Results of medical and social research and assessment of quality of life in myasthenia gravis

Myasthenia gravis (MG) is one of the most common autoimmune diseases of the nervous system. Medical and social analysis of the patient population structure and assessment of their quality of life (QoL) as one of the criteria for the effectiveness of treatment are of great importance for evaluating the condition of patients and the directions of development of specialised care.

Objective: to analyse the quality of life of patients diagnosed with MG.

Material and methods. The study involved 662 patients with MG from 26 regions of Russia. A specially designed medical and social questionnaire and the SF-36 questionnaire were used.

Results. In Russia, women and middle-aged and elderly people predominate among MG patients. MG is characterised by a relatively favourable course (less than half of patients have any form of disability). Almost two-thirds of patients have other chronic diseases. About 90% of MG patients receive drug therapy, but almost half of patients have problems obtaining their prescribed medication. In addition to a significant decrease in physical activity, there is also a decrease in the mental state of patients associated with various physical disorders, as well as fear of the future (fear of symptom recurrence, risk of being left without support and unable to perform daily tasks, the need for lifelong treatment). Among the symptoms of MG that affect the emotional state of patients, weakness and rapid fatigue are in first place, followed by bulbar dysfunction. The role functioning of patients with MG depends to a greater extent on their physical condition and to a lesser extent on their emotional state. Those receiving regular drug therapy had significantly better indicators than those who were not treated. The SF-36 scale assessment confirmed that physical condition and physical functioning, which influence the psychological components of QoL assessment, are crucial for QoL in MG.

Conclusion. A significant decrease in QoL indicators was noted in MG, primarily in the physical component and, secondarily, in psychological health. All this points to the need for early initiation of highly effective pathogenetic therapy, in particular with modern C5-complement inhibitors.

1. Merkulova DM, Merkulov YuA. Myasthenia gravis. In: Karlov V.A. (ed.). Neurology of the face. 2nd ed. Moscow: Russian University of Medicine; 2025. P. 334-46. (In Russ.)

2. Dewilde S, Philips G, Paci S, et al. Patient-reported burden of myasthenia gravis: baseline results of the international prospective, observational, longitudinal real-world digital study MyRealWorld-MG. BMJ Open. 2023;13(1):e066445. doi: 10.1136/bmjopen-2022-066445

3. Merkulov YuA, Plieva EL, Merkulova DM. Pain syndrome, “drooping neck” and myasthenia gravis: clinical observation and literature review. Medical Alphabet. 2024;21:7-12. (In Russ.) doi: 10.33667/2078-5631-2024-21-7-12

4. Howard JF, Utsugisawa K, Benatar M, et al. Safety and efficacy of eculizumab in antiacetylcholine receptor antibody-positive refractory generalised myasthenia gravis (REGAIN): a phase 3, randomised, double-blind, placebo-controlled, multicentre study. Lancet Neurol. 2017;16(12):976-86. doi: 10.1016/S1474-4422(17)30369-1

5. Vu T, Meisel A, Mantegazza R, et al. Terminal Complement Inhibitor Ravulizumab in Generalized Myasthenia Gravis. NEJM Evid. 2022;1(5):EVIDoa2100066. doi: 10.1056/EVIDoa2100066

6. Boiko AN, Bakhtiyarova KZ, Sherman MA, et al. Results of a study of the quality of life in patients with highly active multiple sclerosis in Russia. Nevrologiya, neiropsikhiatriya, psikhosomatika = Neurology, Neuropsychiatry, Psychosomatics. 2022;14(Suppl 1):9-15. (In Russ.) doi: 10.14412/2074-2711-2022-1S-9-15

7. Estevez GDA, Fernandez P. Myasthenia gravis. Update on diagnosis and therapy. J Med Clin (Barc). 2023;161(3):119-27. doi: 10.1016/j.medcli.2023.04.006

8. Ye Y, Murdock DJ, Chen C, et al. Epidemiology of myasthenia gravis in the United States. Front Neurol. 2024;15:1339167. doi: 10.3389/fneur.2024.1339167

9. Carey IM, Banchoff E, Nirmalananthan N, et al. Prevalence and incidence of neuromuscular conditions in the UK between 2000 and 2019: A retrospective study using primary care data. PLoS One. 2021;16(12):e0261983. doi: 10.1371/journal.pone.0261983

10. Boscoe ANXH, L’Italien GJ, Harris LA, Cutter GR. Impact of refractory myasthenia gravis on health-related quality of life. J Clin Neuromuscul Dis. 2019;20:173-81. doi: 10.1097/CND.0000000000000257

11. Farrugia ME, Goodfellow JA. A practical approach to managing patients with myasthenia gravis-opinions and a review of the literature. Front Neurol. 2020;11:604. doi: 10.3389/fneur.2020.00604

12. Szczudlik P, Sobieszczuk E, Szyluk B, et al. Determinants of quality of life in myasthenia gravis patients. Front Neurol. 2020;11:553626. doi: 10.3389/fneur.2020.553626

13. 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;13:115. doi: 10.1186/s12955-015-0298-1

14. Yang Y, Zhang M, Guo J, et al. Quality of life in 188 patients with myasthenia gravis in China. Int J Neurosci. 2016;126:455-62.

15. Garzon-Orjuela N, van der Werf L, Prieto-Pinto LC, et al. Quality of life in refractory generalized myasthenia gravis: a rapid review of the literature. Intractable Rare Dis Res. 2019;8:231-8. doi: 10.5582/irdr.2019.01121

16. Dumbuya JS, Ahmad B, Zeng C, et al. Assessing the effectiveness of measurement scales in evaluating the health-related quality of life in rare disease patients after treatment: a systematic review. Health Qual Life Outcomes. 2024;22(1):108. doi: 10.1186/s12955-024-02324-0

17. Muppidi S, Utsugisawa K, Benatar M, et al; Regain Study Group. Long-term safety and efficacy of eculizumab in generalized myasthenia gravis. Muscle Nerve. 2019;60(1):14-24. doi: 10.1002/mus.26447

18. Antozzi C, Mantegazza R. Impact of Ravulizumab on Patient Outcomes and Quality of Life in Generalized Myasthenia Gravis. Patient Relat Outcome Meas. 2023;14:305-12. doi: 10.2147/PROM.S408175

19. Vu T, Wiendl H, Katsuno M, et al. Ravulizumab in Myasthenia Gravis: A Review of the Current Evidence. J Neuropsychiatr Dis Treat. 2023;19:2639-55. doi: 10.2147/NDT.S374694

20. Ramdas S, Painho T, Vanegas MI, et al. Paediatr Targeted Treatments for Myasthenia Gravis in Children and Adolescents. Drugs. 2024;26(6):719-40. doi: 10.1007/s40272-024-00649-3