Качество на живот, свързано със здравето, при миастения гравис
Keywords:
миастения гравис, качество на живот, свързано със здравето, препоръки
Abstract
Миастения гравис (МГ) е сравнително рядко, но недостатъчно проучено заболяване със социална значимост, за което особено дефицитни в световен мащаб са данните за качеството на живот, свързано със здравето, (КЖСЗ) и социално-икономическата тежест.
Целта на настоящия обзор е да представи обобщение на резултатите за КЖСЗ при МГ, докладвани в достъпните съвременни литературни източници, както и да очертае стратегии за неговото подобряване.
Публикуваните данни за КЖСЗ варират по страни, като роля за това оказват и различията в използваната методология. Установена е сигнификантна връзка между клиничните фактори и КЖСЗ. По-лошо КЖСЗ се отчита при по-висока честота на симптомите и тежестта на изява, при по-високо ниво на инвалидност, както и при булбарна или генерализирана манифестация. Загубата на трудовата заетост и наличието на депресия са по-достоверни предиктори за влошено КЖСЗ при пациентите с MГ, отколкото тежестта на физическите симптоми. Наличието на коморбидност се отразява неблагоприятно върху КЖСЗ, особено в психоемоционален и ментален аспект.
Навременната и адекватна терапия при МГ, водеща до редукция на инвалидността, се свързва с по-добро КЖСЗ. Правилният медицински подход оптимизира най-вече физическите аспекти на КЖСЗ, докато за намаляване на психоемоционалните симптоми се препоръчва психосоциална рехабилитация, каквато все още не е въведена в много страни, включително и в България.
References
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Stojanov A, Milošević V, Đorđević G, et al. Quality of Life of Myasthenia Gravis Patients in Regard to Epidemiological and Clinical Characteristics of the Disease. Neurologist. 2019 Jul;24(4):115-120.
Rozmilowska I, Adamczyk-Sowa M, Rutkowska K, et al. Improvement of quality of life after therapeutic plasma exchange in patients with myasthenic crisis. Neurol Neurochir Pol. 2016 Nov-Dec;50(6):418-424.
van der Hiele K, van Gorp DA, Heerings MA, et al. The MS@Workstudy: a 3-year prospective observational study on factors involvedwith work participation in patients with relapsing-remitting multiplesclerosis. BMC Neurol. 2015;15:134.
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Barnett C, Wilson G, Barth D, et al. Changes in quality of life scores with intravenous immunoglobulin or plasmapheresis in patients with myasthenia gravis. J Neurol Neurosurg Psychiatry. 2013 Jan;84(1):94-7.
Busch C, Machens A, Pichlmeier U, et al. Long-term outcome and quality of life after thymectomy for myasthenia gravis. Ann Surg. 1996; 224:225-32.
Ostovan VR, Fatehi F, Davoudi F, et al. Validation of the 15-item myasthenia gravis quality of life questionnaire (MG-QOL15) Persian version. Muscle Nerve. 2016 Jun;54(1):65-70.
Mourão AM, Gomez RS, Barbosa LS, et al. Determinants of quality of life in Brazilian patients with myasthenia gravis. Clinics (Sao Paulo). 2016 Jul;71(7):370-4.
Ignatova V, Kostadinov K, Vassileva E, et al. Socio-Economic Burden of Myasthenia Gravis: A Cost-of-Illness Study in Bulgaria. Front Public Health. 2022 Mar 3;10:822909.
Birnbaum S, Ghout I, Demeret S, et al. Translation, cross-cultural adaptation, and validation of the French version of the 15-item Myasthenia Gravis Quality Of life scale. Muscle Nerve. 2017 May;55(5):639-645.
Raggi A, Leonardi M, Ayadi R, et al. Validation of the italian version of the 15-item Myasthenia Gravis Quality-of-Life questionnaire. Muscle Nerve. 2017 Oct;56(4):716-720.
Miao X, Lian Z, Liu J, et al. Translation, cross-cultural adaptation, and validation of the Chinese version of the 15-item myasthenia gravis quality of life questionnaire. Muscle Nerve. 2019 Jan;59(1):95-99.
Taşcilar NF, Saraçli Ö, Kurçer MA, et al. Reliability and validity of the Turkish version of myastheniagravis-quality of life questionnaire-15 item. Turk J Med Sci. 2016 Jun 23;46(4):1107-13.
Alanazy MH, Abuzinadah AR, Muayqil T. Translation and validation of the Arabic version of the revised 15-item myasthenia gravis quality-of-life questionnaire. Muscle Nerve. 2018 Apr;57(4):581-585.
Kumar R, Nagappa M, Sinha S, et al. MG-QoL-15 scores in treated myasthenia gravis: Experience from a university hospital in India. Neurol India. 2016 May-Jun;64(3):405-10.
Rozmilowska I, Adamczyk-Sowa M, Pierzchala K, et al. Validity and reliability of the Polish version of myasthenia gravis – Quality of life questionnaire – 15 item. Neurol Neurochir Pol 2017;51(4):311-318.
Twork S, Wiesmeth S, Klewer J, et al. Quality of life and life circumstances in German myasthenia gravis patients. Health Qual Life Outcomes. 2010 Nov 11;8:129.
Gilchrist JM. Quality-of-Life Issues in Myasthenia Gravis. In: Phillips LH, ed. Update on Myasthenia Gravis. Rochester, MN, American Association of Electrodiagnostic Medicine. 29-35; 2004.
Boldingh MI, Dekker L, Maniaol AH, et al. An up-date on health-related quality of life in myasthenia gravis – results from population based cohorts. Health Qual Life Outcomes. 2015 Aug 1;13:115.
Raggi A, Leonardi M, Antozzi C, et al. Concordance between severity of disease, disability and health-related quality of life in myasthenia gravis. Neurol Sci. 2010 Feb;31(1):41-5.
Kulkantrakorn K, Sawanyawisuth K, Tiamkao S. Factors correlating quality of life in patients with myasthenia gravis. Neurol Sci. 2010 Oct;31(5):571-3.
Leonardi M, Raggi A, Antozzi C, et al. The relationship between health, disability and quality of life in myasthenia gravis: results from an Italian study. J Neurol. 2010 Jan;257(1):98-102.
Liu CW, Luo M, Mei JD, et al. Perioperative and long-term outcome of thymectomy for myasthenia gravis: comparison of surgical approaches and prognostic analysis. Chin Med J (Engl). 2013 Jan;126(1):34-40.
Cutter G, Xin H, Aban I, et al. Cross-sectional analysis of the Myasthenia Gravis Patient Registry: Disability and treatment. Muscle Nerve. 2019 Dec;60(6):707-715.
Raggi A, Leonardi M, Mantegazza R, et al. Social support and self-efficacy in patients with Myasthenia Gravis: a common pathway towards positive health outcomes. Neurol Sci. 2010 Apr;31(2):231-5.
Utsugisawa K, Suzuki S, Nagane Y, et al. Health-related quality-of-life and treatment targets in myasthenia gravis. Muscle Nerve. 2014 Oct;50(4):493-500.
Winter Y, Schepelmann K, Spottke AE, et al. Health-related quality of life in ALS, myasthenia gravis and facioscapulohumeral muscular dystrophy. J Neurol. 2010 Sep;257(9):1473-81.
Bykov YN, Okladnikov VI, Smolin AI. [The quality of life in patients with a different types of myasthenia gravis]. Zh Nevrol Psikhiatr Im S S Korsakova. 2017;117(1. Vyp. 2):64-69. Russian.
Mazzoli M, Ariatti A, Valzania F, et al. Factors affecting outcome in ocular myasthenia gravis. Int J Neurosci. 2018 Jan;128(1):15-24.
Padua L, Evoli A, Aprile I, et al. Health-related quality of life in patients with myasthenia gravis and the relationship between patient-oriented assessment and conventional measurements. Neurol Sci. 2001 Oct;22(5):363-9.
Basta IZ, Pekmezovic TD, Peric SZ, et al. Assessment of health-related quality of life in patients with myasthenia gravis in Belgrade (Serbia). Neurol Sci. 2012; 33(6):1375–81.
Yang Y, Zhang M, Guo J, et al. Quality of life in 188 patients with myasthenia gravis in China. Int J Neurosci. 2016; 126(5):455-62.
Rostedt A, Padua L, Stålberg EV. Correlation between regional myasthenic weakness and mental aspects of quality of life. Eur J Neurol. 2006 Feb;13(2):191-3.
Braz NFT, Rocha NP, Vieira ÉLM, et al. Muscle strength and psychiatric symptoms influence health-related quality of life in patients with myasthenia gravis. J Clin Neurosci. 2018 Apr;50:41-44.
Bogdan A, Barnett C, Ali A, AlQwaifly et al. Chronic stress, depression and personality type in patients with myasthenia gravis. Eur J Neurol. 2020 Jan;27(1):204-209.
Pasnoor M, He J, Herbelin L, et al; Methotrexate in MG Investigators of the Muscle Study Group. A randomized controlled trial of methotrexate for patients with generalized myasthenia gravis. Neurology. 2016 Jul 5;87(1):57-64.
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Published
2022-06-01
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Игнатова В. Качество на живот, свързано със здравето, при миастения гравис. Редки болести и лекарства сираци [Internet]. 2022Jun.1 [cited 2024Nov.22];13(1):5-13. Available from: https://journal.raredis.org/index.php/RBLS/article/view/157
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