Advertisement
Research Article|Articles in Press, 104604

Psychosocial Difficulties Experienced by MS Patients in their Quality of Life: A Comparative Study of Two Countries

      Highlights

      • Governments, families, health workers, social workers and people with MS) should cooperate to improve social support mechanisms.
      • MS directly affects QOL as it follows an unpredictable process and causes loss of physical and social functions
      • Culture is a fundamental part of every society and is significant for the perception of the disease.
      • Receiving free psychological support at the time of diagnosis MS is a necessity.
      • Out-of-pocket health expenditures are extremely common among people with MS.

      Abstract

      Background

      MS is deeply impacted by social factors, such as access to health services, support from official and unofficial sources, and social welfare, which are also thought to contribute to the quality of life of MS patients. The purpose of this study is to examine the quality of life and to analyse the psychosocial challenges of MS patients in North Cyprus and Germany.

      Methods

      This study was designed with a cross-sectional and comparative research method. The personal information form and the WHO Quality of Life Scale Short Form were used. A total sixty-eight participants joined the study: 35 German patients and 33 Turkish Cypriot patients. Researchers collected the data by face-to-face interviews between December 2021 and March 2022. The majority of MS patients were females average age was 49.48 years old.

      Results

      In general, the two populations had comparable total sub-dimension scores of quality of life. However, only environment sub-dimension score has significant difference between Germany (x̄ =70.04) and North Cyprus (x̄ =55.87). Perceived opportunities for accessing medication, physiotherapy, and psychological support, as well as the opportunity to receive psychological support after the time of diagnosis were considered greater in the German group compared to the Turkish Cypriot one.

      Conclusion

      Findings from this cross-sectional research demonstrate significant differences in services provided, particularly in the psychosocial domain, between those in Germany and those in Cyprus. Consequently, all parties in both countries (governments, families, health workers, social workers and people with MS) should cooperate to improve social support mechanisms. Moreover, it is needed better access to health services in Northern Cyprus.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Multiple Sclerosis and Related Disorders
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Abuduxike G
        • Aşut Ö
        • Vaizoğlu SA
        • Cali S.
        Health-seeking behaviors and its determinants: A facility-based cross-sectional study in the Turkish Republic of Northern Cyprus.
        Int J Health Policy Manag. 2020; 1 (6PMID: 32613792; PMCID: PMC7382910): 240-249https://doi.org/10.15171/ijhpm.2019.106
        • Alonso Y.
        The biopsychosocial model in medical research: the evolution of the health concept over the last two decades.
        Patient Education and Counseling. 2004; 53 (PMID: 15140464): 239-244https://doi.org/10.1016/s0738-3991(03)00146-0
        • Angermeyer MC
        • Kilian R
        • Matschinger H.
        WHOQOL-100 und WHOQOL-BREF.
        in: Handbuch für die deutsche Version der WHO Instrumente zur Erfassung von Lebensqualität. Göttingen: Hogrefe. 2000
        • Ateş CR.
        Engelli politikalarında sivil toplum kuruluşlarının rolü: KKTC örneği. [The role of non-governmental organizations in the policies of disabled: Example of Turkish Republic of North Cyprus (TRNC)].
        Ankara Haci Bayram Veli Üniversitesi, 2019 (Dissertation)
      1. Baflı, M, Ertürk, ÖN, 2022. Only 178 out of 338 employees are actively insured. https://www.kibrispostasi.com/c35-KIBRIS_HABERLERI/n432698-15-gunluk-rapor-aciklandi-62-kacak-isci-98-yatirimsiz-sigortali (accessed 13 January 2023).

        • Bass AD
        • Van Wijmeersch B
        • Mayer L
        • M ̈aurer M
        • Boster A
        • Mandel M
        • Singer B.
        Effect of multiple sclerosis on daily activities, emotional well-being, and relationships: The global vs ms survey.
        Int J MS Care. 2020; 22: 158-164https://doi.org/10.7224/1537-2073.2018-087
        • Benito-Leon J
        • Morales JM
        • Rivera-Navarro J
        • Mitchell A
        A review about the impact of multiple sclerosis on health-related quality of life.
        Disability Rehabilitation. 2003; 25: 1291-1303
        • Berrigan LI
        • Fisk J.
        • Patten SB
        • Tremlett H
        • Wolfson C
        • Warren S
        • Fiest KM
        • McKay KA
        • Marrie RA
        CIHR Team in the Epidemiology and impact of comorbidity on multiple sclerosis (ECoMS). Health-related quality of life in multiple sclerosis: Direct and indirect effects of comorbidity.
        Neurology. 2016; 12 (15): 1417-1424https://doi.org/10.1212/WNL.0000000000002564
        • Brown S.
        • Hole AR.
        • Kilic D.
        Out-of-pocket health care expenditure in Turkey: Analysis of the 2003–2008 Household Budget Surveys.
        Economic Modelling. 2014; 41: 211-218
        • Butler MA
        • Bennett TL
        In cof a conceptualization of multiple sclerosis: a historical perspective.
        Neuropsychology Review. 2003; 13: 93-112
        • Capuano R
        • Altieri M.
        • Bisecco A
        • d'Ambrosio A
        • Docimo R
        • Buonanno D
        • Matrone F
        • Giuliano F
        • Tedeschi G
        • Santangelo G
        • Gallo A.
        Psychological consequences of COVID-19 pandemic in Italian MS patients: signs of resilience?.
        Journal of Neurology. 2021; 268: 743-750https://doi.org/10.1007/s00415-020-10099-9
      2. Caraballo, C, Massey, D, Mahajan, S, Lu, Y, Annapureddy, AR, Roy, B, … & Krumholz, H. M., 2020. Racial and ethnic disparities in access to health care among adults in the United States: A 20-year national health interview survey analysis, 1999–2018. https://doi.org/10.1101/2020.10.30.20223420

        • Carroll S
        • Chalder T
        • Hemingway C
        • Heyman I
        • Moss-Morris R
        Understanding fatigue in paediatric multiple sclerosis: a systematic review of clinical and psychosocial factors.
        Developmental Medicine&Child Neurology. 2016; 58: 229-239https://doi.org/10.1111/dmcn.12964
        • Chwastiak LA
        • Ehde DM
        Psychiatric issues in multiple sclerosis.
        The psychiatric clinics of North America. 2007; 30: 803-817https://doi.org/10.1016/j.psc.2007.07.003
        • Counsell A
        • Hadjistavropoulos HD
        • Kehler MD
        • Asmundson GJG
        Posttraumatic stress disorder symptoms in individuals with multiple sclerosis.
        Psychological Trauma: Theory, Research Practice, and Policy. 2013; 5: 448-452https://doi.org/10.1037/a0029338
        • Davis BE
        • Lakin L
        • Binns CC.
        • et al.
        Patient and provider insights into the impact of multiple sclerosis on mental health: A narrative review.
        Neurol Ther. 2021; 10: 99-119https://doi.org/10.1007/s40120-021-00240-9
        • Dorstyn DS
        • Roberts RM
        • Murphy G
        • Haub R.
        Employment and multiple sclerosis: A meta-analytic review of psychological correlates.
        Journal of Health Psychology. 2017; : 1-14https://doi.org/10.1177/1359105317691587
        • Engel GL.
        The clinical application of the biopsychosocial model.
        The Journal of Medicine & Philosophy. 1981; 6: 101-124https://doi.org/10.1093/jmp/6.2.101
        • Eser S
        • Saatli G
        • Eser E
        • Baydur H
        • Fidaner C.
        The reliability and validity of the Turkish Version of the world health organization quality of life instrument-older adults module (WHOQOL-Old) Turk.
        J. Psychiatry. 2010; 21: 37-48
        • Gil-González I
        • Martín-Rodríguez A
        • Conrad R.
        • Pérez-San-Gregorio MÁ
        Quality of life in adults with multiple sclerosis: a systematic review.
        BMJ open. 2020; 1011e041249
        • Grima DT
        • Torrance GW
        • Francis G
        Cost and health related quality of life consequences of multiple sclerosis.
        Mult Scler. 2000; 6: 91-98
        • Harrison AM
        • McCracken LM
        • Bogosian A
        • Moss-Morris R
        Towards a better understanding of MS pain: A systematic review of potentially modifiable psychosocial factors.
        Journal of Psychosomatic Research. 2015; 78: 12-24
        • Lassmann H.
        Multiple sclerosis pathology.
        Cold Spring Harbor perspectives in medicine. 2018; 8a028936https://doi.org/10.1101/cshperspect.a028936
        • Leray E
        • Moreau T
        • Fromont A.
        • Edan G.
        Epidemiology of Multiple Sclerosis.
        Rev Neurol (Paris). 2016; 172: 3-13https://doi.org/10.1016/j.neurol.2015.10.006
        • McCabe MP
        • McKern S
        Quality of life and multiple sclerosis: Comparison between people with multiple sclerosis and people from the general population.
        Journal of Clinical Psychology in Medical Settings. 2002; 9: 287-295https://doi.org/10.1023/A:1020734901150
        • Morgan RO
        • Teal CR
        • Hasche JC
        • Petersen LA
        • Byrene MM
        • Paterniti DA
        • Virnig BA
        Does poorer familiarity with medicare translate into worse access to health care?.
        Journal of the American Geriatrics Society. 2008; 56: 2053-2060https://doi.org/10.1111/j.1532-5415.2008.01993.x
        • Morris-Bankole H.
        • Ho AK.
        Uncovering patterns of real-world psychological support seeking and the patient experience in multiple sclerosis.
        Multiple Sclerosis and Related Disorders. 2022; 59https://doi.org/10.1016/j.msard.2022.103666
        • Motl RW
        • McAuley E
        • Snook E
        • Gliottoni RC
        Physical activity and quality of life in multiple sclerosis: Intermediary roles of disability, fatigue, mood, pain, self-efficacy and social support.
        Psychology, Health and Medicine. 2009; 14: 111-124
        • Muhtaroğlu M.
        Multipl sklerozlu hastalarda solunum kas kuvvetinin solunum fonksiyonlarının ve yaşam kalitesinin değerlendirilmesi [Assesment of respiration-muscle strength, respiration functions and quality of life among people with MS].
        Eastern Mediterranean University, 2016 (Dissertation)
        • Nabavi SM.
        Insurance covering and service support of MS patients in Iran.
        in: International MS congress, Berlin. 2002
        • Phillips L
        • Stuifbergen A.
        The relevance of depressive symptoms and social support to disability in women with multiple sclerosis or fibromyalgia.
        International Journal of Rehabilitation Research. 2010; 33: 142-150
        • Rahmioglu N
        • Naci H
        • Cylus J.
        Improving health care services in Northern Cyprus: a call for research and action.
        The European Journal of Public Health. 2012; 22: 754-755
        • Rieckmann P
        • Centonze D
        • Elovaara I
        • Giovannoni G
        • Havrdová E
        • Kesselring J
        • Ben-Amor AF
        Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st century steering group.
        Multiple sclerosis and related disorders. 2018; 19: 153-160
        • Sanıl M.
        • Eminer F.
        An integrative model of patients’ perceived value of healthcare service quality in North Cyprus.
        Arch Public Health. 2021; 79: 227https://doi.org/10.1186/s13690-021-00738-6
        • Stuifbergen A.
        Health promoting behaviors and quality of life among individuals with multiple sclerosis.
        Scholarly Inquiry for Nursing Practice. 1995; 9: 31-50
        • Strober LB.
        Quality of life and psychological well-being in the early stages of multiple sclerosis (MS): Importance of adopting a biopsychosocial model.
        Disability Health Journal. 2018; 11: 555-561https://doi.org/10.1016/j.dhjo.2018.05.003
        • Sylvestro HM.
        • Mobley K
        • Wester K.
        Biopsychosocial models in cancer care: application of a counseling model of wellness.
        Journal of Counselor Leadership and Advocacy. 2021; 8: 116-129https://doi.org/10.1080/2326716X.2021.1946665
        • The WHOQOL Group
        The World Health Organisation Quality of Life assessment (WHOQOL): position paper from the World Health Organisation.
        Soc. Sci. Med. 1995; 41: 1403
        • Thornton E
        • Tedman S
        • Rigby S
        • Bashforth H
        • Young C
        Worries and concerns of patients with multiple sclerosis: Development of an assesment scale.
        Multiple Sclerosis. 2006; 12: 196-203
        • Tipirneni R
        • Politi MC
        • Kullgren JC
        • Kieffer EC
        • Goold SD
        • Scherer AM
        Association between health insurance literacy and avoidance of health care services owing to cost.
        JAMA Network Open. 2018; 1: 1-8https://doi.org/10.1001/jamanetworkopen.2018.4796
        • Wallace C.
        • Pichler F.
        More participation, happier society? A comparative study of civil society and the quality of life.
        Social indicators research. 2009; 93: 255-274
      3. World Health Organization. 1996. Division of mental health. WHOQOL-BREF introduction, administration, scoring and generic version of the assessment: field trial version, December

        • Ysrraelit MC
        • Fiol MP
        • Gaitan MI
        • Correale J.
        Quality of life assessment in multiple sclerosis: Different perception between patients and neurologists.
        Frontiers in Neurology. 2018; 8: 1-6