Experiences of Fatigue, Emotional Distress, and Daily Functioning Among Patients With Multiple Sclerosis: A Qualitative Study of Health-Related Quality of Life
Keywords:
Multiple sclerosis, fatigue, emotional distress, daily functioning, health-related quality of life, qualitative study, lived experienceAbstract
Objective: This study aimed to explore the lived experiences of fatigue, emotional distress, and daily functioning among patients with multiple sclerosis in Canada and to understand how these experiences shape their health-related quality of life.
Methods and Materials: This qualitative phenomenological study was conducted among 26 adult patients with a confirmed diagnosis of multiple sclerosis who were recruited from neurology clinics, community-based multiple sclerosis organizations, and patient support groups in Toronto, Ontario, Canada. Participants were selected through purposeful sampling with maximum variation in age, gender, disease duration, disease type, occupational status, and functional limitation. Data were collected using a demographic and clinical information form, semi-structured individual interviews, audio recordings, and researcher field notes. Interviews focused on patients’ experiences of fatigue, emotional distress, functional limitations, coping strategies, social participation, family and occupational roles, and perceived changes in health-related quality of life. Data collection continued until thematic saturation was achieved. Interviews were transcribed verbatim and analyzed using inductive thematic analysis. Credibility and trustworthiness were strengthened through peer debriefing, reflexive memo writing, comparison of coding decisions, an audit trail, and participant feedback on interpreted themes.
Findings: Thematic analysis revealed six major themes: fatigue as a dominant and unpredictable burden, emotional distress and psychological vulnerability, disruption of daily functioning and role performance, coping and reconstruction of normal life, social understanding and stigma, and health-related quality of life as a balance between limitation and control. Fatigue emerged as the most pervasive experience and affected physical activity, cognitive functioning, emotional regulation, employment, and social participation. Emotional distress was mainly associated with anxiety about progression, grief for the previous self, fear of dependency, irritability, and uncertainty about the future. Daily functioning was disrupted through limitations in work, household tasks, mobility, family roles, and social engagement. Protective factors included pacing, acceptance, social support, accessibility, and preservation of meaningful activities.
Conclusion: Health-related quality of life among patients with multiple sclerosis is shaped by the dynamic interaction of fatigue, emotional distress, functional limitation, coping capacity, and social context. Patient-centered care should address both visible and invisible symptoms and support autonomy, emotional balance, meaningful participation, and daily functioning.
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Al‐Gamal, E., Hyarat, S. Y., Jaried, L. A., Rama, E. D., Ahmad, M., & Long, T. (2025). Fatigue and Health-Related Quality of Life in Patients With Multiple Sclerosis. Journal of Research in Nursing, 30(2), 141-154. https://doi.org/10.1177/17449871241290435
Chan, F., Iwanaga, K., Wu, J.-R., Cherry, A., & Bezyak, J. (2025). Psychometric Validation of the Patient-Reported Outcomes Measurement Information System Global Health Scale for People With Multiple Sclerosis. Rehabilitation Psychology, 70(2), 194-202. https://doi.org/10.1037/rep0000574
Clark, N., Johnson, M., Rangan, A., Kottam, L., & Swainston, K. (2023). The Biopsychosocial Impact of Hypermobility Spectrum Disorders in Adults: A Scoping Review. Rheumatology International, 43(6), 985-1014. https://doi.org/10.1007/s00296-023-05298-2
Cooper, E. C., Schindler, M. K., Bar‐Or, A., Brandstadter, R., Calkins, M. E., Gur, R. C., Jacobs, D., Markowitz, C., Moore, T. M., Naydovich, L. R., Perrone, C., Ruparel, K., Spangler, B., Troyan, S., Shinohara, R. T., Satterthwaite, T. D., & Baller, E. B. (2025). Investigating Mood and Cognition in People With Multiple Sclerosis: A Prospective Cross-Sectional Study Protocol. BMJ open, 15(5), e094733. https://doi.org/10.1136/bmjopen-2024-094733
Cuerda‐Ballester, M., Bustos, A., Sancho-Cantus, D., Martínez‐Rubio, D., Privado, J., Alarcón-Jiménez, J., Villarón-Casales, C., Bernardo, N., Navarro-Illana, E., & José Enrique de la Rubia, O. (2024). Predictive Model of Anxiety and Depression Perception in Multiple Sclerosis Patients: Possible Implications for Clinical Treatment. Bioengineering, 11(1), 100. https://doi.org/10.3390/bioengineering11010100
Eroğlu, F. E., Orhan, G., Arlı, B., ÇEtİN, H. G. H., & Şanlıer, N. (2025). Evaluation of the Relationship Between Dietary Inflammatory Index, MIND Diet Score, Some Serum Parameters, and Depression Nutritional Status in Adult Women Diagnosed With Multiple Sclerosis. Food Science & Nutrition, 13(8). https://doi.org/10.1002/fsn3.70722
Fauver, M., Clark, E. M., & Schwartz, C. E. (2024). A New Framework for Understanding Stress and Disease: The Developmental Model of Stress as Applied to Multiple Sclerosis. Frontiers in Integrative Neuroscience, 18. https://doi.org/10.3389/fnint.2024.1365672
Formica, C., Latella, D., Bonanno, L., Facciale, A. L., Paladina, G., Leo, A., Pergolizzi, L., Fonti, B., Quartarone, A., Cellini, R., & Calabrò, R. S. (2025). The Role of VibraPlus on Fatigue in Multiple Sclerosis Patients: A Randomized Controlled Trial. Journal of clinical medicine, 14(11), 3990. https://doi.org/10.3390/jcm14113990
Fournier, V., Duprez, C., Grynberg, D., Antoine, P., & Lamore, K. (2023). Are Digital Health Interventions Valuable to Support Patients With Cancer and Caregivers? An Umbrella Review of Web‐based and App‐based Supportive Care Interventions. Cancer Medicine, 12(23), 21436-21451. https://doi.org/10.1002/cam4.6695
García, R. O., Sánchez, A. I., Prados, G., Benghazi, K., Garrido, J. L. G., & Miró, E. (2021). Exploring the Clinical Usefulness of an Electronic Diary in Fibromyalgia Patients: A Pilot Study. Revista de Psicopatologia y Psicologia Clinica, 26(3), 181-190. https://doi.org/10.5944/rppc.28630
Giménez‐Llort, L., González, J. J. M., & Maurel, S. (2021). Secondary Impacts of COVID-19 Pandemic in Fatigue, Self-Compassion, Physical and Mental Health of People With Multiple Sclerosis and Caregivers: The Teruel Study. Brain Sciences, 11(9), 1233. https://doi.org/10.3390/brainsci11091233
Ha, D., Jacob, R. A., & Bade, B. C. (2025). Survivorship Challenges and Supportive Care in Lung Cancer. Seminars in Respiratory and Critical Care Medicine, 46(05), 436-451. https://doi.org/10.1055/a-2649-9311
Horan, M. R., Sim, J.-A., Krull, K. R., Baker, J. N., & Huang, I. C. (2022). A Review of Patient-Reported Outcome Measures in Childhood Cancer. Children, 9(10), 1497. https://doi.org/10.3390/children9101497
Hoving, M. P., Jongen, P. J., Silvia, M. A. A. E., Edens, M. A., & Zeinstra, E. (2022). MSmonitor-plus Program and Video Calling Care (MPVC) for Multidisciplinary Care and Self-Management in Multiple Sclerosis: Study Protocol of a Single-Center Randomized, Parallel-Group, Open Label, Non-Inferiority Trial. BMC Neurology, 22(1). https://doi.org/10.1186/s12883-022-02948-z
Infortuna, C., Buccafusca, M., Graceffa, A., Maiorana, E., Wang, R., Ganesh, S., Yedidia, O., Bruno, A., Iannuzzo, F., Thomas, F. P., & Battaglia, F. (2025). Exploring the Relationship Between Temperament Traits, Psychological Symptoms, and Functional Disability Assessed With the WHODAS 2.0 in Persons With Multiple Sclerosis. Frontiers in Neurology, 16. https://doi.org/10.3389/fneur.2025.1561995
Klein, I. L., Verhaak, C. M., Smeıtınk, J., Laat, P. d., Janssen, M. C. H., & Custers, J. A. E. (2022). Identifying Trajectories of Fatigue in Patients With Primary Mitochondrial Disease Due to the m.3243A > G Variant. Journal of Inherited Metabolic Disease, 45(6), 1130-1142. https://doi.org/10.1002/jimd.12546
Kraemer, K. M., Jain, F. A., Mehta, D. H., & Fricchione, G. L. (2022). Meditative and Mindfulness-Focused Interventions in Neurology: Principles, Science, and Patient Selection. Seminars in Neurology, 42(02), 123-135. https://doi.org/10.1055/s-0042-1742287
Kunkle, R., Xu, H., Thomas, L., Webb, L., O’Brien, E. C., & Geary, C. (2024). Nursing Home Workers' Experience During the COVID-19 Pandemic. Research in Gerontological Nursing, 17(3), 131-140. https://doi.org/10.3928/19404921-20240423-02
Maristany, A., Brianna, C., Murray, C., Subramaniam, A., & Oldak, S. E. (2024). Psychiatric Manifestations of Neurological Diseases: A Narrative Review. Cureus. https://doi.org/10.7759/cureus.64152
Martín, C. S., Beltrán, R., Pardo-Garrido, L., Soto, M., Matus-Rosas, P., Quezada-Scholz, V. E., Pino, P., Osma, J., & Guevara, C. (2025). Evaluating Emotional Regulation and Comorbidities in Multiple Sclerosis: Insights From a Unified Protocol Treatment Case Study. Clinical Case Studies, 24(3), 175-199. https://doi.org/10.1177/15346501251324920
McGarragle, K. (2024). Couples Coping With Multiple Sclerosis: Does Dyadic Coping Congruence Matter? https://doi.org/10.32920/26052907
Montesano, C., Liberali, G., Azzali, G., Buzzachera, C. F., Angilletta, S., Alessandria, M., Guidetti, L., & Giorgio, A. D. (2025). Reducing Stigma, Enhancing Psychological Well-Being and Identity in Multiple Sclerosis: A Narrative Review of Current Practices and Future Directions. Healthcare, 13(11), 1291. https://doi.org/10.3390/healthcare13111291
Motolese, F., Stelitano, D., Lanzone, J., Albergo, G., Cruciani, A., Masciulli, C., Musumeci, G., Pilato, F., Rossi, M., Ribolsi, M., Lazzaro, V. D., & Capone, F. (2023). Feasibility and Efficacy of an at-Home, Technology-Supported Mindfulness Program in People With Multiple Sclerosis: A Proof-of-Principle Study. https://doi.org/10.22541/au.168416824.49652226/v1
Özbek, M., Arıkanoğlu, A., & Aluçlu, M. U. (2025). Depression, Anxiety, and MSQOL-54 Outcomes in RRMS Patients Receiving Fingolimod or Cladribine: A Cross-Sectional Comparative Study. Medicina, 61(8), 1409. https://doi.org/10.3390/medicina61081409
Özen, Ş., Karataş, T., & Polat, Ü. (2021). Perceived Social Support, Mental Health, and Marital Satisfaction in Multiple Sclerosis Patients. Perspectives in psychiatric care, 57(4), 1862-1875. https://doi.org/10.1111/ppc.12760
Parast, O. D., Rasouli, N., & Ghotb, S. I. (2024). Comparison of the Effect of Schema Therapy and Mindfulness Technique on Existential Anxiety in Individuals With Multiple Sclerosis. Jayps, 5(6), 145-155. https://doi.org/10.61838/kman.jayps.5.6.16
Roshdi, G., Dehkordi, S. N., & Dadgoo, M. (2020). Experience of Iranian Women With Multiple Sclerosis About Urinary Dysfunctions Consequences: A Qualitative Study. Function and Disability Journal, 3(1), 45-52. https://doi.org/10.32598/fdj.3.8
Schenk, A., Popa, C. O., Cojocaru, C., Marian, Ș., Maier, S., Băjenaru, O. L., & Bălașa, R. (2024). An Online Single-Session Cognitive Behavioral Therapy for Depression and Anxiety Associated With Multiple Sclerosis—Pilot Study. Behavioral Sciences, 14(7), 620. https://doi.org/10.3390/bs14070620
Simieli, L., Santinelli, F. B., Costa, E. C., Kuroda, M. H., Oliveira, L. R., Penedo, T., Pilon, J., Silveira, A. P. B., Assis, I. S. A., Tardelli, E., Okamoto, E., & Barbieri, F. A. (2022). Perception of COVID-19 Pandemic by Brazilian People With Parkinson’s Disease and Multiple Sclerosis. Frontiers in psychology, 13. https://doi.org/10.3389/fpsyg.2022.718313
Simpson, R., Posa, S., Bruno, T., Simpson, S., Wasilewski, M. B., Robinson, L. R., Munce, S., Bayley, M., & Feinstein, A. (2022). Conceptualization, Use, and Outcomes Associated With Compassion in the Care of People With Multiple Sclerosis: A Scoping Review. Journal of Neurology, 270(3), 1300-1322. https://doi.org/10.1007/s00415-022-11497-x
Tarantino, S., Checchi, M. P., Papetti, L., Monte, G., Ferilli, M. A. N., & Valeriani, M. (2024). Parental Experiences in Pediatric Multiple Sclerosis: Insights From Quantitative Research. Children, 11(1), 71. https://doi.org/10.3390/children11010071
Topcu, G., Griffiths, H. P., Bale, C., Trigg, E., Clarke, S., Potter, K.-J., Mhizha-Murira, J. R., Drummond, A., Evangelou, N., Fitzsimmons, D., & Nair, R. d. (2020). Psychosocial Adjustment to Multiple Sclerosis Diagnosis: A Meta-Review of Systematic Reviews. Clinical psychology review, 82, 101923. https://doi.org/10.1016/j.cpr.2020.101923
Văcăraș, V., Văcăraș, V., Nistor, C., Văcăraș, D., Opre, A., Blaga, P., & Mureșanu, D. F. (2020). The Influence of Depression and Anxiety on Neurological Disability in Multiple Sclerosis Patients. Behavioural neurology, 2020, 1-8. https://doi.org/10.1155/2020/6738645
Vissicchio, N. A., Altaras, C., Seng, E. K., Swencionis, C., Picone, M., & Foley, F. W. (2023). Illness Intrusiveness: A Key Part of the Cognition-Mood Link in Multiple Sclerosis. Rehabilitation Psychology, 68(1), 43-52. https://doi.org/10.1037/rep0000467
Worikat, N. A., Zanotto, A., Sosnoff, J. J., & Zanotto, T. (2024). Mental Health and Frailty in People With Multiple Sclerosis: Unraveling a Complex Relationship. Frontiers in psychology, 15. https://doi.org/10.3389/fpsyg.2024.1387618
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Copyright (c) 2025 Andrea Salvatierra (Author); Aaron Thompson
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