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

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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.

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References

  1. Fayers, P. M., & Hays, R. D. (2005). Assessing quality of life in clinical trials: Methods and practice. Oxford: Oxford University Press.

    Google Scholar 

  2. Benito-Leon, J., Morales, J. M., Rivera-Navarro, J., & Mitchell, A. (2003). A review about the impact of multiple sclerosis on health-related quality of life. Disability and Rehabilitation, 25(23), 1291–1303. doi:10.1080/09638280310001608591.

    Article  PubMed  Google Scholar 

  3. 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.

    Article  PubMed  Google Scholar 

  4. Pavot, W., & Diener, E. (1993). Review of the satisfaction with life scale. Psychological Assessment, 5, 2. doi:10.1007/978-90-481-2354-4.

    Article  Google Scholar 

  5. Diener, E. D., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49(1), 71–75. doi:10.1207/s15327752jpa4901_13.

    Article  CAS  PubMed  Google Scholar 

  6. 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.

    Article  PubMed  Google Scholar 

  7. 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.

    Article  CAS  PubMed  Google Scholar 

  8. 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.

    Article  CAS  PubMed  Google Scholar 

  9. 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.

    Article  CAS  PubMed  Google Scholar 

  10. Naess, H., Beiske, A. G., & Myhr, K. M. (2008). Quality of life among young patients with ischaemic stroke compared with patients with multiple sclerosis. Acta Neurologica Scandinavica, 117(3), 181–185. doi:10.1111/j.1600-0404.2007.00923.x.

    Article  CAS  PubMed  Google Scholar 

  11. Rudick, R. A., Miller, D., Clough, J. D., Gragg, L. A., & Farmer, R. G. (1992). Quality of life in multiple sclerosis. Comparison with inflammatory bowel disease and rheumatoid arthritis. Archives of Neurology, 49(12), 1237–1242. doi:10.1001/archneur.1992.00530360035014.

    Article  CAS  PubMed  Google Scholar 

  12. US National Institutes of Health. (2013). ClinicalTrials.gov. ClinicalTrials.gov. Retrieved August 1, 2013, from http://clinicaltrials.gov/.

  13. De Vet, H., Terwee, C. B., Mokkink, L. B., & Knol, D. L. (2011). Measurement in medicine. Cambridge: Cambridge University Press.

    Book  Google Scholar 

  14. DeVellis, R. F. (1991). Scale development: Theory and applications (Vol. 26). Thousand Oaks: Sage.

    Google Scholar 

  15. 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.

    Google Scholar 

  16. 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.

    Article  CAS  PubMed  Google Scholar 

  17. 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.

    Article  Google Scholar 

  18. 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.

    Article  CAS  PubMed  Google Scholar 

  19. 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.

    Article  PubMed  Google Scholar 

  20. 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.

    Google Scholar 

  21. 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.

    Article  CAS  PubMed  Google Scholar 

  22. Hobart, J., Lamping, D., Fitzpatrick, R., Riazi, A., & Thompson, A. (2001). The multiple sclerosis impact scale (MSIS-29): A new patient-based outcome measure. Brain, 124(Pt 5), 962–973. doi:10.1093/brain/124.5.962.

    Article  CAS  PubMed  Google Scholar 

  23. Riazi, A., Hobart, J. C., Lamping, D. L., Fitzpatrick, R., & Thompson, A. J. (2002). Multiple sclerosis impact scale (MSIS-29): Reliability and validity in hospital based samples. Journal of Neurology, Neurosurgery and Psychiatry, 73(6), 701–704. doi:10.1136/jnnp.73.6.701.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  24. Rizzo, M. A., Hadjimichael, O. C., Preiningerova, J., & Vollmer, T. L. (2004). Prevalence and treatment of spasticity reported by multiple sclerosis patients. Multiple Sclerosis, 10(5), 589–595. doi:10.1191/1352458504ms1085oa.

    Article  CAS  PubMed  Google Scholar 

  25. Learmonth, Y. C., Motl, R. W., Sandroff, B. M., Pula, J. H., & Cadavid, D. (2013). Validation of patient determined disease steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurology. doi:10.1186/1471-2377-13-37.

    PubMed Central  PubMed  Google Scholar 

  26. Streiner, D. L., & Norman, G. R. (2008). Health measurement scales: A practical guide to their development and use. London: Oxford University Press.

    Book  Google Scholar 

  27. 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.

    Article  CAS  Google Scholar 

  28. 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.

    Article  PubMed  Google Scholar 

  29. Altman, D. G., & Bland, J. M. (2011). Brackets (parentheses) in formulas. BMJ, 343–344. Retrieved from http://www.bmj.com/content/343/bmj.d570.long.

  30. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale, NJ: Lawrence Erlbaum Associates.

    Google Scholar 

  31. Yardley, J. K., & Rice, R. W. (1991). The relationship between mood and subjective well-being. Social Indicators Research, 24(1), 101–111. doi:10.1007/BF00292653.

    Article  Google Scholar 

  32. 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.

  33. Romberg, A., Virtanen, A., Ruutiainen, J., Aunola, S., Karppi, S. L., Vaara, M., et al. (2004). Effects of a 6-month exercise program on patients with multiple sclerosis: A randomized study. Neurology, 63(11), 2034–2038. doi:10.1212/01.WNL.0000145761.38400.65.

    Article  CAS  PubMed  Google Scholar 

  34. Romberg, A., Virtanen, A., & Ruutiainen, J. (2005). Long-term exercise improves functional impairment but not quality of life in multiple sclerosis. Journal of Neurology, 252(7), 839–845. doi:10.1007/s00415-005-0759-2.

    Article  PubMed  Google Scholar 

  35. 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.

    Google Scholar 

  36. 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.

    CAS  PubMed  Google Scholar 

  37. 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.

    Article  PubMed  Google Scholar 

  38. 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  Google Scholar 

  39. 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.

    Article  Google Scholar 

  40. Oken, B. S., Kishiyama, S., Zajdel, D., Bourdette, D., Carlsen, J., Haas, M., et al. (2004). Randomized controlled trial of yoga and exercise in multiple sclerosis. Neurology, 62(11), 2058–2064. doi:10.1212/01.WNL.0000129534.88602.5C.

    Article  CAS  PubMed  Google Scholar 

  41. 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.

    Google Scholar 

  42. 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.

    Google Scholar 

  43. Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis an expanded disability status scale (EDSS). Neurology, 33(11), 1444–1452.

    Article  CAS  PubMed  Google Scholar 

  44. 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.

    Article  PubMed Central  PubMed  Google Scholar 

  45. 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.

    Google Scholar 

  46. Wyrwich, K. W., Norquist, J. M., Lenderking, W. R., & Acaster, S. (2013). Methods for interpreting change over time in patient-reported outcome measures. Quality of Life Research, 22(3), 475–483. doi:10.1007/s11136-012-0175-x.

    Article  CAS  PubMed  Google Scholar 

  47. Revicki, D., Hays, R. D., Cella, D., & Sloan, J. (2008). Recommended methods for determining responsiveness and minimally important differences for patient-reported outcomes. Journal of Clinical Epidemiology, 61(2), 102–109. doi:10.1016/j.jclinepi.2007.03.012.

    Article  PubMed  Google Scholar 

  48. Messick, S. (1995). Validity of psychological assessment: Validation of inferences from persons’ responses and performances as scientific inquiry into score meaning. American Psychologist, 50(9), 741. doi:10.1037/0003-066X.50.9.741.

    Article  Google Scholar 

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Acknowledgments

This research was funded by a Grant from the National Institute of Neurological Disorders and Stroke (NS054050). Y.L. was recipient of a Du Pré Award from the Multiple Sclerosis International Federation. R.M. and E.M. acquired funding and initiated the overall study. Y.L., E.H. and R.M. undertook statistical analysis. Y.L. wrote the draft manuscript. E.H., R.M. and E.M. revised the draft manuscript. All authors gave approval of the final submitted version. The authors wish to thank all participants in this research and all staff and students involved in data collection and analysis.

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The authors report no conflict of interest.

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Learmonth, Y.C., Hubbard, E.A., McAuley, E. et al. Psychometric properties of quality of life and health-related quality of life assessments in people with multiple sclerosis. Qual Life Res 23, 2015–2023 (2014). https://doi.org/10.1007/s11136-014-0639-2

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