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Information and resources important to the quality of life of people living with multiple sclerosis

Published online by Cambridge University Press:  09 November 2020

Malachy Bishop ,
Stuart Rumrill ,
Bradley McDaniels ,
Jian Li ,
Robert Fraser ,
Phillip D. Rumrill ,
Muna Bhattarai  and
Mirang Park
Malachy Bishop*
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Stuart Rumrill
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Bradley McDaniels
Affiliation:
Department of Rehabilitation and Health Services, University of North Texas, Denton, Texas, USA
Jian Li
Affiliation:
School of Foundations, Leadership, and Administration, Kent State University, Kent, OH, USA
Robert Fraser
Affiliation:
Department of Rehabilitation Medicine, University of Washington, Seattle, Washington, USA
Phillip D. Rumrill
Affiliation:
Department of Early Childhood, Special Education, and Counselor Education, Director of Research and Training, Human Development Institute, University of Kentucky, Lexington, Kentucky, USA
Muna Bhattarai
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
Mirang Park
Affiliation:
Department of Rehabilitation Psychology and Special Education, University of Wisconsin-Madison, Madison, Wisconsin, USA
*
*Corresponding author. Email: [email protected]
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Abstract

Multiple sclerosis (MS) is a chronic, typically progressive immune-mediated disease characterized by inflammation and demyelination in the central nervous system (CNS), and is associated with a wide range of neurological, physical, and psychosocial effects. For people living with MS, access to relevant, timely, and accessible health information and resources may contribute to effective illness management, psychosocial health, and quality of life (QOL). In this study, we sought to increase understanding of the specific types of information most wanted by people with MS, as well as the sources and effects of this information. Specifically, we surveyed 748 adults with MS about (a) the sources from which they obtain information about MS, (b) the type of information that is most important in terms of improving their QOL, and (c) specific topics about which they would like to have more information, services, or resources. Content analysis of the qualitative results demonstrated the diversity of information sources accessed by people with MS and the importance of providing information through different formats and media. The participants prioritized information related to new MS medications and treatments, physical and mental health and wellness, and local opportunities for support. Implications for practicing rehabilitation counselors are discussed.

Keywords

Multiple sclerosishealth informationquality of life
Type
Articles
Information
The Australian Journal of Rehabilitation Counselling , Volume 26 , Issue 2 , December 2020 , pp. 92 - 104
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Copyright
© The Author(s) 2020. Published by Cambridge University Press and The Australian Journal of Rehabilitation Counselling

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Footnotes

This manuscript is an original work that has not been submitted to nor published anywhere else. This manuscript is based on a large national study conducted for the National MS Society. The results of the analyses presented in this manuscript have previously been provided to the National MS Society in the context of an unpublished final project report. Publications regarding separate research questions using the same original participant sample are planned or have been produced, however not based on current research questions or topics. All authors have read and approved the paper and have met the ICMJE criteria for authorship. The authors have read the discussion provided by the ICMJE on overlapping publications.

References

Bishop, M., Frain, M. P., Espinosa, C. T., & Stenhoff, D. M. (2009). Sources of information about multiple sclerosis: Information seeking and personal, demographic, and MS variables. Journal of Vocational Rehabilitation, 31(2), 107–117.CrossRefGoogle Scholar
Bishop, M., & Frain, M. (2007). Development and initial analysis of the Multiple Sclerosis Self-Management Scale. International Journal of Multiple Sclerosis Care, 9(2), 35–42.Google Scholar
Bishop, M., Rumrill, P. D., Li, J., & Fraser, R. (2019). Evaluation of the quality of life impact of the National Multiple Sclerosis Society FY 2016–2018 Strategic Plan and quality of life impact metrics: Final Report. (Report to the National Multiple Sclerosis Society, New York, NY). University of Wisconsin-Madison.Google Scholar
Calabro, R. S., De Luca, R., Conti-Nibali, V., Reitano, S., Leo, A., & Bramanti, P. (2014). Sexual dysfunction in male patients with multiple sclerosis: A need for counseling! International Journal of Neuroscience, 124(8), 547–557.CrossRefGoogle ScholarPubMed
Chiu, C-Y., Bishop, M., McDaniels, B., Kim, B.-J., & Tiro, L. (2018). A population-based investigation of healthcare needs and preferences in American adults with MS. Journal of Patient Experience, 7(1), 34–41. https://doi.org/10.1177/2374373518812078 CrossRefGoogle Scholar
Chiu, C., Bishop, M., Pionke, J. J., Strauser, D., & Santens, R. L. (2017). Barriers to the accessibility and continuity of health-care services in people with multiple sclerosis. International Journal of MS Care, 19(6), 313–321.CrossRefGoogle ScholarPubMed
Chiu, C.Y., Park, M., Hoffman, T., Campbell, M., & Bishop, M. (2019). Descriptive analysis of free-text comments on healthcare priorities and experiences in a national sample of multiple sclerosis. Multiple Sclerosis and Related Disorders, 34, 141–149.CrossRefGoogle Scholar
Colombo, C., Filippini, G., Synnot, A., Hill, S., Guglielmino, R., Traversa, S., Confalonieri, P., Mosconi, P., & Tramacere, I. (2016). Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: The IN-DEEP project. BMC Neurology, 16(3), 1–10.CrossRefGoogle ScholarPubMed
Colombo, C., Mosconi, P., Confalonieri, P., Baroni, I., Traversa, S., Hill, S. J., Synnot, A. J., Oprandi, N., & Filippini, G. (2014). Web search behavior and information needs of people with multiple sclerosis: Focus group study and analysis of online postings. Journal of Medical Internet Research, 3(3). https://doi.org/10.2196/ijmr.3034 Google ScholarPubMed
Defriez, M., Griffiths, D., Millett, C., Thakrar, D.N. & Winterbotham, M. (2003) The perception of the current provision of care for multiple sclerosis sufferers in the community. Primary Health Care Research and Development, 4(3), 233–243.CrossRefGoogle Scholar
Dennison, L., Brown, M., Kirby, S., & Galea, I. (2018). Do people with multiple sclerosis want to know their prognosis? A UK nationwide study. PLoS ONE, 13(2), e0193407. https://doi.org/10.1371/journal.pone.0193407 CrossRefGoogle ScholarPubMed
Dunn, M., Bhargava, P., & Kalb, R. (2015). Your patients with multiple sclerosis have set wellness as a high priority-and the National Multiple Sclerosis Society is responding. US Neurology, 11(2), 80–86.CrossRefGoogle Scholar
European Multiple Sclerosis Platform (October, 2004). European-wide recommendations on rehabilitation for people affected by multiple sclerosis . European MS Platform, Brussels, Belgium.Google Scholar
Fernandez, O. (2013). Integrating the tools for an individualized prognosis in multiple sclerosis. Journal of Neurological Sciences, 331(1), 10–13.CrossRefGoogle ScholarPubMed
Forbes, A., While, A., & Taylor, M. (2007). What people with multiple sclerosis perceive to be important to meeting their needs. JAN, 58 (1), 11–22.CrossRefGoogle ScholarPubMed
Galushko, M., Golla, H., Strupp, J., Karbach, U., Kaiser, C., Ernstmann, N., Pfaff, H., Ostgathe, C., & Voltz, R. (2014). Unmet needs of patients feeling severely affected by multiple sclerosis in Germany: A qualitative study. Journal of Palliative Medicine, 17(3), 274–281.CrossRefGoogle ScholarPubMed
Hepworth, M., & Harrison, J. (2004). A survey of the information needs of people with multiple sclerosis. Health Informatics Journal, 10(1), 49–69.CrossRefGoogle Scholar
Hsieh, H. F., & Shannon, S. E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.CrossRefGoogle ScholarPubMed
Kersten, P., McLellan, D.L., Gross-Paju, K., Grigoriadis, N., Bencivenga, R., Beneton, C., Charlier, M., Ketelaer, P. & Thompson, A.J. (2000) A questionnaire assessment of unmet needs for rehabilitation services and resources for people with multiple sclerosis: Results of a pilot survey in five European countries. Clinical Rehabilitation, 14(1), 42–49.CrossRefGoogle ScholarPubMed
Kinyanjui, B., McDaniels, B., Frain, M., Bishop, M., Chiu, C-Y., Lee, B., & Tiro, L. (2018). Healthcare and rehabilitation needs of individuals with multiple sclerosis. Contemporary Research in Disabilities and Rehabilitation, 1(1), 2–17.Google Scholar
Koopman, W.J., Benbow, C.L., & Vandervoort, M. (2006). Top 10 needs of people with multiple sclerosis and their significant others. Journal of Neuroscience Nursing, 38(5), 369–373.CrossRefGoogle ScholarPubMed
Li, J., Rumrill, P., Bishop, M., & Leslie, M. (2020). Perceived health and functional status and work environmental factors as determinants of psychological stress among employed people with multiple sclerosis. Rehabilitation Research, Policy, and Education, 34(3), 145–158.Google Scholar
MacLurg, K., Reilly, P., Hawkins, S., Gray, O., Evason, E., & Whittington, D. (2005). A primary care-based needs assessment of people with multiple sclerosis. British Journal of General Practice, 55, 385–390 Google ScholarPubMed
Marrie, R. A., Salter, A. R., Tyry, T., Fox, R. J., & Cutter, G. R. (2013). Preferred sources of health information in persons with multiple sclerosis: degree of trust and information sought. Journal of Medical Internet Research, 15(4), e67. https://doi.org/10.2196/jmir.2466 CrossRefGoogle ScholarPubMed
Marrie, R. A., Walker, J. R., Graff, L. A., Patten, S. B., Bolton, J. M., Marriott, J. J., Fisk, J. D., Hitchon, C., Peschken, C., & Bernstein, C. N. (2019). Gender differences in information needs and preferences regarding depression among individuals with multiple sclerosis, inflammatory bowel disease and rheumatoid arthritis. Patient Education and Counseling, 102, 1722–1729.CrossRefGoogle ScholarPubMed
Matti, A. I., McCarl, H., Klaer, P., Keane, M. C., & Chen, C. S. (2010). Multiple sclerosis: Patients’ information sources and needs on disease symptoms and management. Patient Preference and Adherence, 4, 157–161. https://doi.org/10.2147/ppa.s10824 CrossRefGoogle ScholarPubMed
Mazanderani, F., Hughes, N., Hardy, C., Sillence, E., & Powell, J. (2019). Health information work and the enactment of care in couples and families affected by multiple sclerosis. Sociology of Health & Illness, 41(2), 395–410.CrossRefGoogle ScholarPubMed
Moccia, M., Carotenuto, A., Massarelli, M., Lanzillo, R., & Brescia Morra, V. (2016). Can people with multiple sclerosis actually understand what they read in the Internet age? Journal of Clinical Neuroscience, 25, 167–168.CrossRefGoogle ScholarPubMed
Motl, R. W., Mowry, E. M., Ehde, D. M., LaRocca, N. G., Smith, K., Costello, K., Sinto, L., Ng, A., Sullivan, A., Geiser, B., McCully, K., Fernhall, B., Bishop, M., Plow, M., Casaccia, P., & Chiaravalloti, N. (2018). Wellness and multiple sclerosis: The National MS Society establishes a Wellness Research Working Group and research priorities. Multiple Sclerosis Journal, 24(3), 262–267.CrossRefGoogle Scholar
Morgan-Followell, B. N., Nicholas, J. A., & Weisleder, P. (2014). Reproductive issues in women with multiple sclerosis: Ethical considerations. Continuum: Journal of Media and Cultural Studies, 20(1), 177–180.Google ScholarPubMed
National Multiple Sclerosis Society (2018). MS prevalence. New York: National Multiple Sclerosis Society. Retrieved from: http://www.nationalmssociety.org/About-the-Society/MS-Prevalence Google Scholar
Rumrill, P., & Bellini, J. (2018). Research in rehabilitation counseling (3rd ed.). Springfield, IL: Charles C. Thomas Publisher.Google Scholar
Rumrill, P. (2016). Return to work and job retention strategies for people with multiple sclerosis. In Schultz, I. and Gatchel, R. (Eds.), Handbook of return to work: From research to practice (pp. 545–561). New York: Springer Publishing Company.CrossRefGoogle Scholar
Rumrill, P., & Roessler, R. (2015). An overview of multiple sclerosis: Medical, psychosocial, and vocational aspects of a chronic and unpredictable neurological disorder. Rehabilitation Research, Policy, and Education, 29(2), 122–134.CrossRefGoogle Scholar
Rumrill, P., Roessler, R., Li, J., Daly, K., & Leslie, M. (2015). The employment concerns of Americans with multiple sclerosis: Perspectives from a national sample. Work: A Journal of Prevention, Assessment, and Rehabilitation, 52, 735–748.CrossRefGoogle Scholar
Rumrill, S. P., Bishop, M., Rumrill, P. D., & Hendricks, D. J. (in press). Using the Work Experience Survey and the Job Accommodations Network to identify reasonable accommodations in the workplace: Case studies of African American Women with multiple sclerosis. Rehabilitation Research, Policy, and Education. Google Scholar
Synnot, A. J., Hill, S. J., Garner, K. A., Summers, M. P., Filippini, G., Osborne, R. H., Shapland, S. D. P., Colombo, C., & Mosconi, P. (2016). Online health information seeking: How people with multiple sclerosis find, assess and integrate treatment information to manage their health. Health Expectations, 19(3), 727–737. https://doi.org/10.1111/hex.12253 CrossRefGoogle ScholarPubMed
Tan, S. S., & Goonawardene, N. (2017). Internet health information seeking and the patient-physician relationship: A systematic review. Journal of Medical Internet Research, 19(1), e9. https://doi.org/10.2196/jmir.5729 CrossRefGoogle ScholarPubMed
Wallin, M. T., Culpepper, W. J., Campbell, J. D., Nelson, L. M., Langer-Gould, A., Marrie, R. A., Cutter, G. R., Kaye, W. E., Wagner, L., Tremlett, H., Buka, S. L., Dilokthornsakul, P., Topol, B., Chen, L. H., & LaRocca, N. G. (2019). The prevalence of MS in the United States. Neurology, 92(10), e1029 LP-e1040. https://doi.org/10.1212/WNL.0000000000007035 CrossRefGoogle ScholarPubMed