Understanding Palliative Care Needs in Multiple Sclerosis: Insights from a Qualitative Descriptive Study
Abstract
Background: Given the variability in the provision of palliative care for patients with multiple sclerosis (MS) across diverse communities and cultural contexts, and considering the paramount importance of a patient‑centered approach in needs assessment, this study aimed to identify the palliative care needs of individuals with MS. Materials and Methods: This qualitative descriptive study employed a directed content analysis approach on 2024. Data were collected through semistructured and in‑depth 30‑minute interviews with 14 patients diagnosed with MS in southern Iran. The interviews continued until data saturation was achieved. Concurrently with data collection, analysis was performed using the Elo‑Kyngas method and MAXQDA 2022. The Guba and Lincoln criteria were utilized to ensure the validity and reliability of the data. Results: The analysis identified eight primary categories of needs that align with the National Consensus Project framework: structure and processes of care, physical, psychological and psychiatric, social, cultural, ethical and legal, spiritual, religious, and existential aspects, and end‑of‑life care. Conclusions: A thorough understanding of the palliative care needs of patients with MS can improve the responsiveness of the treatment team and empower caregivers to address these needs more effectively. Consequently, this leads to the delivery of more comprehensive palliative care services for these patients. While the palliative care needs of patients can be considered a multidimensional concept, determining the perceptions of family caregivers and healthcare providers regarding these needs is recommended to develop a more comprehensive approach in future research.
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Dobson R, Giovannoni G. Multiple sclerosis – A review. Eur J Neurol 2019;26:27-40.
Walton C, King R, Rechtman L, Kaye W, Leray E, Marrie RA, et al. Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS. Multi Scler J 2020;26:1816-21.
Dehghani R, Kazemi Moghaddam V. Investigation of the possible causes of the increased prevalence of multiple sclerosis in Iran: A review. Pars J Med Sci 2022;13:17-25.
Etemadifar M, Maghzi A-H. Sharp increase in the incidence and prevalence of multiple sclerosis in Isfahan, Iran. Mult Scler J 2011;17:1022-7.
Azami M, YektaKooshali MH, Shohani M, Khorshidi A, Mahmudi L. Correction: Epidemiology of multiple sclerosis in Iran: A systematic review and meta-analysis. PLoS One 2019;14:e0219466.
Lublin FD, Häring DA, Ganjgahi H, Ocampo A, Hatami F, Čuklina J, et al. How patients with multiple sclerosis acquire disability. Brain 2022;145:3147-61.
Kuhlmann T, Moccia M, Coetzee T, Cohen JA, Correale J, Graves J, et al. Multiple sclerosis progression: Time for a new mechanism-driven framework. Lancet Neurol 2023;22:78-88.
Attfield KE, Jensen LT, Kaufmann M, Friese MA, Fugger L. The immunology of multiple sclerosis. Nat Rev Immunol 2022;22:734-50.
Solomon AJ, Marrie RA, Viswanathan S, Correale J, Magyari M, Robertson NP, et al. Global barriers to the diagnosis of multiple sclerosis: Data from the Multiple Sclerosis International Federation Atlas of MS. Neurology 2023;101:e624-35.
Shah A, Panchal V, Patel K, Alimohamed Z, Kaka N, Sethi Y, et al. Pathogenesis and management of multiple sclerosis revisited. Dis Mon 2023;69:101497.
Solari A, Giordano A, Sastre-Garriga J, Köpke S, Rahn AC, Kleiter I, et al. EAN guideline on palliative care of people with severe, progressive multiple sclerosis. J Palliat Med 2020;23:1426-43.
Stephen C, Claire M, Ernesto J, Richard H, James C, Barbara H. Global Atlas of Palliative Care. London, UK: World Health Organization (WHO); 2020. p. 3-34.
Hallenbeck JL, Hallenbeck J. Palliative Care Perspectives. Oxford University Press; 2022.
Cimino V, Chisari CG, Toscano S, Patti F. Palliative care in multiple sclerosis. Handb Clin Neurol 2023;191:129-38.
Wilder CA. Palliative care for patients with multiple sclerosis: Recommendations emerging from a case study. J Hosp Palliat Nurs 2023;25:12-7.
Gofton T, Chum M, Schulz V, Gofton B, Sarpal A, Watling C. Challenges facing palliative neurology practice: A qualitative analysis. J Neurol Sci 2018;385:225-31.
Encarnacao P, Oliveira CC, Martins T. Suffering, a concept present in non-cancer patients: Multiple sclerosis patients. Int J Caring Sci 2018;11:572-8.
Shalev A, Phongtankuel V, Kozlov E, Shen MJ, Adelman RD, Reid M. Awareness and misperceptions of hospice and palliative care: A population-based survey study. Am J Hosp Palliat Med 2018;35:431-9.
Dadsetan F, Shahrbabaki PM, Mirzai M, Nouhi E. Palliative care needs of patients with multiple sclerosis in southeast Iran. BMC Palliat Care 2021;20:1-7.
Aranđelović B, Simić S, Simin D, Mikić M, Dolinaj V, Bogdanović Vasić S, et al. Determining the need for palliative care patients with multiple sclerosis—a cross-sectional study. Healthcare (Basel ) 2024;12:2024.
Ferrell BR, Twaddle ML, Melnick A, Meier DE. National consensus project clinical practice guidelines for quality palliative care guidelines. J Palliat Med 2018;21:1684-9.
Aacharya H. Content analysis. EPRA IJRD 2022;7:177-80.
Sharifzadeh R. A science and technology studies challenge to trustworthiness criteria: Toward a more naturalistic approach. Philos Soc Sci 2024;54:490-515.
Bonnechere B, Rintala A, Spooren A, Lamers I, Feys P. Is mHealth a useful tool for self-assessment and rehabilitation of people with multiple sclerosis? A systematic review. Brain Sci 2021;11:1187.
Just J, Schmitz M-T, Grabenhorst U, Joist T, Horn K, Weckbecker K. Specialized outpatient palliative care: Clinical course and predictors for living at home until death. Dtsch Arztebl Int 2022;119:327-32.
Zarea K, Rassouli M, Hazrati M, Molavynejad S, Beiranvand S. Comparison of the hospice palliative care delivery systems in Iran and selected countries. Int J Cancer Manag 2020;13: e101635.
Strupp J, Voltz R, Golla H. Opening locked doors: Integrating a palliative care approach into the management of patients with severe multiple sclerosis. Mult Scler J 2016;22:13-8.
Mikula P, Timkova V, Linkova M, Vitkova M, Szilasiova J, Nagyova I. Fatigue and suicidal ideation in people with multiple sclerosis: The role of social support. Front Psychol 2020;11:504.
McGinley MP, Goldschmidt CH, Rae-Grant AD. Diagnosis and treatment of multiple sclerosis: A review. JAMA 2021;325:765-79.
Lakin L, Davis BE, Binns CC, Currie KM, Rensel MR. Comprehensive approach to management of multiple sclerosis: Addressing invisible symptoms—A narrative review. Neurol Ther 2021;10:75-98.
Kluger BM, Hudson P, Hanson LC, Bužgovà R, Creutzfeldt CJ, Gursahani R, et al. Palliative care to support the needs of adults with neurological disease. Lancet Neurol 2023;22:619-31.
Golla H, Galushko M, Pfaff H, Voltz R. Unmet needs of severely affected multiple sclerosis patients: The health professionals’ view. Palliat Med 2012;26:139-51.
Das Nair R, Mhizha-Murira JR, Topcu G, Tindall T, Bale C, Moghaddam N, et al. Providing emotional support during the process of multiple sclerosis diagnosis (PrEliMS): A feasibility randomised controlled trial. Clin Rehabil 2024;38:1506-20.
Prasko J, Vanek J, Ociskova M, Belohradova K, Holubova M, Kantor K, et al. Unmet psychosocial needs of people with multiple sclerosis. Act Nerv Super Rediviva 2022;64:3-17. 35. Rosiak K, Zagożdżon P. Quality of life and social support in patients with multiple sclerosis. Psychiatr Pol 2017;51:923-35.
Schauf M, Chinthapatla H, Dimri S, Li E, Hartung DM. Economic burden of multiple sclerosis in the United States: A systematic literature review. J Manag Care Spec Pharm 2023;29:1354-68.
Sadeghi B, Estebsari F, Ebadi A, Rasouli M, Sadeghi E. The social support needs of family caregivers of patients with multiple sclerosis: A qualitative study. Arch Rehabil 2022;23:68-87.
Watson C, Thirumalai D, Barlev A, Jones E, Bogdanovich S, Kresa-Reahl K. Treatment patterns and unmet need for patients with progressive multiple sclerosis in the United States: Survey results from 2016 to 2021. Neurol Ther 2023;12:1961-79.
Afshar M, Sadat Z, Bagheri M. The effect of spiritual counseling on hope in patients with multiple sclerosis: A randomized clinical trial. Int J Community Based Nurs Midwifery 2021;9:313-24.
Khari S, Pazokian M. Influence of religion and spirituality on the mental health of patients with multiple sclerosis. J Spirit Ment Health 2024;26:128-40.
Rahnama M, Rahdar M, Taheri B, Saberi N, Afshari M. The effect of group spiritual care on hope in patients with multiple sclerosis referred to the MS Society of Zahedan, Iran. Neuropsychiatria i Neuropsychologia/Neuropsychiatr Neuropsychol 2021;16:161-7.
Dehghani A, Mahdood B, Keshavarzi A, Tajik F. The association between spiritual well-being and coping with disease among multiple sclerosis patients: A cross-sectional analytical study. Neuropsychiatria i Neuropsychologia/Neuropsychiatr Neuropsychol 2025;20:32-9.
Wang LY, Wang WF, Hui SY, Yang L, Liu YX, Li HJ. Emerging epidemiological trends of multiple sclerosis among adults aged 20–54 years, 1990–2021, with projections to 2035: A systematic analysis for the global burden of disease study 2021. Front Neurol 2025;16:1616245.
Sariaslani P, Ghanbari P, Komasi S. Correlation of suicidal thoughts and suicide attempts in patients with multiple sclerosis. J Kermanshah Univ Med Sci 2021;25:e118040.
Maguire R, Deane-King J, Fahy A, Larkin A, Coote S. An evaluation of the role of community care in meeting the needs of people with multiple sclerosis in Ireland. Mult Scler Relat Disord 2023;69:104419.
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