Abstract
Purpose
Multiple sclerosis (MS) is a neurological disease that has different clinical presentations and illness trajectories. The aim of this study was to explore factors that are important for quality of life (QoL) of people with MS (pwMS), and to understand how they may differ across three subtypes.
Methods
Both convenience and purposive sampling were employed. Semi-structured interviews were conducted with people with relapsing–remitting MS (n = 16), secondary progressive MS (n = 14), and primary progressive MS (n = 13). All interviews were audio recorded and then transcribed verbatim for thematic analysis involving both inductive and deductive processes. A separate analysis for each subtype was made during the inductive process before examining for similarities and differences across the three subtypes in the deductive process.
Findings
Four factors were identified to have an important influence on QoL of pwMS: restricted and disrupted enjoyment, disturbed future, challenged sense of self, and well-being of significant others. The themes reflect how pwMS commonly perceived enjoyment as a purpose of life, while also illustrating how their QoL may be questioned because of new perspectives going forward with MS, challenges to their sense of self, and increased concerns for their significant others as a result of MS. Subtype differences were attributed to different illness trajectories: relapsing or progressive.
Conclusions
There are subtype differences in the negative impact of MS on QoL. Clinicians are encouraged to understand the challenges of different illness trajectories, in particular the traumatic nature of relapses and steady worsening of symptoms among those with progressive subtypes of MS.
Similar content being viewed by others
References
Brownlee, W. J., Hardy, T. A., Fazekas, F., & Miller, D. H. (2017). Diagnosis of multiple sclerosis: progress and challenges. The Lancet, 389(10076), 1336–1346. https://doi.org/10.1016/S0140-6736(16)30959-X
Sand, I. B. K., & Lublin, F. D. (2013). Diagnosis and differential diagnosis of multiple sclerosis. Continuum, 19(4), 922–943. https://doi.org/10.1212/01.CON.0000433290.15468.21
Miller, D. H., Chard, D. T., & Ciccarelli, O. (2012). Clinically isolated syndromes. The Lancet Neurology, 11(2), 157–169. https://doi.org/10.1016/S1474-4422(11)70274-5
NICE (2014). Multiple sclerosis in adults: Management. Clinical guideline (CG186). National institute for health and care excellence. ISBN: 978-1-4731-0778-6. www.nice.org.uk/guidance/cg186. Accessed 24 Nov 2021
De Angelis, F., John, N. A., & Brownlee, W. J. (2018). Disease-modifying therapies for multiple sclerosis. BMJ, 363, k4674. https://doi.org/10.1136/bmj.k4674
Wingerchuk, D. M., & Weinshenker, B. G. (2016). Disease modifying therapies for relapsing multiple sclerosis. BMJ, 354, i3518. https://doi.org/10.1136/bmj.i3518
World Health Organization Quality of Life Group. (1996). What quality of life? World health organization quality of life assessment. World Health Forum, 17(4), 354–356.
Diener, E., Oishi, S., & Lucas, R. E. (2003). Personality, culture, and subjective well-being: Emotional and cognitive evaluation of life. Annual Review of Psychology, 54, 403–425. https://doi.org/10.1146/annurev.psych.54.101601.145056
Svensson, O., & Hallberg, L. R. M. (2011). Hunting for health, well-being, and quality of life. International Journal of Qualitative Studies on Health and Well-being, 6(2), 7137. https://doi.org/10.3402/qhw.v6i2.7137
Diener, E. (2009). Subjective well-being. The Science of Well-Being, 37, 11–58. https://doi.org/10.1007/978-90-481-2350-6_2
Diener, E. D., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of personality assessment, 49(1), 71–75. https://doi.org/10.1207/s15327752jpa4901_13
Hagerty, M. R., Cummins, R. A., Ferriss, A. L., Land, K., Michalos, A. C., Peterson, M., Sharp, A., Sirgy, J., & Vogal, J. (2001). Quality of life indexes for national policy: Review and agenda for research. Social Indicators Research, 55(1), 1–96. https://doi.org/10.1023/A:1010811312332
Veenhoven, R. (2009). World database of happiness tool for dealing with the “Data-Deluge.” Psihologijske Teme, 18(2), 221–246.
Veenhoven, R. (2000). The four qualities of life: Ordering concepts and measures of the good life. Journal of Happiness Studies, 1, 1–39. https://doi.org/10.1023/A:1010072010360
Veenhoven, R. (2010). Greater happiness for a greater number. Journal of Happiness Studies, 11(5), 605–629. https://doi.org/10.1007/s10902-010-9204-z
Gil-González, I., Martín-Rodríguez, A., Conrad, R., & Pérez-San-Gregorio, M. Á. (2020). Quality of life in adults with multiple sclerosis: A systematic review. British Medical Journal Open, 10(11), e041249. https://doi.org/10.1136/bmjopen-2020-041249
Moons, P., Budts, W., & De Geest, S. (2006). Critique on the conceptualisation of quality of life: A review and evaluation of different conceptual approaches. International journal of nursing studies, 43(7), 891–901. https://doi.org/10.1016/j.ijnurstu.2006.03.015
Mitchell, A. J., Benito-León, J., González, J. M. M., & Rivera-Navarro, J. (2005). Quality of life and its assessment in multiple sclerosis: Integrating physical and psychological components of wellbeing. The Lancet Neurology, 4(9), 556–566. https://doi.org/10.1016/S1474-4422(05)70166-6
Pfennings, L. E. M. A., Van der Ploeg, H. M., Cohen, L., Bramsen, I., Polman, C. H., Lankhorst, G. J., & Vleugels, L. (1999). A health-related quality of life questionnaire for multiple sclerosis patients. Acta neurologica scandinavica, 100(3), 148–155. https://doi.org/10.1111/j.1600-0404.1999.tb00730.x
Rojas, M. (2011). The ‘Measurement of economic performance and social progress’ report and quality of life: Moving forward. Social Indicators Research, 102(1), 169–180. https://doi.org/10.1007/s11205-010-9737-x
Cichy, K. E., Bishop, M., Roessler, R. T., Li, J., & Rumrill, P. D., Jr. (2016). Non-vocational health-related correlates of quality of life for older adults living with multiple sclerosis. Journal of Rehabilitation, 82(3), 36–44.
Gross, H. J., & Watson, C. (2017). Characteristics, burden of illness, and physical functioning of patients with relapsing-remitting and secondary progressive multiple sclerosis: A cross-sectional US survey. Neuropsychiatric Disease and Treatment, 13, 1349–1357. https://doi.org/10.2147/NDT.S132079
Kratz, A. L., Ehde, D. M., Hanley, M. A., Jensen, M. P., Osborne, T. L., & Kraft, G. H. (2016). Cross-sectional examination of the associations between symptoms, community integration, and mental health in multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 97(3), 386–394. https://doi.org/10.1016/j.apmr.2015.10.093
Papuć, E., & Stelmasiak, Z. (2012). Factors predicting quality of life in a group of Polish subjects with multiple sclerosis: Accounting for functional state, socio-demographic and clinical factors. Clinical Neurology and Neurosurgery, 114(4), 341–346. https://doi.org/10.1016/j.clineuro.2011.11.012
Pittock, S. J., Mayr, W. T., McClelland, R. L., Jorgensen, N. W., Weigand, S. D., Noseworthy, J. H., & Rodriguez, M. (2004). Quality of life is favorable for most patients with multiple sclerosis: A population-based cohort study. Archives of Neurology, 61(5), 679–686. https://doi.org/10.1001/archneur.61.5.679
Denzin, N. K., & Lincoln, Y. S. (2011). The discipline and practice of qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), The sage handbook of qualitative research (4th ed., pp. 97–128). Sage.
Guba, E. G., & Lincoln, Y. S. (1994). Competing paradigms in qualitative research. In N. K. Denzin & Y. S. Lincoln (Eds.), Handbook of qualitative research (pp. 105–117). Sage.
Desborough, J., Brunoro, C., Parkinson, A., Chisholm, K., Elisha, M., Drew, J., Fanning, V., Lueck, C., Bruestle, A., Cook, M., Suominen, H., Tricol, A., Henschke, A., & Phillips, C. (2020). ‘It struck at the heart of who I thought I was’: A meta-synthesis of the qualitative literature examining the experiences of people with multiple sclerosis. Health Expectations, 23, 1007–27. https://doi.org/10.1111/hex.13093
Irvine, H., Davidson, C., Hoy, K., & Lowe-Strong, A. (2009). Psychosocial adjustment to multiple sclerosis: Exploration of identity redefinition. Disability and Rehabilitation, 31(8), 599–606. https://doi.org/10.1080/09638280802243286
Cowan, C. K., Pierson, J. M., & Leggat, S. G. (2020). Psychosocial aspects of the lived experience of multiple sclerosis: Personal perspectives. Disability and Rehabilitation, 42(3), 349–359. https://doi.org/10.1080/09638288.2018.1498545
Dennison, L., Smith, E. M., Bradbury, K., & Galea, I. (2016). How do people with multiple sclerosis experience prognostic uncertainty and prognosis communication a qualitative study. PloS one. https://doi.org/10.1371/journal.pone.0158982
Jones, J. B., Walsh, S., & Isaac, C. (2014). “Putting one foot in front of the other”: A qualitative study of emotional experiences and help-seeking in women with multiple sclerosis. Journal of Clinical Psychology in Medical Settings, 21(4), 356–373. https://doi.org/10.1007/s10880-014-9408-1
Soundy, A., Roskell, C., Elder, T., Collett, J., & Dawes, H. (2016). The psychological processes of adaptation and hope in patients with multiple sclerosis: A thematic synthesis. Open Journal of Therapy and Rehabilitation, 4(1), 22–47. https://doi.org/10.4236/ojtr.2016.41003
Boström, K., & Nilsagård, Y. (2016). A family matter—when a parent is diagnosed with multiple sclerosis. A qualitative study. Journal of Clinical Nursing, 25(7–8), 1053–1061. https://doi.org/10.1111/jocn.13156
Richardson, E. V., Barstow, E. A., & Motl, R. W. (2019). A narrative exploration of the evolving perception of exercise among people with multiple sclerosis. Qualitative Research in Sport, Exercise and Health, 11(1), 119–137. https://doi.org/10.1080/2159676X.2018.15909369
Van Reenen, E., Van Der Borg, W., Visse, M., Van Der Meide, H., & Visser, L. (2019). Fear, fight, familiarize: The experiences of people living with relapsing-remitting multiple sclerosis and taking oral medication. International Journal of Qualitative Studies on Health and Well-Being, 14(1), 1648946. https://doi.org/10.1080/17482631.2019.1648946
Ayobi, A., Marshall, P., Cox, A. L., & Chen, Y. (2017, May). Quantifying the body and caring for the mind: self-tracking in multiple sclerosis. In Proceedings of the 2017 CHI Conference on Human Factors in Computing Systems (pp. 6889–6901). https://doi.org/10.1145/3025453.3025869
Cheong, W. L., Mohan, D., Warren, N., & Reidpath, D. D. (2021). Living with a neglected neurological disease: A qualitative study of patients with multiple sclerosis in Malaysia. Disability and Rehabilitation, 43(15), 2184–2190. https://doi.org/10.1080/09638288.2019.1695000
Methley, A., Campbell, S., Cheraghi-Sohi, S., & Chew-Graham, C. (2017). Meeting the mental health needs of people with multiple sclerosis: A qualitative study of patients and professionals. Disability and Rehabilitation, 39(11), 1097–1105. https://doi.org/10.1080/09638288.2016.1180547
Pust, G. E., Untiedt, B., Randerath, J., Barabasch, A., Köpke, S., Rahn, A. C., Hansen, H., & Heesen, C. (2020). Exploring adherence to first-line and second-line immunotherapies in multiple sclerosis: An interview study. International Journal of MS Care, 22(5), 219–225. https://doi.org/10.7224/1537-2073.2018-068
van Capelle, A. D. C., van der Meide, H., Vosman, F. J., & Visser, L. H. (2017). A qualitative study assessing patient perspectives in the process of decision-making on disease modifying therapies (DMT’s) in multiple sclerosis (MS). PloS one. https://doi.org/10.1080/17482631.2019.1648946
Parton, C., Katz, T., & Ussher, J. M. (2019). ‘Normal’ and ‘failing’ mothers: Women’s constructions of maternal subjectivity while living with multiple sclerosis. Health, 23(5), 516–532. https://doi.org/10.1177/1363459317739442
Mozo-Dutton, L., Simpson, J., & Boot, J. (2012). MS and me: Exploring the impact of multiple sclerosis on perceptions of self. Disability and Rehabilitation, 34(14), 1208–1217. https://doi.org/10.3109/09638288.2011.638032
Bogosian, A., Morgan, M., & Moss-Morris, R. (2019). Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: A qualitative study. British Medical Journal Open, 9(3), e026421. https://doi.org/10.1136/bmjopen-2018-026421
Mortensen, G. L., & Rasmussen, P. V. (2017). The impact of quality of life on treatment preferences in multiple sclerosis patients. Patient Preference and Adherence, 11, 1789–1796. https://doi.org/10.2147/PPA.S142373
Edmonds, P., Vivat, B., Burman, R., Silber, E., & Higginson, I. J. (2007). ‘Fighting for everything’: Service experiences of people severely affected by multiple sclerosis. Multiple Sclerosis Journal, 13(5), 660–667. https://doi.org/10.1177/1352458506071789
Giovannetti, A. M., Pietrolongo, E., Giordano, A., Cimino, V., Campanella, A., Morone, G., Fusco, A., Lugaresi, A., Confalonieri, P., Patti, F., Grasso, M. G., Ponzio, M., Veronese, S., & Solari, A. (2016). Individualized quality of life of severely affected multiple sclerosis patients: Practicability and value in comparison with standard inventories. Quality of Life Research, 25(11), 2755–2763. https://doi.org/10.1007/s11136-016-1303-9
Bogosian, A., Morgan, M., Bishop, F. L., Day, F., & Moss-Morris, R. (2017). Adjustment modes in the trajectory of progressive multiple sclerosis: A qualitative study and conceptual model. Psychology & Health, 32(3), 343–360. https://doi.org/10.1080/08870446.2016.1268691
Borreani, C., Bianchi, E., Pietrolongo, E., Rossi, I., Cilia, S., Giuntoli, M., Giordano, A., Confalonieri, P., Lugaresi, A., Patti, F., Grasso, M. G., de Cavalho, L. L., Palmisano, L., Zaratin, P., Battaglia, M. A., Solari, A., on behalf of the PeNSAMI project. (2014). Unmet needs of people with severe multiple sclerosis and their carers: Qualitative findings for a home-based intervention. PloS One. https://doi.org/10.1371/journal.pone.0109679
Frost, J., Grose, J., & Britten, N. (2017). A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis. Health, 21(3), 316–336. https://doi.org/10.1177/1363459316674787
Ando, H., Cousins, R., & Young, C. (2014). Achieving saturation in thematic analysis: Development and refinement of a codebook. Comprehensive Psychology, 3, 03-CP. https://doi.org/10.2466/03.cp.3.4
Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough?: An experiment with data saturation and variability. Field Methods, 18, 59–62. https://doi.org/10.1177/1525822X05279903
Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis. An expanded disability status scale (EDSS). Neurology, 33(11), 1444–1452. https://doi.org/10.1212/WNL.33.11.1444
Mills, R. J., & Young, C. A. (2011). The relationship between fatigue and other clinical features of multiple sclerosis. Multiple Sclerosis Journal, 17, 604–612. https://doi.org/10.1177/1352458510392262
Braun, V., & Clarke, V. (2012). Thematic analysis. In H. Cooper (Ed.), APA handbook of research methods in psychology (Vol. 2, pp. 57–71). American Psychological Association. https://doi.org/10.1037/13620-004
Feredy, J., & Muir-Cochrane, E. (2006). Demonstrating rigor using thematic analysis: A hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods, 5(1), 80–92. https://doi.org/10.1177/160940690600500107
Watson, D., & Tellegen, A. (1985). Toward a consensual structure of mood. Psychological Bulletin, 98(2), 219–235. https://doi.org/10.1037/0033-2909.98.2.219
Creswell, J. W., & Cresswell, J. D. (2017). Research design: Qualitative, quantitative, and mixed methods approaches (5th ed.). Sage.
Eakin, K. M., & Mykhalovskiy, E. (2003). Reframing the evaluation of qualitative health research: Reflections on a review of appraisal guidelines in the health sciences. Journal of Evaluation in Clinical Practice, 9(2), 187–194. https://doi.org/10.1046/j.1365-2753.2003.00392.x
Burke, T., & Patching, J. (2019). Exploring life history methodology in chronic illness: A study in relapsing remitting multiple sclerosis. Australian Journal of Advanced Nursing, 36(4), 45–52.
Dehghani, A., Khoramkish, M., & Isfahani, S. S. (2019). Challenges in the daily living activities of patients with multiple sclerosis: A qualitative content analysis. International Journal of Community Based Nursing and Midwifery, 7(3), 201–210. https://doi.org/10.30476/IJCBNM.2019.44995
Duddy, M., Lee, M., Pearson, O., Nikfekr, E., Chaudhuri, A., Percival, F., Roberts, M., & Whitlock, C. (2014). The UK patient experience of relapse in multiple sclerosis treated with first disease modifying therapies. Multiple Sclerosis and Related Disorders, 3(4), 450–456. https://doi.org/10.1016/j.msard.2014.02.006
Miller, C. E., Karpinski, M., & Jezewski, M. A. (2012). Relapsing-remitting multiple sclerosis patients’ experience with natalizumab. International Journal of MS Care, 14(1), 39–44. https://doi.org/10.7224/1537-2073-14.1.39
Olsson, M., Lexell, J., & Söderberg, S. (2005). The meaning of fatigue for women with multiple sclerosis. Journal of Advanced Nursing, 49(1), 7–15. https://doi.org/10.1111/j.1365-2648.2004.03258.x
Ghafari, S., Fallahi-Khoshknab, M., Nourozi, K., & Mohammadi, E. (2015). Patients’ experiences of adapting to multiple sclerosis: A qualitative study. Contemporary Nurse, 50(1), 36–49. https://doi.org/10.1080/10376178.2015.1010252
Hutchinson, K., Roberts, C., & Daly, M. (2018). Identity, impairment and disablement: Exploring the social processes impacting identity change in adults living with acquired neurological impairments. Disability & Society, 33(2), 175–196. https://doi.org/10.1080/09687599.2017.1392931
Berglund, M. M. U. (2014). Learning turning points—in life with long-term illness—visualized with the help of the life-world philosophy. International Journal of Qualitative Studies on Health and Well-being, 9(1), 22842. https://doi.org/10.3402/qhw.v9.22842
Bambara, L. K., Turner, A. P., Williams, R. M., & Haselkorn, J. K. (2011). Perceived social support and depression among veterans with multiple sclerosis. Disability and Rehabilitation, 33(1), 1–8. https://doi.org/10.3109/09638288.2010.481026
Suh, Y., Weikert, M., Dlugonski, D., Sandroff, B., & Motl, R. W. (2012). Physical activity, social support, and depression: Possible independent and indirect associations in persons with multiple sclerosis. Psychology, Health & Medicine, 17(2), 196–206. https://doi.org/10.1080/13548506.2011.601747
Maguire, R., & Maguire, P. (2020). Caregiver burden in multiple sclerosis: Recent trends and future directions. Current Neurology and Neuroscience Reports, 20, 1–9. https://doi.org/10.1007/s11910-020-01043-5
Acknowledgements
We would like to thank all our participants for their time and contribution to this study. This research received support from the Neurological Disability Fund from the Walton Centre NHS Foundation Trust.
Funding
This research received funding from the Neurological Disability Fund from the Walton Centre NHS Foundation Trust.
Author information
Authors and Affiliations
Contributions
HA, RC and CAY contributed substantially to the design of the work. HA collected data and made initial analysis of the data. RC and CAY critically evaluated the interpretation of data. HA drafted the article and all authors revised for further intellectual content, and gave their final approval of the version to be published.
Corresponding author
Ethics declarations
Conflict of interest
The authors declare no potential conflicts of interest.
Data availability
The data supporting the findings of this study are available within the article.
Code availability
Not applicable.
Ethical approval
Ethical approval for this study was granted by the National Research Ethics Service (NRES) for the North West region of the United Kingdom (11/NW/0743).
Consent to participate
All participants provided their signed written informed consent.
Consent for publication
Not applicable.
Additional information
Publisher's Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Ando, H., Cousins, R. & Young, C.A. Understanding quality of life across different clinical subtypes of multiple sclerosis: a thematic analysis. Qual Life Res 31, 2035–2046 (2022). https://doi.org/10.1007/s11136-021-03041-7
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-021-03041-7