Abstract
Amyotrophic lateral sclerosis (ALS) is rare in Tunisia, where access to new etiopathogenic treatment is still limited. In this review, we examine the existing model of care for ALS patients in Tunisia, the law that governs ALS care and how multidisciplinary care is delivered. We also shed light on the clinical particularity of Tunisian ALS patients. We believe that funding challenges for ALS care, improvement of ALS awareness and increased knowledge for ALS management are required. The current challenges of ALS in Tunisia are to ensure coordinated interprofessional care and establish an interdisciplinary model care for people with ALS and their family caregivers as key stakeholders and decision markers.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Achour, N. (2011). Le systeme de sante tunisien: Etat des lieux et defis. http://www.unfpa-tunisie.org. (Article in French).
Alkire, B.C. (2015). Global access to surgical care: A modelling study. The Lancet Global Health 3 (6): e316–e323.
Ben Hamida, M. (1990). Hereditary motor system diseases (chronic juvenile amyotrophic lateral sclerosis). Conditions combining a bilateral pyramidal syndrome with limb and bulbar amyotrophy. Brain 113: 347–63.
Ben Hamida, M. and F. Hentati (1984). Maladie de Charcot et sclérose latérale amyotrophique juvénile. Revue Neurologique (Paris) 140 (3): 202–206.
Beghi, E. (2006). The epidemiology of ALS and the role of population-based registries. Biochimica et BiophysicaActa (BBA)-Molecular Basis of Disease 1762 (11–12): 1150–57.
Bali, T. and T.M. Miller (2013). Management of amyotrophic lateral sclerosis. Missouri Medicine 110 (5): 417–21.
Brooks, B., D. Lewis and J. Rawling (1994). The natural history of amyotrophic lateral sclerosis. Motor Neuron Disease, A.C. Williams, ed. London: Chapman & Hall Medical, 131–69.
Buckman, R. (1984). Breaking bad news: why is it still so difficult? British Medical Journal (Clinical research ed.) 288 (6430): 1597–99.
Dharmadasa, T. (2016). Treatment approaches in motor neurone disease. Current Opinion in Neurology 29 (5): 581–91.
Gauthier, A. (2007). A longitudinal study on quality of life and depression in ALS patient–caregiver couples. Neurology 68 (12): 923–26.
Güell, M.R. (2013). Comprehensive care of amyotrophic lateral sclerosis patients: A care model. Archivos de Bronconeumología (English Edition) 49 (12): 529–33.
Hentati, A. (1994). Linkage of recessive familial amyotrophic lateral sclerosis to chromosome 2q33–q35. Nature Genetics 7 (3): 425–28.
Hogden, A. (2015). Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care. Health Expectations 18 (5): 1769–82.
Hogden, A. (2017). Amyotrophic lateral sclerosis: Improving care with a multidisciplinary approach. Journal of Multidisciplinary Healthcare 10: 205–15.
Jennum, P. (2013). Mortality, health, social and economic consequences of amyotrophic lateral sclerosis: A controlled national study. Journal of Neurology 260 (3): 785–93.
Kacem, I., I. Sghaier, S. Bougatef, A. Nasri et al. (2019). Epidemiological and clinical features of amyotrophic lateral sclerosis in a Tunisian cohort. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration: https://doi.org/10.1080/21678421.2019.1704012.
Knoppers, B.M. (2006). The emergence of an ethical duty to disclose genetic research results: International perspectives. European Journal of Human Genetics 14 (11): 1170–78.
Logroscino, G. (2018). Global, regional, and national burden of motor neuron diseases 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology 17 (12): 1083–97.
Luna, J. (2019). Clinical features and prognosis of amyotrophic lateral sclerosis in Africa: The TROPALS study. Journal of Neurology, Neurosurgery and Psychiatry 90 (1): 20–29.
Mayadev, A.S. (2008). The amyotrophic lateral sclerosis center: A model of multidisciplinary management. Physical Medicine and Rehabilitation Clinics of North America 19 (3): 619–31.
Marin, B. (2012). Juvenile and adult-onset ALS/MND among Africans: Incidence, phenotype, survival: a review. Amyotrophic Lateral Sclerosis 13 (3): 276–83.
Mitsumoto, H. (2007). A strategy to develop effective ALS therapy. Brain and Nerve= Shinkeikenkyu no shinpo 59 (4): 383–91.
Makhloufi, K. (2015). Have health insurance reforms in Tunisia attained their intended objectives? International Journal of Health Economics and Management 15 (1): 29–51.
Ozanne, A.G.O. (2011). Quality of life, anxiety and depression in ALS patients and their next of kin. Journal of Clinical Nursing 20 (1–2): 283–91.
Peters, D.H. (2008). Poverty and access to health care in developing countries. Annals of the New York Academy of Sciences 1136 (1): 161–71.
Santaniello, B. (2018). ALS managed care considerations. The American Journal of Managed Care 24 (15 Suppl): S336–S341.
Scott, A. (2017). Drug therapy: On the treatment trail for ALS. Nature 550 (7676): S120.
Steen, I.V.D. (2009). The costs of amyotrophic lateral sclerosis, according to type of care. Amyotrophic Lateral Sclerosis 10 (1): 27–34.
UNESCO Institute for Statistics (2018). http://uis.unesco.org/
Zoccolella, S. (2007). Riluzole and amyotrophic lateral sclerosis survival: A population-based study in southern Italy. European Journal of Neurology 14 (3): 262–68.
Acknowledgments
The authors would like to express their thanks to multidisciplinary ALS Tunisian team: Prof. Dziri Catherine (Head of Department of Medicine Physical and Functional Rehabilitation of the National Institute of Orthopaedics “M.T. Kassab,” Tunisia), Prof. Trabelsi Samah (Head of National Pharmacovigilance Center, Tunisia), Prof. Brahmi Nozha (Head of Department of Intensive Care and Toxicology, Montfleury, Tunisia) and Prof. Kallel Lamia (Head of Gastroenterology Department, Mahmoud El Matri Hospital, Tunisia) for their excellent assistance.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2021 The Author(s)
About this chapter
Cite this chapter
Kacem, I., Sghaier, I., Nasri, A., Gouider, R. (2021). Amyotrophic Lateral Sclerosis Care in Tunisia. In: Blank, R.H., Kurent, J.E., Oliver, D. (eds) Public Policy in ALS/MND Care. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-5840-5_20
Download citation
DOI: https://doi.org/10.1007/978-981-15-5840-5_20
Published:
Publisher Name: Palgrave Macmillan, Singapore
Print ISBN: 978-981-15-5839-9
Online ISBN: 978-981-15-5840-5
eBook Packages: Political Science and International StudiesPolitical Science and International Studies (R0)