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Neurology Research International
Volume 2013, Article ID 580596, 12 pages
http://dx.doi.org/10.1155/2013/580596
Research Article

Methodology of an International Study of People with Multiple Sclerosis Recruited through Web 2.0 Platforms: Demographics, Lifestyle, and Disease Characteristics

1Emergency Practice Innovation Centre, St Vincent’s Hospital, Melbourne, VIC 3065, Australia
2Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC 3004, Australia
3Department of Medicine, The University of Melbourne (St Vincent’s Hospital), Melbourne, VIC 3065, Australia
4Faculty of Medicine, The University of Notre Dame Australia, Fremantle, WA 6959, Australia

Received 20 December 2012; Revised 27 February 2013; Accepted 20 March 2013

Academic Editor: B. R. Ott

Copyright © 2013 Emily J. Hadgkiss et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Linked References

  1. R. A. Marrie, “Environmental risk factors in multiple sclerosis aetiology,” The Lancet Neurology, vol. 3, no. 12, pp. 709–718, 2004. View at Publisher · View at Google Scholar · View at Scopus
  2. P. Flachenecker and K. Stuke, “National MS registries,” Journal of Neurology, vol. 255, no. 6, pp. 102–108, 2008. View at Publisher · View at Google Scholar · View at Scopus
  3. M. B. D'Hooghe, G. Nagels, V. Bissay, and J. de Keyser, “Modifiable factors influencing relapses and disability in multiple sclerosis,” Multiple Sclerosis, vol. 16, no. 7, pp. 773–785, 2010. View at Publisher · View at Google Scholar · View at Scopus
  4. R. A. Marrie, “Demographic, genetic, and environmental factors that modify disease course,” Neurologic Clinics, vol. 29, no. 2, pp. 323–341, 2011. View at Publisher · View at Google Scholar · View at Scopus
  5. G. Jelinek, Taking Control of Multiple Sclerosis: Natural and Medical Therapies to Prevent Its Progression, Fleetbooks, Lancaster, UK, 2005.
  6. E. J. Hadgkiss, G. A. Jelinek, T. J. Weiland et al., “Health-related quality of life outcomes at 1 and 5 years after a residential retreat promoting lifestyle modification for people with multiple sclerosis,” Neurological Sciences, vol. 34, no. 2, pp. 187–195, 2013. View at Google Scholar
  7. G. Jelinek, Overcoming Multiple Sclerosis: An Evidence-Based Guide to Recovery, Allen and Unwin, Sydney, Australia, 2010.
  8. M. B. D. 'Hooghe, P. Haentjens, G. Nagels, and J. de Keyser, “Alcohol, coffee, fish, smoking and disease progression in multiple sclerosis,” The European Journal of Neurology, vol. 19, no. 4, pp. 616–624, 2012. View at Google Scholar
  9. B. M. Kuehn, “Patients go online seeking support, practical advice on health conditions,” Journal of the American Medical Association, vol. 305, no. 16, pp. 1644–1645, 2011. View at Publisher · View at Google Scholar · View at Scopus
  10. B. K. Lee, “Epidemiologic research and Web 2.0-the user-driven Web,” Epidemiology, vol. 21, no. 6, pp. 760–763, 2010. View at Publisher · View at Google Scholar · View at Scopus
  11. C. Stromgren, “Community outreach through web resources: multiple sclerosis,” Medical Reference Services Quarterly, vol. 21, no. 1, pp. 61–70, 2002. View at Publisher · View at Google Scholar · View at Scopus
  12. M. J. Hohol, E. J. Orav, and H. L. Weiner, “Disease steps in multiple sclerosis: a simple approach to evaluate disease progression,” Neurology, vol. 45, no. 2, pp. 251–255, 1995. View at Google Scholar · View at Scopus
  13. O. Sangha, G. Stucki, M. H. Liang, A. H. Fossel, and J. N. Katz, “The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research,” Arthritis Care and Research, vol. 49, no. 2, pp. 156–163, 2003. View at Google Scholar · View at Scopus
  14. B. G. Vickrey, R. D. Hays, R. Harooni, L. W. Myers, and G. W. Ellison, “A health-related quality of life measure for multiple sclerosis,” Quality of Life Research, vol. 4, no. 3, pp. 187–206, 1995. View at Publisher · View at Google Scholar · View at Scopus
  15. S. McKellar, P. Horsley, R. Chambers et al., “Development of the diet habits questionnaire for use in cardiac rehabilitation,” Australian Journal of Primary Health, vol. 14, no. 3, pp. 43–47, 2008. View at Google Scholar · View at Scopus
  16. C. L. Craig, A. L. Marshall, M. Sjöström et al., “International physical activity questionnaire: 12-country reliability and validity,” Medicine and Science in Sports and Exercise, vol. 35, no. 8, pp. 1381–1395, 2003. View at Publisher · View at Google Scholar · View at Scopus
  17. R. L. Blake and D. A. McKay, “A single-item measure of social supports as a predictor of morbidity,” Journal of Family Practice, vol. 22, no. 1, pp. 82–84, 1986. View at Google Scholar · View at Scopus
  18. L. B. Krupp, N. G. LaRocca, J. Muir-Nash, and A. D. Steinberg, “The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus,” Archives of Neurology, vol. 46, no. 10, pp. 1121–1123, 1989. View at Google Scholar · View at Scopus
  19. K. Kroenke, R. L. Spitzer, and J. B. W. Williams, “The patient health questionnaire-2: validity of a two-item depression screener,” Medical Care, vol. 41, no. 11, pp. 1284–1292, 2003. View at Publisher · View at Google Scholar · View at Scopus
  20. Australian Bureau of Statistics, “Australian standard classification of cultural and ethnic groups,” 2012, http://www.abs.gov.au/AUSSTATS/abs@.nsf/DetailsPage/1249. 02011?OpenDocument.
  21. M. J. Hohol, E. J. Orav, and H. L. Weiner, “Disease steps in multiple sclerosis: a longitudinal study comparing disease steps and EDSS to evaluate disease progression,” Multiple Sclerosis, vol. 5, no. 5, pp. 349–354, 1999. View at Google Scholar · View at Scopus
  22. R. A. Marrie, G. Cutter, T. Tyry, O. Hadjimichael, D. Campagnolo, and T. Vollmer, “Changes in the ascertainment of multiple sclerosis,” Neurology, vol. 65, no. 7, pp. 1066–1070, 2005. View at Publisher · View at Google Scholar · View at Scopus
  23. R. A. Marrie, G. Cutter, T. Tyry, T. Vollmer, and D. Campagnolo, “Does multiple sclerosis-associated disability differ between races?” Neurology, vol. 66, no. 8, pp. 1235–1240, 2006. View at Publisher · View at Google Scholar · View at Scopus
  24. O. Hadjimichael, T. Vollmer, and M. K. Oleen-Burkey, “Fatigue characteristics in multiple sclerosis: the North American Research Committee on Multiple Sclerosis (NARCOMS) survey,” Health and Quality of Life Outcomes, vol. 6, article 100, 2008. View at Publisher · View at Google Scholar · View at Scopus
  25. L. Holper, M. Coenen, A. Weise, G. Stucki, A. Cieza, and J. Kesselring, “Characterization of functioning in multiple sclerosis using the ICF,” Journal of Neurology, vol. 257, no. 1, pp. 103–113, 2010. View at Publisher · View at Google Scholar · View at Scopus
  26. A. Solari, G. Filippini, L. Mendozzi et al., “Validation of Italian multiple sclerosis quality of life 54 questionnaire,” Journal of Neurology Neurosurgery and Psychiatry, vol. 67, no. 2, pp. 158–162, 1999. View at Google Scholar · View at Scopus
  27. T. Yamamoto, K. Ogata, M. Katagishi et al., “Validation of the Japanese-translated version multiple sclerosis quality of life-54 instrument,” Clinical Neurology, vol. 44, no. 7, pp. 417–421, 2004. View at Google Scholar · View at Scopus
  28. C. Acquardo, L. Lafortune, and I. Mear, “Quality of life in multiple sclerosis: translation in French Canadian of the MSQoL-54,” Health and Quality of Life Outcomes, vol. 1, article 70, 2003. View at Publisher · View at Google Scholar · View at Scopus
  29. M. P. Amato, G. Ponziani, F. Rossi, C. L. Liedl, C. Stefanile, and L. Rossi, “Quality of life in multiple sclerosis: the impact of depression, fatigue and disability,” Multiple Sclerosis, vol. 7, no. 5, pp. 340–344, 2001. View at Publisher · View at Google Scholar · View at Scopus
  30. J. L. Wang, M. A. Reimer, L. M. Metz, and S. B. Patten, “Major depression and quality of life in individuals with multiple sclerosis,” International Journal of Psychiatry in Medicine, vol. 30, no. 4, pp. 309–317, 2000. View at Publisher · View at Google Scholar · View at Scopus
  31. D. K. Tepavcevic, J. Kostic, I. D. Basuroski, N. Stojsavljevic, T. Pekmezovic, and J. Drulovic, “The impact of sexual dysfunction on the quality of life measured by MSQoL-54 in patients with multiple sclerosis,” Multiple Sclerosis, vol. 14, no. 8, pp. 1131–1136, 2008. View at Publisher · View at Google Scholar · View at Scopus
  32. N. Stroud, C. Minahan, and S. Sabapathy, “The perceived benefits and barriers to exercise participation in persons with multiple sclerosis,” Disability and Rehabilitation, vol. 31, no. 26, pp. 2216–2222, 2009. View at Publisher · View at Google Scholar · View at Scopus
  33. M. Weikert, R. W. Motl, Y. Suh, E. McAuley, and D. Wynn, “Accelerometry in persons with multiple sclerosis: measurement of physical activity or walking mobility?” Journal of the Neurological Sciences, vol. 290, no. 1-2, pp. 6–11, 2010. View at Publisher · View at Google Scholar · View at Scopus
  34. N. Reavley, J. F. Pallant, and A. Sali, “Evaluation of the effects of a psychosocial intervention on mood, coping, and quality of life in cancer patients,” Integrative Cancer Therapies, vol. 8, no. 1, pp. 47–55, 2009. View at Publisher · View at Google Scholar · View at Scopus
  35. C. Koopman, B. Nouriani, V. Erickson et al., “Sleep disturbances in women with metastatic breast cancer,” Breast Journal, vol. 8, no. 6, pp. 362–370, 2002. View at Publisher · View at Google Scholar · View at Scopus
  36. T. Smedal, A. G. Beiske, S. B. Glad et al., “Fatigue in multiple sclerosis: associations with health-related quality of life and physical performance,” The European Journal of Neurology, vol. 18, no. 1, pp. 114–120, 2011. View at Publisher · View at Google Scholar · View at Scopus
  37. A. Lerdal, E. G. Celius, and T. Moum, “Fatigue and its association with sociodemographic variables among multiple sclerosis patients,” Multiple Sclerosis, vol. 9, no. 5, pp. 509–514, 2003. View at Publisher · View at Google Scholar · View at Scopus
  38. R. A. Marrie, G. Cutter, T. Tyry, O. Hadjimichael, D. Campagnolo, and T. Vollmer, “Validation of the NARCOMS registry: fatique assessment,” Multiple Sclerosis, vol. 11, no. 5, pp. 583–584, 2005. View at Publisher · View at Google Scholar · View at Scopus
  39. K. Sjonnesen, S. Berzins, K. M. Fiest et al., “Evaluation of the 9-item Patient Health Questionnaire (PHQ-9) as an assessment instrument for symptoms of depression in patients with multiple sclerosis,” Postgraduate Medicine, vol. 124, no. 5, pp. 69–77, 2012. View at Google Scholar
  40. A. Alonso and M. A. Hernán, “Temporal trends in the incidence of multiple sclerosis: a systematic review,” Neurology, vol. 71, no. 2, pp. 129–135, 2008. View at Publisher · View at Google Scholar · View at Scopus
  41. S. D. Rhodes, D. A. Bowie, and K. C. Hergenrather, “Collecting behavioural data using the world wide web: considerations for researchers,” Journal of Epidemiology and Community Health, vol. 57, no. 1, pp. 68–73, 2003. View at Publisher · View at Google Scholar · View at Scopus
  42. D. M. Cutler and A. Lleras-Muney, “Education and health: evaluating theories and evidence,” Working Paper No. 12352, National Bureau of Economic Research, Massachusetts, Mass, USA, 2006. View at Google Scholar
  43. L. Stepleman, M. C. Rutter, J. Hibbard, L. Johns, D. Wright, and M. Hughes, “Validation of the patient activation measure in a multiple sclerosis clinic sample and implications for care,” Disability and Rehabilitation, vol. 32, no. 19, pp. 1558–1567, 2010. View at Publisher · View at Google Scholar · View at Scopus
  44. W. M. Hopman, H. Coo, C. M. Edgar, E. V. McBride, A. G. Day, and D. G. Brunet, “Factors associated with health-related quality of life in multiple sclerosis,” The Canadian Journal of Neurological Sciences, vol. 34, no. 2, pp. 160–166, 2007. View at Google Scholar · View at Scopus
  45. I. Kister, E. Chamot, G. Cutter et al., “Increasing age at disability milestones among MS patients in the MSBase Registry,” Journal of the Neurological Sciences, vol. 318, no. 1-2, pp. 94–99, 2012. View at Google Scholar
  46. D. Miller, R. A. Rudick, and M. Hutchinson, “Patient-centered outcomes translating clinical efficacy into benefits on health-related quality of life,” Neurology, vol. 74, supplement 3, pp. S24–S35, 2010. View at Publisher · View at Google Scholar · View at Scopus
  47. S. B. Patten, C. A. Beck, J. V. A. Williams, C. Barbui, and L. M. Metz, “Major depression in multiple sclerosis: a population-based perspective,” Neurology, vol. 61, no. 11, pp. 1524–1527, 2003. View at Google Scholar · View at Scopus
  48. R. J. Siegert and D. A. Abernethy, “Depression in multiple sclerosis: a review,” Journal of Neurology, Neurosurgery and Psychiatry, vol. 76, no. 4, pp. 469–475, 2005. View at Publisher · View at Google Scholar · View at Scopus
  49. R. A. Marrie, R. Horwitz, G. Cutter, T. Tyry, D. Campagnolo, and T. Vollmer, “High frequency of adverse health behaviors in multiple sclerosis,” Multiple Sclerosis, vol. 15, no. 1, pp. 105–113, 2009. View at Publisher · View at Google Scholar · View at Scopus
  50. L. Skovgaard, P. H. Nicolajsen, E. Pedersen et al., “Use of complementary and alternative medicine among people with multiple sclerosis in the Nordic countries,” Autoimmune Diseases, vol. 2012, Article ID 841085, 13 pages, 2012. View at Publisher · View at Google Scholar
  51. S. Schwarz, C. Knorr, H. Geiger, and P. Flachenecker, “Complementary and alternative medicine for multiple sclerosis,” Multiple Sclerosis, vol. 14, no. 8, pp. 1113–1119, 2008. View at Publisher · View at Google Scholar · View at Scopus
  52. L. Shinto, V. Yadav, C. Morris, J. A. Lapidus, A. Senders, and D. Bourdette, “Demographic and health-related factors associated with complementary and alternative medicine (CAM) use in multiple sclerosis,” Multiple Sclerosis, vol. 12, no. 1, pp. 94–100, 2006. View at Publisher · View at Google Scholar · View at Scopus
  53. G. A. Jelinek and C. S. Hassed, “Managing multiple sclerosis in primary care: are we forgetting something?” Quality in Primary Care, vol. 17, no. 1, pp. 55–61, 2009. View at Google Scholar · View at Scopus
  54. M. P. M. Li, G. A. Jelinek, T. J. Weiland et al., “Effect of a residential retreat promoting lifestyle modifications on health-related quality of life in people with multiple sclerosis,” Quality in Primary Care, vol. 18, no. 6, pp. 379–389, 2010. View at Google Scholar · View at Scopus
  55. R. H. Dworkin, D. Bates, J. H. D. Millar, and D. W. Paty, “Linoleic acid and multiple sclerosis: a reanalysis of three double-blind trials,” Neurology, vol. 34, no. 11, pp. 1441–1445, 1984. View at Google Scholar · View at Scopus
  56. J. H. Hibbard, E. R. Mahoney, R. Stock, and M. Tusler, “Do increases in patient activation result in improved self-management behaviors?” Health Services Research, vol. 42, no. 4, pp. 1443–1463, 2007. View at Publisher · View at Google Scholar · View at Scopus
  57. A. Riazi, A. J. Thompson, and J. C. Hobart, “Self-efficacy predicts self-reported health status in multiple sclerosis,” Multiple Sclerosis, vol. 10, no. 1, pp. 61–66, 2004. View at Publisher · View at Google Scholar · View at Scopus
  58. D. M. Mosen, J. Schmittdiel, J. Hibbard, D. Sobel, C. Remmers, and J. Bellows, “Is patient activation associated with outcomes of care for adults with chronic conditions?” Journal of Ambulatory Care Management, vol. 30, no. 1, pp. 21–29, 2007. View at Google Scholar · View at Scopus
  59. P. Wicks, M. Massagli, J. Frost et al., “Sharing health data for better outcomes on patientslikeme,” Journal of Medical Internet Research, vol. 12, no. 2, article e19, 2010. View at Publisher · View at Google Scholar · View at Scopus
  60. C. Mendelson, “Recruiting participants for research from online communities,” Computers Informatics Nursing, vol. 25, no. 6, pp. 317–323, 2007. View at Publisher · View at Google Scholar · View at Scopus
  61. R. A. Marrie, G. Cutter, T. Tyry, D. Campagnolo, and T. Vollmer, “Validation of the NARCOMS registry: diagnosis,” Multiple Sclerosis, vol. 13, no. 6, pp. 770–775, 2007. View at Publisher · View at Google Scholar · View at Scopus
  62. S. M. Gold, H. Schulz, A. Mönch, K. H. Schulz, and C. Heesen, “Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures,” Multiple Sclerosis, vol. 9, no. 4, pp. 404–410, 2003. View at Publisher · View at Google Scholar · View at Scopus
  63. G. Ingram, E. Colley, Y. Ben-Shlomo et al., “Validity of patient-derived disability and clinical data in multiple sclerosis,” Multiple Sclerosis, vol. 16, no. 4, pp. 472–479, 2010. View at Publisher · View at Google Scholar · View at Scopus