Explaining the facilitators of quality of life in patients with multiple sclerosis: a qualitative study

BMC Neurology - Tập 21 - Trang 1-10 - 2021
Atefeh Homayuni1, Sedigheh Abedini2, Zahra Hosseini3, Masoud Etemadifar4, Amin Ghanbarnejad5
1Health School, Hormozgan University of Medical Sciences, Bandar Abbas, Iran
2Social Determinants in Health Promotion Research Center, Hormozgan Health Institute, Hormozgan University of Medical Sciences, Bandar Abbas, Iran
3Tobacco and Health Research Center, Hormozgan University of Medical Sciences, Bandar Abbas, Iran
4Neurosciences Research Center, Isfahan University of Medical Sciences, Isfahan, Iran
5Department of Public Health, School of Health, Tobacco and Health Research Center, Hormozgan University of Medical Sciences, Bandar Abbas, Iran

Tóm tắt

In patients with multiple sclerosis (MS), the disease’s complications and manifestations affect a person’s ability to function normally and leads to further disruptions in their education, family life, job opportunities, and daily life activities, thereby reduce their quality of life. Different factors as facilitators or inhibitors affect the quality of life in patients with MS. This study aimed to explain the facilitators of quality of life in patients with MS. This research applied qualitative methodology, utilizing semi-structured interviews with individuals with MS and their family members/caregivers. Purposeful sampling was done among people who referred to Isfahan MS Association. Participants were selected with a maximum variation in terms of gender, age, education, occupation and marital status. Interviews were continued to reach data saturation. The gathered data were concurrently analyzed by the content analysis technique. MAXQDA software version 10 was used for data management. Saturation was reached after eighteen interviews. A total of three main categories and 8 sub-categories were extracted from the data. The identified facilitators were: personal facilitators (leisure time and coping strategies), interpersonal facilitators (exercise therapy, social support and social organizations) and needs and suggestions for improvement (family therapy, adopting urban architecture and facilities, and supportive systems). Based on these findings, in order to improve the quality of life in patients with MS, we should pay attention to factors such as leisure time, spirituality and positive thinking, exercise, social support and social organizations. Health professionals, the government, community and families could help to improve patients’ quality of life through adapting urban architecture, holding family therapy sessions and providing supportive systems.

Tài liệu tham khảo

Dutta R, Trapp BD. Mechanisms of neuronal dysfunction and degeneration in multiple sclerosis. Prog Neurobiol. 2011;93(1):1–12. https://doi.org/10.1016/j.pneurobio.2010.09.005. Harbo HF, Gold R, Tintoré M. Sex and gender issues in multiple sclerosis. Ther Adv Neurol Disord. 2013;6(4):237–48. https://doi.org/10.1177/1756285613488434. Huang WJ, Chen WW, Zhang X. Multiple sclerosis: pathology, diagnosis and treatments. Exp Ther Med. 2017;13(6):3163–6. https://doi.org/10.3892/etm.2017.4410. Azami M, YektaKooshali MH, Shohani M, Khorshidi A, Mahmudi L. Epidemiology of multiple sclerosis in Iran: a systematic review and meta-analysis. PLoS One. 2019;14(4):e0214738. https://doi.org/10.1371/journal.pone.0214738. Yamout B, Issa Z, Herlopian A, El Bejjani M, Khalifa A, Ghadieh A, et al. Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis. Eur J Neurol. 2013;20(5):756–64. https://doi.org/10.1111/ene.12046. Pittock SJ, Mayr WT, McClelland RL, Jorgensen NW, Weigand SD, Noseworthy JH, et al. Quality of life is favorable for most patients with multiple sclerosis: a population-based cohort study. Arch Neurol. 2004;61(5):679–86. https://doi.org/10.1001/archneur.61.5.679. Group W. The World Health Organization quality of life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41(10):1403–9. Strober L. Quality of life and psychological well-being in the early stages of multiple sclerosis (MS): importance of adopting a biopsychosocial model. Disabil Health J. 2018;11(4):555–61. https://doi.org/10.1016/j.dhjo.2018.05.003. Ochoa-Morales A, Hernández-Mojica T, Paz-Rodríguez F, Jara-Prado A, Trujillo-De Los Santos Z, Sanchez-Guzman M, et al. Quality of life in patients with multiple sclerosis and its association with depressive symptoms and physical disability. Mult Scler Relat Disord. 2019;36:101386. Campbell J, Rashid W, Cercignani M, Langdon D. Cognitive impairment among patients with multiple sclerosis: associations with employment and quality of life. Postgrad Med J. 2017;93(1097):143–7. https://doi.org/10.1136/postgradmedj-2016-134071. Chwastiak LA, Ehde DM. Psychiatric issues in multiple sclerosis. Psychiatr Clin N Am. 2007;30(4):803–17. https://doi.org/10.1016/j.psc.2007.07.003. Amato M, Ponziani G, Rossi F, Liedl C, Stefanile C, Rossi L. Quality of life in multiple sclerosis: the impact of depression, fatigue and disability. Mult Scler J. 2001;7(5):340–4. https://doi.org/10.1177/135245850100700511. Hanna M, Strober LB. Anxiety and depression in multiple sclerosis (MS): antecedents, consequences, and differential impact on well-being and quality of life. Mult Scler Relat Disord. 2020;44:102261. https://doi.org/10.1016/j.msard.2020.102261. Palinkas LA, Horwitz SM, Green CA, Wisdom JP, Duan N, Hoagwood K. Purposeful sampling for qualitative data collection and analysis in mixed method implementation research. Adm Policy Ment Health Ment Health Serv Res. 2015;42(5):533–44. https://doi.org/10.1007/s10488-013-0528-y. DiCicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40(4):314–21. https://doi.org/10.1111/j.1365-2929.2006.02418.x. Lincoln YS, Guba EG. Naturalistic inquiry. Thousand Oaks: Sage; 1985. Petajan JH, White AT. Recommendations for physical activity in patients with multiple sclerosis. Sports Med. 1999;27(3):179–91. https://doi.org/10.2165/00007256-199927030-00004. Hosseini SMS, Asgari A, Rassafiani M, Yazdani F, Mazdeh M. Leisure time activities of Iranian patients with multiple sclerosis: a qualitative study. Health Promot Perspect. 2016;6(1):47–53. https://doi.org/10.15171/hpp.2016.08. Passmore A, French D. Development and administration of a measure to assess adolescents’ participation in leisure activities. Adolescence. 2001;36(141):67–75. Hart S, Fonareva I, Merluzzi N, Mohr DC. Treatment for depression and its relationship to improvement in quality of life and psychological well-being in multiple sclerosis patients. Qual Life Res. 2005;14(3):695–703. https://doi.org/10.1007/s11136-004-1364-z. Giovagnoli AR, Paterlini C, Meneses RF, da Silva AM. Spirituality and quality of life in epilepsy and other chronic neurological disorders. Epilepsy Behav. 2019;93:94–101. https://doi.org/10.1016/j.yebeh.2019.01.035. Vizehfar F, Jaberi A. The relationship between religious beliefs and quality of life among patients with multiple sclerosis. J Relig Health. 2017;56(5):1826–36. https://doi.org/10.1007/s10943-017-0411-3. Panzini RG, Mosqueiro BP, Zimpel RR, Bandeira DR, Rocha NS, Fleck MP. Quality-of-life and spirituality. Int Rev Psychiatry. 2017;29(3):263–82. https://doi.org/10.1080/09540261.2017.1285553. McNulty K, Livneh H, Wilson LM. Perceived uncertainty, spiritual well-being, and psychosocial adaptation in individuals with multiple sclerosis. Rehabil Psychology. 2004;49(2):91–9. https://doi.org/10.1037/0090-5550.49.2.91. Saeedi H, Nasab S-HM, Zadeh AM, Ebrahimi HA. The effectiveness of positive psychology interventions with Islamic approach on quality of life in females with multiple sclerosis. Biomed Pharmacol J. 2015;8(2):965–70. https://doi.org/10.13005/bpj/848. Motl RW, Sandroff BM, Kwakkel G, Dalgas U, Feinstein A, Heesen C, et al. Exercise in patients with multiple sclerosis. Lancet Neurol. 2017;16(10):848–56. https://doi.org/10.1016/S1474-4422(17)30281-8. Dauwan M, Begemann MJ, Slot MI, Lee EH, Scheltens P, Sommer IE. Physical exercise improves quality of life, depressive symptoms, and cognition across chronic brain disorders: a transdiagnostic systematic review and meta-analysis of randomized controlled trials. J Neurol. 2019;266:1–25. Motl RW, Gosney J. Effect of exercise training on quality of life in multiple sclerosis: a meta-analysis. Mult Scler J. 2008;14(1):129–35. https://doi.org/10.1177/1352458507080464. Tarakci E, Yeldan I, Huseyinsinoglu BE, Zenginler Y, Eraksoy M. Group exercise training for balance, functional status, spasticity, fatigue and quality of life in multiple sclerosis: a randomized controlled trial. Clin Rehabil. 2013;27(9):813–22. https://doi.org/10.1177/0269215513481047. Turner AP, Kivlahan DR, Haselkorn JK. Exercise and quality of life among people with multiple sclerosis: looking beyond physical functioning to mental health and participation in life. Arch Phys Med Rehabil. 2009;90(3):420–8. https://doi.org/10.1016/j.apmr.2008.09.558. Demaneuf T, Aitken Z, Karahalios A, Leong TI, De Livera AM, Jelinek GA, et al. Effectiveness of exercise interventions for pain reduction in people with multiple sclerosis: a systematic review and meta-analysis of randomized controlled trials. Arch Phys Med Rehabil. 2019;100(1):128–39. https://doi.org/10.1016/j.apmr.2018.08.178. Campbell E, Coulter EH, Paul L. High intensity interval training for people with multiple sclerosis: a systematic review. Mult Scler Relat Disord. 2018;24:55–63. https://doi.org/10.1016/j.msard.2018.06.005. Pittion-Vouyovitch S, Debouverie M, Guillemin F, Vandenberghe N, Anxionnat R, Vespignani H. Fatigue in multiple sclerosis is related to disability, depression and quality of life. J Neurol Sci. 2006;243(1–2):39–45. https://doi.org/10.1016/j.jns.2005.11.025. Rosiak K, Zagożdżon P. Quality of life and social support in patients with multiple sclerosis. Psychiatr Pol. 2017;51(5):923–35. https://doi.org/10.12740/PP/64709. Costa DC, Sá MJ, Calheiros JM. Social support network and quality of life in multiple sclerosis patients. Arq Neuropsiquiatr. 2017;75(5):267–71. https://doi.org/10.1590/0004-282x20170036. Rommer P, Sühnel A, König N, Zettl UK. Coping with multiple sclerosis—the role of social support. Acta Neurol Scand. 2017;136(1):11–6. https://doi.org/10.1111/ane.12673. Costa DC, Sá MJ, Calheiros JM. The effect of social support on the quality of life of patients with multiple sclerosis. Arq Neuropsiquiatr. 2012;70(2):108–13. https://doi.org/10.1590/S0004-282X2012000200007. Schwartz C, Frohner R. Contribution of demographic, medical, and social support variables in predicting the mental health dimension of quality of life among people with multiple sclerosis. Health Social Work. 2005;30(3):203–12. https://doi.org/10.1093/hsw/30.3.203. Lee E-H, Chung BY, Park HB, Chun KH. Relationships of mood disturbance and social support to symptom experience in Korean women with breast cancer. J Pain Symptom Manag. 2004;27(5):425–33. https://doi.org/10.1016/j.jpainsymman.2003.10.007. Courtens A, Stevens F, Crebolder H, Philipsen H. Longitudinal study on quality of life and social support in cancer patients. Cancer Nurs. 1996;19(3):162–9. https://doi.org/10.1097/00002820-199606000-00002.