
go back to reference Rodgers, M. M., Mulcare, J. A., King, D. L., Mathews, T., Gupta, S. C., & Glaser, R. M. (1999). Gait characteristics of individuals with multiple sclerosis before and after a 6-month aerobic training program. Journal of Rehabilitation Research and Development, 36(3), 183–188.PubMed Rodgers, M. M., Mulcare, J. A., King, D. L., Mathews, T., Gupta, S. C., & Glaser, R. M. (1999). Gait characteristics of individuals with multiple sclerosis before and after a 6-month aerobic training program. Journal of Rehabilitation Research and Development, 36(3), 183–188.PubMed
37.
go back to reference Broekmans, T., Roelants, M., Feys, P., Alders, G., Gijbels, D., Hanssen, I., et al. (2011). Effects of long-term resistance training and simultaneous electro-stimulation on muscle strength and functional mobility in multiple sclerosis. Multiple Sclerosis Journal, 17(4), 468–477. doi:10.1177/1352458510391339.PubMedCrossRef Broekmans, T., Roelants, M., Feys, P., Alders, G., Gijbels, D., Hanssen, I., et al. (2011). Effects of long-term resistance training and simultaneous electro-stimulation on muscle strength and functional mobility in multiple sclerosis. Multiple Sclerosis Journal, 17(4), 468–477. doi:10.​1177/​1352458510391339​.PubMedCrossRef
38.
go back to reference Filipi, M. L., Kucera, D. L., Filipi, E. O., Ridpath, A. C., & Leuschen, M. P. (2011). Improvement in strength following resistance training in MS patients despite varied disability levels. NeuroRehabilitation, 28(4), 373–382. doi:10.3233/NRE-2011-0666.PubMed Filipi, M. L., Kucera, D. L., Filipi, E. O., Ridpath, A. C., & Leuschen, M. P. (2011). Improvement in strength following resistance training in MS patients despite varied disability levels. NeuroRehabilitation, 28(4), 373–382. doi:10.​3233/​NRE-2011-0666.PubMed
39.
go back to reference Filipi, M. L., Leuschen, M. P., Huisinga, J., Schmaderer, L., Vogel, J., Kucera, D., et al. (2010). Impact of resistance training on balance and gait in multiple sclerosis. International Journal of MS Care, 12(1), 6–11. doi:10.7224/1537-2073-12.1.6.CrossRef Filipi, M. L., Leuschen, M. P., Huisinga, J., Schmaderer, L., Vogel, J., Kucera, D., et al. (2010). Impact of resistance training on balance and gait in multiple sclerosis. International Journal of MS Care, 12(1), 6–11. doi:10.​7224/​1537-2073-12.​1.​6.CrossRef
41.
go back to reference Sandroff, B. M., Klaren, R., Pilutti, L. A., Dlugonski, D., Benedict, R. H., & Motl, R. W. (2014). A randomized controlled trial of physical activity, cognition, and walking in multiple sclerosis. Neurology, 261(2), 363–372. doi:10.1007/s00415-013-7204-8. Sandroff, B. M., Klaren, R., Pilutti, L. A., Dlugonski, D., Benedict, R. H., & Motl, R. W. (2014). A randomized controlled trial of physical activity, cognition, and walking in multiple sclerosis. Neurology, 261(2), 363–372. doi:10.​1007/​s00415-013-7204-8.
42.
go back to reference Motl, R. W., McAuley, E., & Klaren, R. (2014). Reliability of physical activity measures over 6 months in adults with multiple sclerosis: Implications for designing behavioral interventions. Behavioral Medicine, 40, 29–33. doi:10.1080/08964289.2013.82196. Motl, R. W., McAuley, E., & Klaren, R. (2014). Reliability of physical activity measures over 6 months in adults with multiple sclerosis: Implications for designing behavioral interventions. Behavioral Medicine, 40, 29–33. doi:10.​1080/​08964289.​2013.​82196.
43.
go back to reference Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis an expanded disability status scale (EDSS). Neurology, 33(11), 1444–1452.PubMedCrossRef Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis an expanded disability status scale (EDSS). Neurology, 33(11), 1444–1452.PubMedCrossRef
44.
go back to reference Costelloe, L., O’Rourke, K., Kearney, H., McGuigan, C., Gribbin, L., Duggan, M., et al. (2007). The patient knows best: Significant change in the physical component of the multiple sclerosis impact scale (MSIS-29 physical). Journal of Neurology, Neurosurgery and Psychiatry, 78(8), 841–844. doi:10.1136/jnnp.2006.105759.PubMedCentralPubMedCrossRef Costelloe, L., O’Rourke, K., Kearney, H., McGuigan, C., Gribbin, L., Duggan, M., et al. (2007). The patient knows best: Significant change in the physical component of the multiple sclerosis impact scale (MSIS-29 physical). Journal of Neurology, Neurosurgery and Psychiatry, 78(8), 841–844. doi:10.​1136/​jnnp.​2006.​105759.PubMedCentralPubMedCrossRef
45.
go back to reference Food and Drug Administration. (2009). Drug administration: Guidance for industry: Patient-reported outcome measures—Use in medical product development to support labeling claims. US Department of Health and Human Services, 235(74), 65132–65133. Food and Drug Administration. (2009). Drug administration: Guidance for industry: Patient-reported outcome measures—Use in medical product development to support labeling claims. US Department of Health and Human Services, 235(74), 65132–65133.
46.
48.
Metagegevens
Titel
Psychometric properties of quality of life and health-related quality of life assessments in people with multiple sclerosis
Auteurs
Y. C. Learmonth
E. A. Hubbard
E. McAuley
R. W. Motl
Publicatiedatum
01-09-2014
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 7/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-014-0639-2

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