Disability and Health Journal
Volume 1, Issue 1 , Pages 58-65 , January 2008

Pilot study exploring quality of life and barriers to leisure-time physical activity in persons with moderate to severe multiple sclerosis

  • Elizabeth A. Vanner, M.S.

      Affiliations

    • Rehabilitation Sciences Division, Stony Brook University, Stony Brook, NY 11794, USA
    • Corresponding Author InformationCorresponding author: Rehabilitation Sciences Division, SHTM, HSC, L2, Stony Brook University, Stony Brook, NY 11794-8201. Fax: 631-444-6305.
    • ,
  • Pamela Block, Ph.D.

      Affiliations

    • Occupational Therapy Department, Stony Brook University, Stony Brook, NY 11794, USA
    • ,
  • Christopher C. Christodoulou, Ph.D.

      Affiliations

    • Department of Neurology, Stony Brook University Hospital, Stony Brook, NY 11794, USA
    • ,
  • Beverly P. Horowitz, Ph.D.

      Affiliations

    • Occupational Therapy Department, Stony Brook University, Stony Brook, NY 11794, USA
    • ,
  • Lauren B. Krupp, M.D.

      Affiliations

    • Department of Neurology, Stony Brook University Hospital, Stony Brook, NY 11794, USA

References 

  1. Vanage SM, Gilbertson KK, Mathiowetz V. Effects of an energy conservation course on fatigue impact for persons with progressive multiple sclerosis. Am J Occup Ther. 2003;57(3):315–323
  2. Svendsen KB, Jensen TS, Hansen HJ, Bach FW. Sensory function and quality of life in patients with multiple sclerosis and pain. Pain. 2005;114(3):473–481
  3. Janculjak D, Mubrin Z, Brinar V, Spilich G. Changes of attention and memory in a group of patients with multiple sclerosis. Clin Neurol Neurosurg. 2002;104(3):221–227
  4. Lobentanz IS, Asenbaum S, Vass K, et al. Factors influencing quality of life in multiple sclerosis patients: disability, depressive mood, fatigue and sleep quality. Acta Neurol Scand. 2004;110(1):6–13
  5. Schreurs KM, de Ridder DT, Bensing JM. Fatigue in multiple sclerosis: reciprocal relationships with physical disabilities and depression. J Psychosom Res. 2002;53(3):775–781
  6. Goffman E. Stigma. Englewood Cliffs, NJ: Prentice-Hall; 1963;
  7. Becker H, Stuifbergen A. What makes it so hard? Barriers to health promotion experienced by people with multiple sclerosis and polio. Fam Commun Health. 2004;27(1):75–85
  8. Rimmer JH, Braddock D. Health promotion for people with physical, cognitive, and sensory disabilities: an emerging national priority. Am J Health Promot. 2002;16(4):220–224ii
  9. Kinne S, Patrick DL, Maher EJ. Correlates of exercise maintenance among people with mobility impairments. Disabil Rehabil. 1999;21(1):15–22
  10. Albrecht GL, Seelman KD, Bury M. Handbook of Disability Studies. Thousand Oaks, CA: Sage Publications; 2001;
  11. Devlieger P, Rusch F, Pfeiffer D. Rethinking disability as same and different: towards a cultural model of disability. In:  Devlieger P,  Rusch F,  Pfeiffer D editor. Rethinking Disability: The Emergence of New Definitions, Concepts and Communities. Antwerp: Garant; 2003;p. 9–16
  12. Shuttleworth RP, Kasnitz D. Stigma, community, ethnography: Joan Ablon's contribution to the anthropology of impairment-disability. Med Anthropol Q. 2004;18(2):139–161
  13. Corker M, Shakespeare T. Disability/Postmodernity: Embodying Disability Theory. New York: Continuum; 2002;
  14. Hanson CS, Nabavi D, Yuen HK. The effect of sports on level of community integration as reported by persons with spinal cord injury. Am J Occup Ther. 2001;55(3):332–338
  15. Romberg A, Virtanen A, Ruutiainen J. Long-term exercise improves functional impairment but not quality of life in multiple sclerosis. J Neurol. 2005;252(7):839–845
  16. Colcombe S, Kramer AF. Fitness effects on the cognitive function of older adults: a meta-analytic study. Psychol Sci. 2003;14(2):125–130
  17. Schulz KH, Gold SM, Witte J, et al. Impact of aerobic training on immune-endocrine parameters, neurotrophic factors, quality of life and coordinative function in multiple sclerosis. J Neurol Sci. 2004;225(1-2):11–18
  18. McDonald WI, Compston A, Edan G, et al. Recommended diagnostic criteria for multiple sclerosis: guidelines from the International Panel on the Diagnosis of Multiple Sclerosis. Ann Neurol. 2001;50:121–127
  19. Kieseier B, Hemmer B, Hartung H. Multiple sclerosis: novel insights and new therapeutic strategies. Curr Opin Neurol Neurosurg. 2005;18(3):211–220
  20. Sadovnick AD, Remick RA, Allen J, et al. Depression and multiple sclerosis. Neurology. 1996;46(3):628–632
  21. Lynch SG, Kroencke DC, Denney DR. The relationship between disability and depression in multiple sclerosis: the role of uncertainty, coping, and hope. Mult Scler. 2001;7(6):411–416
  22. Elliot TR, Frank RG, Brownlee-Duffeck M. Clinical inferences about depression and physical disability. Prof Psychol Res Pract. 1988;19(2):206–210
  23. Chwastiak LA, Gibbons LE, Ehde DM, et al. Fatigue and psychiatric illness in a large community sample of persons with multiple sclerosis. J Psychosom Res. 2005;59(5):291–298
  24. Crayton H, Heyman RA, Rossman HS. A multimodal approach to managing the symptoms of multiple sclerosis. Neurology. 2004;63(11 suppl. 5):S12–S18
  25. Mostert S, Kesselring J. Effects of a short-term exercise training program on aerobic fitness, fatigue, health perception and activity level of subjects with multiple sclerosis. Mult Scler. 2002;8(2):161–168
  26. DalMonte J, Finlayson M, Helfrich C. In their own words: coping processes among women aging with MS. In:  Finlayson M editors. Occupational Therapy Practice and Research With Persons With Multiple Sclerosis. New York: Haworth Press; 2003;
  27. Schwartz CE, Coulthard-Morris L, Zeng Q. Psychosocial correlates of fatigue in multiple sclerosis. Arch Phys Med Rehabil. 1996;77(2):165–170
  28. Rasova K, Havrdova E, Brandejsky P, Zálišová M, Foubikova B, Martinkova P. Comparison of the influence of different rehabilitation programmes on clinical, spirometric and spiroergometric parameters in patients with multiple sclerosis. Mult Scler. 2006;12(2):227–234
  29. Byrne A, Byrne DG. The effect of exercise on depression, anxiety and other mood states: a review. J Psychosom Res. 1993;37(6):565–574
  30. Teri L, Gibbons LE, McCurry SM, Logsdon RG, Buchner DM, Barlow WE, et al. Exercise plus behavioral management in patients with Alzheimer disease: a randomized controlled trial. JAMA. 2003;290(15):2015–2022
  31. White LJ, Dressendorfer RH. Exercise and multiple sclerosis. Sports Med. 2005;34(15):1077–1100
  32. Oken BS, Kishiyama S, Zajdel D, Bourdette D, Carlsen J, Haas M, et al. Randomized controlled trial of yoga and exercise in multiple sclerosis. Neurology. 2004;62(11):2058–2064
  33. Sutherland G, Andersen MB. Exercise and multiple sclerosis: physiological, psychological, and quality of life issues. J Sports Med Phys Fitness. 2001;41(4):421–432
  34. Walsh A, Walsh PA. Love, self-esteem, and multiple sclerosis. Soc Sci Med. 1989;29(7):793–798
  35. Di Fabio RP, Choi T, Soderberg J, Hansen CR. Health-related quality of life for patients with progressive multiple sclerosis: influence of rehabilitation. Phys Ther. 1997;77(12):1704–1716
  36. Noreau L, Shephard RJ. Spinal cord injury, exercise and quality of life. Sports Med. 1995;20(4):226–250
  37. Karpatkin HI. Multiple sclerosis and exercise. Int J MS Care. 2005;7(3):36–41
  38. Langdon DW, Thompson AJ. Multiple sclerosis: a preliminary study of selected variables affecting rehabilitation outcome. Mult Scler. 1999;5(2):94–100
  39. Di Fabio RP, Soderberg J, Choi T, Hansen CR, Schapiro RT. Extended outpatient rehabilitation: its influence on symptom frequency, fatigue, and functional status for persons with progressive multiple sclerosis. Arch Phys Med Rehabil. 1998;79(2):141–146
  40. Edwards J, Finlayson M, Impey MW, Nicolle C. Self-care, productivity and leisure limitations of people with multiple sclerosis in Manitoba. Can J Occup Ther (Rev Can Ergother). 1998;65:295–308
  41. LaRocca NG, Kalb R. Efficacy of rehabilitation in multiple sclerosis. J Neurol Rehabil. 1992;6:147–155
  42. Rimmer JH, Riley B, Wang E, Rauworth A, Jurkowski J. Physical activity participation among persons with disabilities: barriers and facilitators. Am J Prev Med. 2004;26(5):419–425
  43. Bombardier CH, Wadhwani R, LaRotonda C. Health promotion in people with multiple sclerosis. Phys Med Rehabil Clin N Am. 2005;16(2):557–570
  44. Baker NA, Tickle-Degnen L. The effectiveness of physical, psychological, and functional interventions in treating clients with multiple sclerosis: a meta-analysis. Am J Occup Ther. 2001;55(3):324–331
  45. Solari A, Filippini G, Gasco P, Colla L, Salmaggi A, La Mantia L, et al. Physical rehabilitation has a positive effect on disability in multiple sclerosis patients. Neurology. 1999;52(1):57–62
  46. Stuifbergen AK, Becker H, Blozis S, Timmerman G, Kullberg V. A randomized clinical trial of a wellness intervention for women with multiple sclerosis. Arch Phys Med Rehabil. 2003;84(4):467–476
  47. Rimmer JH, Riley B, Wang E, Rauworth A. Accessibility of health clubs for people with mobility disabilities and visual impairments. Am J Public Health. 2005;95:2022–2028
  48. Block P, Everhart Skeels SE, Keys CB, Rimmer JH. Shake-It-Up: health promotion and capacity building for people with spinal cord injuries and related neurological disabilities. Disabil Rehabil. 2005;27(4):185–190
  49. McCabew MP, De Judicibus M. The effects of economic disadvantage on psychological well-being and quality of life among people with multiple sclerosis. J Health Psychol. 2005;10(1):163–173
  50. Beatty PW, Hagglund KJ, Neri MT, Dhont KR, Clark MJ, Hilton SA. Access to health care services among people with chronic or disabling conditions: patterns and predictors. Arch Phys Med Rehabil. 2003;84(10):1417–1425
  51. Clingerman E, Stuifbergen A, Becker H. The influence of resources on perceived functional limitations among women with multiple sclerosis. J Neurosci Nurs. 2004;36(6):312–321
  52. Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS). Neurology. 1983;33(11):1444–1452
  53. Spreen O, Strauss E. Rey Auditory-Verbal Learning Test. A Compendium of Neuropsychological Tests. ed 2. Oxford: Oxford University Press; 1998;326-340
  54. Smith A. Symbol Digit Modalities Test (SDMT) 1973. http://portal.wpspublish.com/portal/page?_pageid=53,69289and_dad=portaland_schema=PORTAL. Accessed March 3, 2005.
  55. Rao SM. Cognitive dysfunction in multiple sclerosis. I. Frequency, patterns, and prediction. Neurology. 1991;41(5):685–691
  56. Spreen O, Strauss E. A Compendium of Neuropsychological Tests. New York: Oxford University Press; 1991;
  57. Rao SM. Cognitive Function Study Group of the National Multiple Sclerosis Society. A Manual for the Brief, Repeatable Battery of Neuropsychological Tests in Multiple Sclerosis. Milwaukee: Medical College of Wisconsin; 1990;
  58. Schwarzer R, Jerusalem M. Generalized Self-Efficacy Scale. In:  Weinman J,  Wright S,  Johnston M editor. Measures in Health Psychology: A User's Portfolio of Causal and Control Beliefs. Windson, UK: NFER-Nelson; 1995;p. 35–37
  59. Chang CH, Nyenhuis DL, Cella D, Luchetta T, Dineen K, Reder AT. Psychometric evaluation of the Chicago Multiscale Depression Inventory in multiple sclerosis patients. Mult Scler. 2003;9(2):160–170
  60. Marin RS, Biedrzycki RC, Firinciogullari S. Reliability and validity of the Apathy Evaluation Scale. Psychiatry Res. 1991;38(2):143–162
  61. Flachenecker P, Müller G, König H, Meissner H, Toyka KV, Rieckmann P. Fatigue in multiple sclerosis. Development and validation of the Würzburger Fatigue Inventory for MS. Nervenarzt. 2006;77(2):165–166168-170, 172-174
  62. Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD. The Fatigue Severity Scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Arch Neurol. 1989;46(10):1121–1123
  63. Armutlu K, Korkmaz N, Keser I, Sumbuloglu V, Akbiyik DI, Guney Z, et al. The validity and reliability of the Fatigue Severity Scale in Turkish multiple sclerosis patients. Int J Rehabil Res. 2007;30(1):81–85
  64. Drummond AE, Parker CJ, Gladman JR, Logan PA, Group TS. Development and validation of the Nottingham Leisure Questionnaire (NLQ). Clin Rehabil. 2001;15(6):647–656
  65. Tate DG, Chiodo A, Nelson V, Roller MA, Zemper E, Forchheimer M. Health promotion: effect of a holistic health promotion program on individuals with spinal cord injury. 2002. http://www.ncpad.org/programming/fact_sheet.php?sheet=116&section=915. Accessed August 29, 2007.
  66. Rimmer JH, Barth BR, Rubin SS. A new measure for assessing the physical activity behaviors of persons with disabilities and chronic health conditions. www.ncpad.org/surveys/padspaper.htm. Accessed June 18, 2003.
  67. Rimmer JH, Barth BR, Rubin SS. Physical Activity Disability Scale. www.ncpad.org/surveys/NewPads.asp. Accessed June 18, 2004.
  68. Rimmer JH, Rubin SS, Braddock D, Hedman G. Physical activity patterns of African-American women with physical disabilities. Med Sci Sports Exerc. 1999;31(4):613–618
  69. Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW. A health-related quality of life measure for multiple sclerosis. Qual Life Res. 1995;4(3):187–206
  70. Vickrey BG, Hays RD, Genovese BJ, Myers LW, Ellison GW. Comparison of a generic to disease-targeted health-related quality-of-life measures for multiple sclerosis. J Clin Epidemiol. 1997;50(5):557–569
  71. Ritvo PG, Fischer JS, Miller DM, Andrews H, Paty DW, LaRocca NG. MSQLI Multiple Sclerosis Quality of Life Inventory: A User's Manual. New York: National Multiple Sclerosis Society; 1997;
  72. Coulthard-Morris L. Clinical and rehabilitation outcome measures. In:  Burks JS,  Johnson KP editor. Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation. New York: Demos Medical Publishing; 2000;p. 221–290
  73. SPSS 14.0 for Windows. Version 14. SPSS, Inc.; 2005.
  74. Claesson IM, Ytterberg C, Johansson S, Almkvist O, von Koch L. Rapid cognitive screening in multiple sclerosis accomplished by the Free Recall and Recognition Test. Mult Scler. 2007;13(2):272–274
  75. Tellez N, Rio J, Tintore M, Nos C, Galan I, Montalban X. Does the Modified Fatigue Impact Scale offer a more comprehensive assessment of fatigue in MS?. Mult Scler. 2005;11(2):198–202
  76. Idiman E, Uzunel F, Ozakbas S, et al. Cross-cultural adaptation and validation of Multiple Sclerosis Quality of Life Questionnaire (MSQOL-54) in a Turkish multiple sclerosis sample. J Neurol Sci. 2006;240(1):77–80
  77. Munro BH. Statistical Methods for Health Care Research. 5 ed.. Philadelphia: Lippincott, Williams and Wilkins; 2005;
  78. StatSoft. Canonical analysis. http://www.statsoft.com/textbook/stcanan.html. Accessed November 16, 2007.
  79. Krupp LB, Elkins LE. Fatigue and declines in cognitive functioning in multiple sclerosis. Neurology. 2000;55(7):934–949
  80. Hart S, Fonareva I, Merluzzi N, Mohr DC. Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Qual Life Res. 2005;14(3):695–703
  81. Plescia M, Joyner DR, Scheid TL. A regional health care system partnership with local communities to impact chronic disease. Prevent Chron Dis. 2004;1(4):A16

 Poster presentation of the initial results was displayed at the American Occupational Therapy Association annual meeting, Long Beach, CA, May 12–15, 2005.

PII: S1936-6574(07)00003-9

doi: 10.1016/j.dhjo.2007.11.001

Disability and Health Journal
Volume 1, Issue 1 , Pages 58-65 , January 2008

Article Tools