Brain, Vol. 124, No. 5, 962-973,
May 2001
© 2001 Oxford University Press
The Multiple Sclerosis Impact Scale (MSIS-29)
A new patient-based outcome measure
1 Neurological Outcome Measures Unit, Institute of Neurology, London, 2 Health Services Research Unit, London School of Hygiene and Tropical Medicine and 3 Department of Public Health and Primary Care, University of Oxford, UK
Correspondence to:
Dr Jeremy Hobart, Neurological Outcome Measures Unit, Institute of Neurology, Queen Square, London WC1N 3BG, UK E-mail: J.Hobart@ion.ucl.ac.uk
Changes in health policy have underlined the importance of evidence-based clinical practice and rigorous evaluation of patient-based outcomes. As patient-based outcome measurement is particularly important in treatment trials of multiple sclerosis, a number of disease-specific instruments have been developed recently. One limitation of these instruments is that none was developed using the standard psychometric approach of reducing a large item pool generated from people with multiple sclerosis. Consequently, an outcome measure for clinical trials of multiple sclerosis that is disease specific and combines patient perspective with rigorous psychometric methods will complement existing instruments. The aim of this study was to develop such a measure. Standard psychometric methods were used. A pool of 129 questionnaire items was generated from interviews with 30 people with multiple sclerosis, expert opinion and literature review. The questionnaire was administered by postal survey to 1530 people selected randomly from the Multiple Sclerosis Society membership database. Redundant items and those with limited measurement properties were removed. The remaining items (n = 41) were grouped into scales using factor analysis, and then refined to form the Multiple Sclerosis Impact Scale (MSIS-29), an instrument measuring the physical (20 items) and psychological (nine items) impact of multiple sclerosis. Five psychometric properties of the MSIS-29 (data quality, scaling assumptions, acceptability, reliability and validity) were examined in a separate postal survey of 1250 Multiple Sclerosis Society members. A preliminary responsiveness study of the MSIS-29 was undertaken in 55 people admitted for rehabilitation and intravenous steroid treatment of relapses. The MSIS-29 satisfied all psychometric criteria. Data quality was excellent, missing data were low (maximum 3.9%), item test–re-test reliability was high (r = 0.65–0.90) and scale scores could be generated for >98% of respondents. Item descriptive statistics, item convergent and discriminant validity, and factor analysis indicated that it was legitimate to generate scores for MSIS-29 scales by summing items. MSIS-29 scales showed good variability, small floor and ceiling effects, high internal consistency (Cronbach's alpha 
0.91) and high test–re-test reliability (intraclass correlation 0.87). Correlations with other measures and the analysis of group differences provided evidence that the MSIS-29 measures the physical and psychological impact of multiple sclerosis. Effect sizes (physical scale = 0.82, psychological scale = 0.66) demonstrated preliminary evidence of good responsiveness. These results indicate the MSIS-29 is a clinically useful and scientifically sound patient-based outcome measure of the impact of multiple sclerosis suitable for clinical trials and epidemiological studies.
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  P. Martinez-Martin, C. Rodriguez-Blazquez, K. Abe, K. B. Bhattacharyya, B. R. Bloem, F. J. Carod-Artal, R. Prakash, R.A.J. Esselink, C. Falup-Pecurariu, M. Gallardo, et al. International study on the psychometric attributes of the Non-Motor Symptoms Scale in Parkinson disease Neurology, November 10, 2009; 73(19): 1584 - 1591. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 C. Hughes, S. Smyth, and A. Lowe-Strong Reflexology for the treatment of pain in people with multiple sclerosis: a double-blind randomised sham-controlled clinical trial Multiple Sclerosis, November 1, 2009; 15(11): 1329 - 1338. [Abstract] [PDF]
|
|
|
|
|
|
J. Wesson, J. Cooper, L. Jehle, S. Lockhart, K. Draney, and J. Barber The functional index for living with multiple sclerosis: development and validation of a new quality of life questionnaire Multiple Sclerosis, October 1, 2009; 15(10): 1239 - 1249. [Abstract] [PDF]
|
|
|
|
 |
|
 A Giordano, E Pucci, P Naldi, L Mendozzi, C Milanese, F Tronci, M Leone, N Mascoli, L La Mantia, G Giuliani, et al. Responsiveness of patient reported outcome measures in multiple sclerosis relapses: the REMS study J. Neurol. Neurosurg. Psychiatry, September 1, 2009; 80(9): 1023 - 1028. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 F. Schyns, L. Paul, K. Finlay, C. Ferguson, and E. Noble Vibration therapy in multiple sclerosis: a pilot study exploring its effects on tone, muscle force, sensation and functional performance Clinical Rehabilitation, September 1, 2009; 23(9): 771 - 781. [Abstract] [PDF]
|
|
|
|
|
|
L. Doward, S. McKenna, D. Meads, J Twiss, and B. Eckert The development of patient-reported outcome indices for multiple sclerosis (PRIMUS) Multiple Sclerosis, September 1, 2009; 15(9): 1092 - 1102. [Abstract] [PDF]
|
|
|
|
|
|
S. Broadley, D Vanags, B Williams, B Johnson, D Feeney, L Griffiths, S Shakib, G Brown, A Coulthard, P Mullins, et al. Results of a phase IIa clinical trial of an anti-inflammatory molecule, chaperonin 10, in multiple sclerosis Multiple Sclerosis, March 1, 2009; 15(3): 329 - 336. [Abstract] [PDF]
|
|
|
|
|
|
O. Gray, G. McDonnell, and S. Hawkins Tried and tested: the psychometric properties of the multiple sclerosis impact scale (MSIS-29) in a population-based study Multiple Sclerosis, January 1, 2009; 15(1): 75 - 80. [Abstract] [PDF]
|
|
|
|
|
|
F Khan, J F Pallant, C Brand, and T J Kilpatrick Effectiveness of rehabilitation intervention in persons with multiple sclerosis: a randomised controlled trial J. Neurol. Neurosurg. Psychiatry, November 1, 2008; 79(11): 1230 - 1235. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. E. Cavanna, A. Schrag, D. Morley, M. Orth, M. M. Robertson, E. Joyce, H. D. Critchley, and C. Selai The Gilles de la Tourette Syndrome-Quality of Life Scale (GTS-QOL): Development and validation Neurology, October 28, 2008; 71(18): 1410 - 1416. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 M. Bishop, M. P. Frain, and M. K. Tschopp Self-Management, Perceived Control, and Subjective Quality of Life in Multiple Sclerosis: An Exploratory Study Rehabil Couns Bull, October 1, 2008; 52(1): 45 - 56. [Abstract] [PDF]
|
|
|
|
|
|
C. P Donnellan and J. Shanley Comparison of the effect of two types of acupuncture on quality of life in secondary progressive multiple sclerosis: a preliminary single-blind randomized controlled trial Clinical Rehabilitation, March 1, 2008; 22(3): 195 - 205. [Abstract] [PDF]
|
|
|
|
|
|
R. McCullagh, A. P Fitzgerald, R. P Murphy, and G. Cooke Long-term benefits of exercising on quality of life and fatigue in multiple sclerosis patients with mild disability: a pilot study Clinical Rehabilitation, March 1, 2008; 22(3): 206 - 214. [Abstract] [PDF]
|
|
|
|
|
|
L. Costelloe, K. O'Rourke, C. McGuigan, C. Walsh, N. Tubridy, and M. Hutchinson The longitudinal relationship between the patient-reported Multiple Sclerosis Impact Scale and the clinician-assessed Multiple Sclerosis Functional Composite Multiple Sclerosis, March 1, 2008; 14(2): 255 - 258. [Abstract] [PDF]
|
|
|
|
|
|
M. Simeoni, P. Auquier, O. Fernandez, P. Flachenecker, S. Stecchi, C. Constantinescu, E. Idiman, A. Boyko, A. Beiske, T. Vollmer, et al. Validation of the Multiple Sclerosis International Quality of Life questionnaire Multiple Sclerosis, March 1, 2008; 14(2): 219 - 230. [Abstract] [PDF]
|
|
|
|
|
|
L. Contelloe and M. Hutchinson Is a 20% change in MSFC components clinically meaningful? Multiple Sclerosis, September 1, 2007; 13(8): 1076 - 1076. [PDF]
|
|
|
|
|
|
L. Costelloe, K. O'Rourke, H. Kearney, C. McGuigan, L. Gribbin, M. Duggan, L. Daly, N. Tubridy, and M. Hutchinson The patient knows best: significant change in the physical component of the Multiple Sclerosis Impact Scale (MSIS-29 physical) J. Neurol. Neurosurg. Psychiatry, August 1, 2007; 78(8): 841 - 844. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. Forbes, A. While, and L. Mathes Informal carer activities, carer burden and health status in multiple sclerosis Clinical Rehabilitation, June 1, 2007; 21(6): 563 - 575. [Abstract] [PDF]
|
|
|
|
|
|
B. Giesser, J. Beres-Jones, A. Budovitch, E. Herlihy, and S. Harkema Locomotor training using body weight support on a treadmill improves mobility in persons with multiple sclerosis: a pilot study Multiple Sclerosis, March 1, 2007; 13(2): 224 - 231. [Abstract] [PDF]
|
|
|
|
|
|
T E Sherman, L J Rapport, R A Hanks, K A Ryan, P A Keenan, O Khan, and R P Lisak Predictors of well-being among significant others of persons with multiple sclerosis Multiple Sclerosis, March 1, 2007; 13(2): 238 - 249. [Abstract] [PDF]
|
|
|
|
|
|
P Ayatollahi, S Nafissi, M R Eshraghian, H Kaviani, and A Tarazi Impact of depression and disability on quality of life in Iranian patients with multiple sclerosis Multiple Sclerosis, March 1, 2007; 13(2): 275 - 277. [Abstract] [PDF]
|
|
|
|
 |
|
 V. de Groot, H. Beckerman, B. M. J. Uitdehaag, H. C. W. de Vet, G. J. Lankhorst, C. H. Polman, and L. M. Bouter The usefulness of evaluative outcome measures in patients with multiple sclerosis Brain, October 1, 2006; 129(10): 2648 - 2659. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
J J Kragt, F A. van der Linden, J M Nielsen, B M. Uitdehaag, and C H Polman Clinical impact of 20% worsening on Timed 25-foot Walk and 9-hole Peg Test in multiple sclerosis Multiple Sclerosis, September 1, 2006; 12(5): 594 - 598. [Abstract] [PDF]
|
|
|
|
|
|
A. Schrag, C. Selai, N. Quinn, A. Lees, I. Litvan, A. Lang, Y. Poon, J. Bower, D. Burn, and J. Hobart Measuring quality of life in PSP: The PSP-QoL. Neurology, July 11, 2006; 67(1): 39 - 44. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. Forbes, A. While, L. Mathes, and P. Griffiths Health problems and health-related quality of life in people with multiple sclerosis Clinical Rehabilitation, January 1, 2006; 20(1): 67 - 78. [Abstract] [PDF]
|
|
|
|
|
|
J. C. Hobart, A. Riazi, A. J. Thompson, I. M. Styles, W. Ingram, P. J. Vickery, M. Warner, P. J. Fox, and J. P. Zajicek Getting the measure of spasticity in multiple sclerosis: the Multiple Sclerosis Spasticity Scale (MSSS-88) Brain, January 1, 2006; 129(1): 224 - 234. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
J C Hobart, A Riazi, D L Lamping, R Fitzpatrick, and A J Thompson How responsive is the Multiple Sclerosis Impact Scale (MSIS-29)? A comparison with some other self report scales J. Neurol. Neurosurg. Psychiatry, November 1, 2005; 76(11): 1539 - 1543. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 C. Heffernan and C. Jenkinson Review Paper: Measuring outcomes for neurological disorders: a review of disease-specific health status instruments for three degenerative neurological conditions Chronic Illness, June 1, 2005; 1(2): 131 - 142. [Abstract] [PDF]
|
|
|
|
|
|
R. H.S.R. Roxburgh, S. R. Seaman, T. Masterman, A. E. Hensiek, S. J. Sawcer, S. Vukusic, I. Achiti, C. Confavreux, M. Coustans, E. le Page, et al. Multiple Sclerosis Severity Score: Using disability and disease duration to rate disease severity Neurology, April 12, 2005; 64(7): 1144 - 1151. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
J D Fisk, M G Brown, I S Sketris, L M Metz, T J Murray, and K J Stadnyk A comparison of health utility measures for the evaluation of multiple sclerosis treatments J. Neurol. Neurosurg. Psychiatry, January 1, 2005; 76(1): 58 - 63. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
D A Gruenewald, I J Higginson, B Vivat, P Edmonds, and R E Burman Quality of life measures for the palliative care of people severely affected by multiple sclerosis: a systematic review Multiple Sclerosis, December 1, 2004; 10(6): 690 - 725. [Abstract] [PDF]
|
|
|
|
|
|
S. J. Cano, T. T. Warner, J. M. Linacre, K. P. Bhatia, A. J. Thompson, R. Fitzpatrick, and J. C. Hobart Capturing the true burden of dystonia on patients: The Cervical Dystonia Impact Profile (CDIP-58) Neurology, November 9, 2004; 63(9): 1629 - 1633. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
E L. Hoogervorst, J N. Zwemmer, B Jelles, C H Polman, and B M. Uitdehaag Multiple Sclerosis Impact Scale (MSIS-29): relation to established measures of impairment and disability Multiple Sclerosis, October 1, 2004; 10(5): 569 - 574. [Abstract] [PDF]
|
|
|
|
 |
|
 O.R. Pearson, M.E. Busse, R.W.M. van Deursen, and C.M. Wiles Quantification of walking mobility in neurological disorders QJM, August 1, 2004; 97(8): 463 - 475. [Full Text] [PDF]
|
|
|
|
|
|
C M Brady, R DasGupta, C Dalton, O J Wiseman, K J Berkley, and C J Fowler An open-label pilot study of cannabis-based extracts for bladder dysfunction in advanced multiple sclerosis Multiple Sclerosis, August 1, 2004; 10(4): 425 - 433. [Abstract] [PDF]
|
|
|
|
|
|
C. McGuigan and M. Hutchinson Confirming the validity and responsiveness of the Multiple Sclerosis Walking Scale-12 (MSWS-12) Neurology, June 8, 2004; 62(11): 2103 - 2105. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
J Greenhalgh, H Ford, A F Long, and K Hurst The MS Symptom and Impact Diary (MSSID): psychometric evaluation of a new instrument to measure the day to day impact of multiple sclerosis J. Neurol. Neurosurg. Psychiatry, April 1, 2004; 75(4): 577 - 582. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
C McGuigan and M Hutchinson The multiple sclerosis impact scale (MSIS-29) is a reliable and sensitive measure J. Neurol. Neurosurg. Psychiatry, February 1, 2004; 75(2): 266 - 269. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
J Hobart, N Kalkers, F Barkhof, B Uitdehaag, C Polman, and A Thompson Outcome measures for multiple sclerosis clinical trials: relative measurement precision of the Expanded Disability Status Scale and Multiple Sclerosis Functional C omposite Multiple Sclerosis, February 1, 2004; 10(1): 41 - 46. [Abstract] [PDF]
|
|
|
|
|
|
A Riazi, A J Thompson, and J C Hobart Self-efficacy predicts self-reported health status in multiple sclerosis Multiple Sclerosis, February 1, 2004; 10(1): 61 - 66. [Abstract] [PDF]
|
|
|
|
 |
|
 S. Thorne, A. Con, L. McGuinness, G. McPherson, and S. R. Harris Health Care Communication Issues in Multiple Sclerosis: An Interpretive Description Qual Health Res, January 1, 2004; 14(1): 5 - 22. [Abstract] [PDF]
|
|
|
|
|
|
S. M Gold, H. Schulz, A. Monch, K.-H. Schulz, and C. Heesen Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures Multiple Sclerosis, August 1, 2003; 9(4): 404 - 410. [Abstract] [PDF]
|
|
|
|
|
|
A Riazi, J C Hobart, D L Lamping, R Fitzpatrick, and A J Thompson Evidence-based measurement in multiple sclerosis: the psychometric properties of the physical and psychological dimensions of three quality of life rating scales Multiple Sclerosis, August 1, 2003; 9(4): 411 - 419. [Abstract] [PDF]
|
|
|
|
|
|
A Riazi, J C Hobart, D L Lamping, R Fitzpatrick, J A Freeman, C Jenkinson, V Peto, and A J Thompson Using the SF-36 measure to compare the health impact of multiple sclerosis and Parkinson's disease with normal population health profiles J. Neurol. Neurosurg. Psychiatry, June 1, 2003; 74(6): 710 - 714. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
M W Nortvedt and T Riise The use of quality of life measures in multiple sclerosis research Multiple Sclerosis, February 1, 2003; 9(1): 63 - 72. [Abstract] [PDF]
|
|
|
|
|
|
J. C. Hobart, A. Riazi, D. L. Lamping, R. Fitzpatrick, and A. J. Thompson Measuring the impact of MS on walking ability: The 12-Item MS Walking Scale (MSWS-12) Neurology, January 14, 2003; 60(1): 31 - 36. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A Riazi, J C Hobart, D L Lamping, R Fitzpatrick, and A J Thompson Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples J. Neurol. Neurosurg. Psychiatry, December 1, 2002; 73(6): 701 - 704. [Abstract] [Full Text] [PDF]
|
|
|
|
|
|
A. J Thompson Developing clinical outcome measures in multiple sclerosis: an evolving process Multiple Sclerosis, October 1, 2002; 8(5): 357 - 358. [PDF]
|
|
|
|
|
|
J Hobart, J Freeman, D Lamping, R Fitzpatrick, and A Thompson The SF-36 in multiple sclerosis: why basic assumptions must be tested J. Neurol. Neurosurg. Psychiatry, September 1, 2001; 71(3): 363 - 370. [Abstract] [Full Text] [PDF]
|
|