“Can I exercise? Would it help? Would it not?”: exploring the experiences of people with relapsing remitting multiple sclerosis engaging with physical activity during a relapse: a qualitative study

References

• Pilutti LA, Platta ME, Motl RW, et al. The safety of exercise training in multiple sclerosis: a systematic review. J Neurol Sci. 2014;343(1–2):3–7.
   PubMed Web of Science ®Google Scholar
• Compston A, Coles A. Multiple sclerosis. Lancet. 2008;372(9648):1502–1517.
   PubMed Web of Science ®Google Scholar
• Atlas of MS 3rd edition. Part 1: mapping multiple sclerosis around the world key epidemiology findings [Internet]; 2020; [cited 2021 Oct 15]. Available from: https://www.msif.org/wp-content/uploads/2020/10/Atlas-3rd-Edition-Epidemiology-report-EN-updated-30-9-20.pdf
   Google Scholar
• Mackenzie IS, Morant SV, Bloomfield GA, et al. Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the general practice research database. J Neurol Neurosurg Psychiatry. 2014;85(1):76–84.
   PubMed Web of Science ®Google Scholar
• Lublin FD. New multiple sclerosis phenotypic classification. Eur Neurol. 2014;72(s1):1–5.
   PubMed Web of Science ®Google Scholar
• Polman CH, Reingold SC, Banwell B, et al. Diagnostic criteria for multiple sclerosis: 2010 revisions to the McDonald criteria. Ann Neurol. 2011;69(2):292–302.
   PubMed Web of Science ®Google Scholar
• Thompson AJ, Baranzini SE, Geurts J, et al. Multiple sclerosis. Lancet. 2018;391(10130):1622–1636.
   PubMed Web of Science ®Google Scholar
• Inusah S, Sormani MP, Cofield SS, et al. Assessing changes in relapse rates in multiple sclerosis. Mult Scler. 2010;16(12):1414–1421.
   PubMed Web of Science ®Google Scholar
• Rooney S, Albalawi H, Paul L. Exercise in the management of multiple sclerosis relapses: current evidence and future perspectives. Neurodegen Dis Manage. 2020;10(2):99–111.
   Web of Science ®Google Scholar
• Duddy D, Lee M, Pearson M, et al. The UK patient experience of relapse in multiple sclerosis treated with first disease modifying therapies. Mult Scler Relat Disord. 2014;3(4):450–456.
   PubMed Web of Science ®Google Scholar
• Stewart T, Spelman T, Havrdova E, et al. Contribution of different relapse phenotypes to disability in multiple sclerosis. Mult Scler. 2017;23(2):266–276.
   PubMed Web of Science ®Google Scholar
• Nickerson M, Cofield SS, Tyry T, et al. Impact of multiple sclerosis relapse: the NARCOMS participant perspective. Mult Scler Relat Disord. 2015;4(3):234–240.
   PubMed Web of Science ®Google Scholar
• Hirst CL, Ingram G, Pickersgill TP, et al. Temporal evolution of remission following multiple sclerosis relapse and predictors of outcome. Mult Scler. 2012;18(8):1152–1158.
   PubMed Web of Science ®Google Scholar
• Iuliano G, Napoletano R, Esposito A. Multiple sclerosis: relapses and timing of remissions. Eur Neurol. 2008;59(1–2):44–48.
   PubMed Web of Science ®Google Scholar
• Lublin FD. The incomplete nature of multiple sclerosis relapse resolution. J Neurol Sci. 2007;256(Suppl. 1):S14–S88.
   PubMedGoogle Scholar
• National Institute for Health and Care Excellence. Management of multiple sclerosis in primary and secondary care (2014) (Clinical Guideline 186) [Internet]; 2019 [cited 2022 Jan 9]. Available from: https://www.nice.org.uk/guidance/cg186
   Google Scholar
• Kalb R, Brown TR, Coote S, et al. Exercise and lifestyle physical activity recommendations for people with multiple sclerosis throughout the disease course. Mult Scler. 2020;26(12):1459–1469.
   PubMed Web of Science ®Google Scholar
• Motl RW, Sandroff BM, Kwakkel G, et al. Exercise in patients with multiple sclerosis. Lancet Neurol. 2017;16(10):848–856.
   PubMed Web of Science ®Google Scholar
• Tallner A, Waschbisch A, Wenny I, et al. Multiple sclerosis relapses are not associated with exercise. Mult Scler. 2012;18(2):232–235.
   PubMed Web of Science ®Google Scholar
• Caspersen C, Powell K, Christenson G. Physical activity, exercise, and physical fitness: definitions and distinctions for health-related research. Public Health Rep. 1985;100(2):126–131.
   PubMed Web of Science ®Google Scholar
• Kinnett-Hopkins D, Adamson B, Rougeau K, et al. People with MS are less physically active than healthy controls but as active as those with other chronic diseases: an updated meta-analysis. Mult Scler Relat Disord. 2017;13:38–43.
   PubMed Web of Science ®Google Scholar
• Motl R, McAuley E, Snook E. Physical activity and multiple sclerosis: a meta-analysis. Mult Scler. 2005;11(4):459–463.
   PubMed Web of Science ®Google Scholar
• Buchan DS, Ollis S, Thomas NE, et al. Physical activity behaviour: an overview of current and emergent theoretical practices. J Obes. 2012;2012:546459.
   PubMedGoogle Scholar
• van der Ploeg HP, van der Beek AJ, van der Woude LH, et al. Physical activity for people with a disability: a conceptual model. Sports Med. 2004;34(10):639–649.
   PubMed Web of Science ®Google Scholar
• International Classification of Functioning, Disability, and Health: ICF. Geneva: World Health Organization [Internet]; 2001 [cited 2021 Oct 15]. Available from: https://www.who.int/standards/classifications/international-classification-of-functioning-disability-and-health
   Google Scholar
• de Vries H, Dijkstra M, Kuhlman P. Self-efficacy: the third factor besides attitude and subjective norm as a predictor of behavioural intentions. Health Educ Res. 1988;3(3):273–282.
   Google Scholar
• Learmonth YC, Motl RW. Physical activity and exercise training in multiple sclerosis: a review and content analysis of qualitative research identifying perceived determinants and consequences. Disabil Rehabil. 2016;38(13):1227–1242.
   PubMed Web of Science ®Google Scholar
• Motl RW, Learmonth YC, Pilutti LA, et al. Top 10 research questions related to physical activity and multiple sclerosis. Res Q Exerc Sport. 2015;86(2):117–129.
   PubMed Web of Science ®Google Scholar
• Craig J, Young CA, Ennis M, et al. A randomised controlled trial comparing rehabilitation against standard therapy in multiple sclerosis patients receiving intravenous steroid treatment. J Neurol Neurosurg Psychiatry. 2003;74(9):1225–1230.
   PubMed Web of Science ®Google Scholar
• Nedeljkovic U, Dackovic J, Tepavcevic DK, et al. Multidisciplinary rehabilitation and steroids in the management of multiple sclerosis relapses: a randomized controlled trial. Arch Med Sci. 2016;12(2):380–389.
   PubMed Web of Science ®Google Scholar
• Majdinasab N, Motl RW, Mokhtarzade M, et al. Acute responses of cytokines and adipokines to aerobic exercise in relapsing vs. remitting women with multiple sclerosis. Complement Ther Clin Pract. 2018;31:295–301.
   PubMed Web of Science ®Google Scholar
• Adamson BC, Adamson MD, Littlefield MM, et al. Move it or lose it: perceptions of the impact of physical activity on multiple sclerosis symptoms, relapse and disability identity. Qual Res Sport Exerc Health. 2018;10(4):457–475.
   Web of Science ®Google Scholar
• King N, Horrocks C, Brooks J. Interviews in qualitative research. 2nd ed. London: SAGE Publications Ltd; 2019.
   Google Scholar
• Green J, Thorogood N. Qualitative methods for health research. 6th ed. Los Angeles: SAGE Publications Ltd; 2018.
   Google Scholar
• Tong A, Sainsbury P, Craig J. Consolidated Criteria for Reporting Qualitative Research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–357.
   PubMed Web of Science ®Google Scholar
• Multiple Sclerosis Trust. Managing relapses [Internet]; 2019 [cited 2019 Aug 30]. Available from: https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses
   Google Scholar
• Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS). Neurology. 1983;33(11):1444–1452.
   PubMed Web of Science ®Google Scholar
• Thompson AJ, Banwell BL, Barkhof F, et al. Diagnosis of multiple sclerosis: 2017 revisions of the McDonald criteria. Lancet Neurol. 2018;17(2):162–173.
   PubMed Web of Science ®Google Scholar
• Asano M, Hawken K, Turpin M, et al. The lived experience of multiple sclerosis relapse: how adults with multiple sclerosis processed their relapse experience and evaluated their need for postrelapse care. Mult Scler Int. 2015;2015:351416–351418.
   PubMedGoogle Scholar
• Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52(4):1893–1907.
   PubMed Web of Science ®Google Scholar
• Learmonth Y, Motl R, Sandroff B, et al. Validation of Patient Determined Disease Steps (PDDS) scale scores in persons with multiple sclerosis. BMC Neurol. 2013;13:37.
   PubMed Web of Science ®Google Scholar
• Craig C, Marshall A, Sjöström M, et al. International Physical Activity Questionnaire: 12-country reliability and validity. Med Sci Sports Exerc. 2003;35(8):1381–1395.
   PubMed Web of Science ®Google Scholar
• Sandroff B, Dlugonski D, Weikert M, et al. Physical activity and multiple sclerosis: new insights regarding inactivity. Acta Neurol Scand. 2012;126(4):256–262.
   PubMed Web of Science ®Google Scholar
• Beckerman H, de Groot V, Scholten MA, et al. Physical activity behavior of people with multiple sclerosis: understanding how they can become more physically active. Phys Ther. 2010;90(7):1001–1013.
   PubMed Web of Science ®Google Scholar
• van Adrichem EJ, van de Zande SC, Dekker R, et al. Perceived barriers to and facilitators of physical activity in recipients of solid organ transplantation, a qualitative study. PLOS One. 2016;11(9):e0162725.
   PubMed Web of Science ®Google Scholar
• Ando H, Cousins R, Young C. Achieving saturation in thematic analysis: development and refinement of a codebook. Comprehens Psychol. 2014;3(4):4.
   Google Scholar
• Qualitative data analysis software. Version. 12. QSR International Pty Ltd.; 2018. Available from: https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home
   Google Scholar
• Ritchie J, Spencer L. Qualitative data analysis for applied policy research. In: Bryman A, Burgess R, editors. [ebook]. Analyzing qualitative data. London: Routledge; 1994. p. 172–194.
   Google Scholar
• Guba E. Criteria for assessing the trustworthiness of naturalistic inquiries. Educ Commun Technol J. 1981;29(2):75–91.
   Web of Science ®Google Scholar
• Kayes NM, McPherson KM, Taylor D, et al. Facilitators and barriers to engagement in physical activity for people with multiple sclerosis: a qualitative investigation. Disabil Rehabil. 2011;33(8):625–642.
   PubMed Web of Science ®Google Scholar
• Smith C, Olson K, Hale L, et al. How does fatigue influence community-based exercise participation in people with multiple sclerosis? Disabil Rehabil. 2011;33(23–24):2362–2371.
   PubMed Web of Science ®Google Scholar
• Nilsagård Y, Lundholm C, Denison E, et al. Predicting accidental falls in people with multiple sclerosis – a longitudinal study. Clin Rehabil. 2009;23(3):259–269.
   PubMed Web of Science ®Google Scholar
• Davenport S, Dickinson A, Minns Lowe C. Therapy-based exercise from the perspective of adult patients: a qualitative systematic review conducted using an ethnographic approach. Clin Rehabil. 2019;33(12):1963–1977.
   PubMed Web of Science ®Google Scholar
• Brown C, Kitchen K, Nicoll K. Barriers and facilitators related to participation in aquafitness programs for people with multiple sclerosis: a pilot study. Int J MS Care. 2012;14(3):132–141.
   PubMedGoogle Scholar
• Dlugonski D, Joyce RJ, Motl RW. Meanings, motivations, and strategies for engaging in physical activity among women with multiple sclerosis. Disabil Rehabil. 2012;34(25):2148–2157.
   PubMed Web of Science ®Google Scholar
• Dodd KJ, Taylor NF, Denisenko S, et al. A qualitative analysis of a progressive resistance exercise programme for people with multiple sclerosis. Disabil Rehabil. 2006;28(18):1127–1134.
   PubMed Web of Science ®Google Scholar
• Feinstein A, Magalhaes S, Richard JF, et al. The link between multiple sclerosis and depression. Nat Rev Neurol. 2014;10(9):507–517.
   PubMed Web of Science ®Google Scholar
• Bandura A. Social cognitive theory: an agentic perspective. Annu Rev Psychol. 2001;52:1–26.
   PubMed Web of Science ®Google Scholar
• Albor C, du Sautoy T, Kali Vanan N, et al. Ethnicity and prevalence of multiple sclerosis in East London. Mult Scler. 2017;23(1):36–42.
   PubMedGoogle Scholar
• Thompson AJ, Kobelt G, Berg J, et al. New insights into the burden and costs of multiple sclerosis in Europe: results for the United Kingdom. Mult Scler. 2017;23(2_Suppl.):204–216.
   PubMed Web of Science ®Google Scholar
• National Institute Health Research. Going the extra miles: improving the nation’s health and wellbeing through public involvement in research [Internet]; 2015 [cited 2019 Apr 19]. Available from: https://www.nihr.ac.uk/patients-and-public/documents/Going-the-Extra-Mile.pdf
   Google Scholar
• Edwards NC, Munsell M, Menzin J, et al. Comorbidity in US patients with multiple sclerosis. Patient Relat Outcome Meas. 2018;9:97–102.
   PubMed Web of Science ®Google Scholar